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Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

(998 Posts)
CMOTDibbler Wed 01-May-13 09:04:17

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

glaurung Wed 01-May-13 09:26:04

Good idea CMOT. Both my in laws have vascular dementia, it's very challenging.

Theas18 Wed 01-May-13 09:50:57

Brilliant thread CMOT

Dad has vascular dementia - interestingly it probably started with some sort of anoxic assault when he had CABG 20yrs ago to the month. He was never quiet on the ball after. Though I guess surgery 20yrs ago was a bit hit and miss.

He also has an Alzheimers label as of a couple of years ago.

Fortunately my kids are teens. They cope really well with his child like side. It makes me sniffle a lot when my 17yr old hulk of a son is Pulling the arms the right way out to get dad into his coat, zipping him up or taking him to the gents " just in case poppa before we get in the car, I shall go and try as it could be a long journey if the traffic is bad" .

Dad has deteriorated a lot recently since he's had radiotherapy and a nasty infection after. He has had phases of thinking that him and mum starting a family would be a brilliant idea .......wondering if he was married to mum and who he was married to before....then being tearful because she's been 15mins upstairs putting the washing away and he thinks she's left him... (I think he thinks he's maybe 30 so is looking for thhe young pretty wife he had then not the old biddy in his house now!).

He's very interesting in a " case study" way. He didn't know who I was when I turned up on Friday. I asked him if he knew who I was and he said " of course I do I've known you a long time but I can't quite get the name" and when we went to DD2s Saturday morning concert (he didn't see her before hand as we got in late and she left early) he pointed to her and said " she's ours and she's wonderful, best of the lot" but couldn't name her! He had a moment of appropriateness when he told the conductor how great the concert was, best I've heard ever I think..... but then again I bet he couldn't remember any of the other ones LOL

This making up stuff and "talking round" things you cant quite recall is really classic.

He's also laughing inappropriately now- I think to cover the fact he cant " compute" stuff eg " cup of coffee dad?" him....haha ha that's a good one...hee hee... well if you think it's a good idea... Better than the teary phase that I fortunately didn't see, when he had doubts about his relationship with mum.

whattodoo Wed 01-May-13 09:56:58

Oh, it's so hard, isn't it?

Am listening to Nicky Campbell on R5L at the moment, so difficult to listen to the stories and know there is little that can be said or done to help.

My adored gran has vascular dementia. I love her so much and it breaks my heart to see her like this. She's done so much for me all my life, why can't I help her now?

The vest I can do is visit as much as possible, give her a bit of company and hope it doesn't distress her too much when I leave.

She is in a home, and the staff are so wonderful - caring, gentle, cheerful and kind.

Theas18 Wed 01-May-13 10:07:39

Agree whattodo

Have a hug for you and your gran. I think the separation tears are like leaving a toddler at nusery though, mostly with a bit of distraction from good carers ( ...why don't we go and see if it's time for corrie.... lefts get a wash and brush up before dinner... etc) it will be done and dusted fast.

Glad her home is good. Mum and dad are at home still but how much long I don't know...

CMOTDibbler Wed 01-May-13 10:19:59

Your ds sounds lovely Thea. At Christmas my ds(6) was showing mum how to colour in and helping her read the childrens menu sad He copes amazingly well with her, but its like having a great grandma you are fond of iykwim.

Mum used to talk round things, but doesn't even have the language for that now. It used to be hilarious in a black humour way 'I went to that place with the oooh, coloured plants, with ummm, my friend with the legs'.

Its all terribly familiar though, as her mum had dementia - though I'd guess it was Alzheimers - and she reverted in time, thought mum was a child and referred to dad as her fancy man.

Just been on the phone organising carers for them. Dad has finally given in and accepted they need them which is a huge relief, and fortunatly they can afford them.

Lilymaid Wed 01-May-13 10:37:08

DMIL has vascular dementia. DH is wracked with worry about what level of care he can personally give her given that he lives over 100 miles away (near DBIL's home) and works full time etc.
He is currently trying to arrange for carers to go in to see her twice a day (she's refused them entry in the past). She needs to take glaucoma eyedrops etc every day and we are worried that she'll end up blind otherwise.

Needmoresleep Wed 01-May-13 10:46:41

CMOT well done, both on the thread and on the carers.

In case it helps I found my mum's carers kept quite a distance at first and almost allowed her to treat them like visitors. This approach seems to be paying off as they are now familiar and so are "allowed" to do more. Frustrating at first as I had hoped they would provide an immediate solution to the various problems, but am learning that nothing happens quickly and see that building trust was the immediate priority.

Lilymaid Wed 01-May-13 10:50:33

DH and DBIL made the mistake previously of introducing the carers themselves. So DMIL thought she had no need of carers as her sons were there. This time we have introduced them via the management of the sheltered accommodation she lives in - hopefully she will think they are the cleaner/maintenance man!

Theas18 Wed 01-May-13 13:09:16

I'm having to play a horrible balancing act here as Dad has lymphoma and multiple other health issues . How hard should you fight to keep someone alive when their memory and personality is dying faster than the rest of them?

suburbophobe Wed 01-May-13 13:11:16

This is so familiar..... My mum who died in February at the age of nearly 92 had dementia for about 7 years.

She started calling my dad her toyboy (he's a bit younger than her).... married over 50 years.

It's really hard to watch the decline of a parent.

Wishing you all all strength in coping with it.

What a lovely supportive thread smile
I'm a nurse working with dementia and enduring mental illness, and it's tough (though very rewarding) and can't imagine how tough it is to have your parent or lived one need the care that we provide,
I can say though, how attached we get, how much we love our residents and how much fun we try to bring to each day,

whataboutbob Wed 01-May-13 13:38:32

This is a good idea and I hope the momentum can be kept up for this thread. Somemay recognise me and my story: Dad is 78 yrs old, has Alzhemiers and is a widower (mum died 18 years ago). He lives with my brother who suffers from mental illness. I have 2 kids and work 4 days a week, about 2 hours away on public transport. 18 months ago the s* hit the fan: dementia getting worse, not able to manage his affairs but no real insight. Went through the whole medical process of various appointments and brain scans, to get the diagnosis and I hoped, some support. Took 3 months off work unpaid leave, got referral to home treatment team and Admiral nurse, sum total: nothing. The cleaners I had arranged via a specialised agency bailed out, couldn't cope and were probably freaked out by my brother, who has been getting steadily worse and now no longer leaves the home. This is not even sandwich generation, because I am in the middle, being pressed on from above, below, and the side (more like a cube of bread with filling in the middle). For brevity's sake I'll skip my battles with the health system, to try and get my brother some medical/ psychiatric help. Suffice to say that after 4 months of me pushing he still hasn't seen a psychiatrist (but is on the waiting list).
There's no one else involved family wise. Dad's siblings are great at sending emails asking me to do x, y and z, but never come ( in fairness they are not young, and live abroad).
I only cope with weekly counselling sessions which have made me realise 1) I can't do every single thing 2) I am not a bad person for wanting to do stuff for myself sometimes, even if Dad and brother are living in squalor.
Sorry this is v long yet only a little snapshot of the situation.
I am going to Dad's tomorrow to re start the process of meeting with "services" (the psychogeriatrician did a home visit and re-referred).
A final thought: I see my role at present as boosting Dad's quality of life as much as possible while he can still enjoy his usual pastimes. He just needs me to assist: organising concert outings, meetings with friends and even going to his old academic club with him(although latter getting more and more dicey as others there are responding to him awakwardly now, he can't really keep up).
Final final thought: when you have a parent with dementia you have to be "bomb proof " I try and not let embarrassment hold me back. Dad came to kids' drama club last week, food stains all way down his clothes, hair looking a fright, I made a point of introducing him to the teacher. There's going to me more and more of this demographically, people have to get used to it and I won't let shame hold me back.
Good luck to all, and look after yourselves too (and your kids).

WynkenBlynkenandNod Wed 01-May-13 14:25:52

Great idea. Haven't got time to read or post properly now as have to start school run in a minute. Just been to look at a couple of care homes for Mum this morning, she has Vascular Dementia and Alzheimer's.

WynkenBlynkenandNod Wed 01-May-13 16:07:42

I'm very sorry we're all in the same boat. I guess more will join us sadly, as Whataboutbob says there is going to be more of this. Very good news about the Carers CMOT.

We're in a bit of a mess at the moment. Mum's only recently diagnosed but I've known for about 3 years. I realise now though she has been very paranoid for about 20 years and all the things she said about my Dad aren't true. My brother and Dad are estranged, my Brother cut contact, based in a large part on what Mum has said. He's realised and would like to tentatively restablish contact with my Dad, who doesn't want to. I haven't told my brother that bit. It's complicated by the fact Brother lives overseas and hasn't seen Mum for 4 years and crapping himself about coming home.

Mum also estranged fom her sister who is abroad and I know now paranoia was at the root of that. I'm back in touch with that side of the family and trying to mend the damage as best I can without being fluent in the language.

Since November there has been a large decline in Mum. She's taking Aricept for the Alzheimer's aspect but her cleaner witnessed her having a sizeable TIA a couple of weeks ago. Her paranoia has ramped up, she thinks cleaner has stolen bread and cabbage and has been on phone I me and Brother about this. She didn't seem to be able to work the kettleth other day, has stopped washing herself and clothes again. Yesterday she rang me about money she paid me and thought I was ripping her off. We sorted that the she announced she wants to go into a home a people are knocking on her door just before midnight and she's cared.

SW coming for assessment next week, Memory Clinic again on Friday. Brother has decided CCTV will solve the problem but agreed I need to start looking for homes. DH insisted on coming with me for the first couple today. First one horrible, second one beyond what I could have hoped for. She's coming to look next week. Brother shocked as thought I was going to say they were all vile. He was thrown when both DH and I said it's great. Think this will be an ongoing saga plus if she goes her house will need sorting and selling.

whataboutbob Wed 01-May-13 18:31:06

Hi wynken. Sadly it seems there isn't t really any alternative to CH in most cases, past a certain point of deterioration. It's great your mother actually has e insight to see that and you found a nice place. I remember looking at places for my grandfather and taking an instant dislike the manager of the 1st one. The place he eventually went to seemed to have much more humane values. Gut feeling is important.

glaurung Wed 01-May-13 19:15:25

MiL is now very frail - she has declined a lot physically in the last couple of months and doesn't know who anyone is (except she knows she knows us iyswim, she just can't quite remember who we are) any more. She really needs a hip replacement but isn't well enough, so is in considerable pain and finds walking even very short distances (I mean across a room, not down the street - she never goes out any more) very difficult. She wakes a lot at night and gets very anxious if left alone in a room for even a minute or two. She can still feed herself if the food is easily manageable, and she is more or less continent, but she can't wash or dress or even stand up from a chair without help. Since FiL had a stroke in Feb she has had a live in carer. FiL has mild dementia since his stroke, but thinks/claims he's perfectly fine (and puts up a very good front for the doctors too). His distant memory is fine, but recent stuff isn't. He's very resistant to havng any help and seems to have some personality changes which is difficult and he can be very demanding. He often phones us in the middle of the night about something trivial (and sometimes for something non-trivial like a fall too). Today he was muddling MiL with his mother, but generally he recognises people OK. The pair of them seem to lurch from crisis to crisis - they flooded their house recently, MiL has had several falls lately and been to A&E and had a brief hospital stay for kidney failure, but we are muddling through. Even things that ought to be straightforward like medicines seem to present a continual challenge - the wrong meds often seem to get into their dosset boxes etc. The number of medical appointments they have between the pair of them is impressive, and as dh is an 'only' it's down to us to sort out everything. I am so relieved our dc are older, because it's really rather like having toddlers all over again.

Elasticsong Wed 01-May-13 22:37:27

How timely to find this thread... My DM is only 68 and has Parkinsonism and some form of dementia (as yet undiagnosed - maybe Lewy Body). She's currently in a home following a crisis episode. My poor dad can't look after her anymore and, though I live nearby, I have 2 young dcs and can only do so much to help. This week has been so worrying and gutting and revolting.
Sympathy all round to all of you in similar circumstances. It's so hard to hold it together and be the strong one in front of a baby, a 5 year old and a broken father (damn self-pity -sorry, it has been a bad day).

CabbageLeaves Wed 01-May-13 22:44:08

Early days for my mother so I feel a bit of a fraud posting here. How do you assess dementia progress anyway. I know she failed some test the GP did but has refused a memory cafe. She lives at home with my Pa who keeps her ticking along. I cannot imagine the chaos if we lost him. I really can't.
I'm fearful of coping in the future

Elasticsong Wed 01-May-13 22:50:21

Assessing dementia progress seems to be a tricky business in my experience. Mum was diagnosed with anxiety and depression for a year before we managed to get the GP to take us seriously. Every case is so different I think. My mum's memory still hasn't gone but she talks nonsense / is paranoid and delusional and suffers from hallucinations. With her, it has progressed really swiftly but, when my Gran had Vascular dementia, the progress was slower and more regular. It's scary stuff really.

CabbageLeaves Thu 02-May-13 07:20:39

Slow and regular seems to be our experience. I don't get to talk to a HCP about it and my Dad knows but doesn't wish to acknowledge. He cries if I refer to it so I wait until he brings it up.

It's only when I think of my Dad dying that the extent of it strikes me because they live independently but she can not on her own

Elasticsong Thu 02-May-13 07:33:29

Cabbage, I know what that feels like - bloody horrible. My dad hid a lot of mum's issues to begin with and has done some serious head-burying. I'm now in the position of 'being in charge ' because my dad is emotionally frozen, it seems. I think, with us, it got to the point where dad's avoidance of the issues meant Mum wasn't getting the care she needed and at that point I had to intervene. Seeing your father crying is a soul-destroying thing. Until the last few months, I'd only seen my dad cry on one occasion.
Mum's supposed to be moved to hospital today from her temp care/respite home. She doesn't understand what's going on and is just anxious and very confused. One of the worst things is that when I take my daughters in to see her, my 5 yo runs to cuddle her and gets almost nothing back and my 15wk old is mostly ignored by mum. My mum would never have blanked her grand kids before. Ow, it hurts...

CMOTDibbler Thu 02-May-13 16:50:29

Hugs to you Elastic. It is heartbreaking.

Dad loved the care manager, and is happy to start - fortunatly, with buy in from him, mum gets overruled. I think he was also embarassed with how bad the cleaning company said the house was.

WynkenBlynkenandNod Thu 02-May-13 17:45:44

My Mum doesn't cope well with the DC's, it is hard. I hope the move goes smoothly Elastic and she settles well. Take very good care of yourself, can you arrange a couple of treats for yourself, even if it's a magazine to read when you go to bed ?

Things moving on a pace here. Mum definitely wants to go into a home. My brother is coming to terms with it. I looked at another today but it's not for Mum. Bit concern is the one I like is a purpose built unit for Dementia sufferers next to an established nursing home. Friend's FIL was in the main nursing home bit but they moved him as they felt the care wasn't up to scratch and it smelt. The new bit has a separate care manager but now I'm worried. Any thoughts ?

I've got a friend asking her neighbour where her Mother went and I'm going to see our Local Authority one which has just started taking self funders. Heard good things about the staff and my neighbour works there. Problem would be getting a space though. Brother choked as Mum telling him what she wants him to have from her house. All I can feel is relief that she wants to go into a home whilst still in control and it can be on her terms so she can hopefully settle and will feel comfortable there before she deteriorates. Memory clinic appointment tomorrow.

CabbageLeaves Thu 02-May-13 18:57:01

I struggle with me serious head burying vs facing up to it. Facing up feels like I'm willing it on her.
Hope it went well today Elastic

Wynn. I'd visit and get a feel for the place if you can

WynkenBlynkenandNod Thu 02-May-13 19:19:20

I loved it Cabbage and so did DH. We didn't look at the old bit where friend's FIL was.

CabbageLeaves Thu 02-May-13 19:32:11

Oh sorry. I realise you'd visited now! I'd go with that tbh. I think you do get a feel and it comes down to staff which comes from the leadership

Elasticsong Fri 03-May-13 09:13:54

Thanks all for the kind words yesterday. They made me cry! Yesterday was dreadful. A nurse from the Early Intervention team decreed that Mum needed to go to hospital. We were told this had been agreed by her (incompetent) GP. Long story, but, in the end, she was rejected by the ward sister at the hospital because the GPs had failed to write a medical report about Mum prior to admission. Guess what? The GP is away until Tues. It's a total shit show and today I'm raging. Poor mum is back in the temp care home until, well, who knows. Why do you have to fight for everything when you're feeling so emotionally vulnerable?
Hope other people's experiences with adult social care types and medical professionals are more empathetic and proactive than ours...
Good wishes to you all for today. Sorry to be so me me me ATM. The shit is hitting the fan I'm afraid.

Needmoresleep Fri 03-May-13 11:23:54

Me me me is fine. Your situation sounds dreadful.

This is going to a long haul. Any chance of changing GP? I managed it, and changed practice, and it has made all the difference. Prompt referrals, him phoning me back with test results and suggesting next steps and so on.

You might ask the manager of the care home. They see GPs, and know who is responsive, sensible and who will do house calls. Then maybe a discrete chat with the Practice Manager to find out if can be done. If you cry, so be it. It is not a sign of weakness but a sign that you are exhausted and at the end of your tether.

My mum had her dementia diagnosis given yesterday. Specialist could not have been nicer. He was clear that in the olden days it was simply called "old age". Now she is safe, settled, and stable, she is really improving. It was a struggle, with some pretty bleak spells, and in the long term her memory/health can only get worse. But if it helps, there really is scope for periods where the care is sorted and quality of life is as good as it can be. Get there and everyone feels a lot better.

Another one who feels a bit of a fraud. Mum has no diagnosis (yet) but is facing other multiple health issues that to be honest are more pressing and if they go the wrong way will finish her off before the dementia even becomes an issue.

I must say, kids are fantastic in many cases better than adults. DS1 was so patient with his great grandma that she asked for him to move her and turn her and wash her when she was bed bound as he was so gentle. He would have been about 15 then and I thought it would have grossed him out, but not at all. He moved in with my then MIL and lived there over the summer before she died so he could help more.

He's going on to do medicine (outing self) and did his gap year working in a care home on the "upstairs" ward where the residents needed a lot of care and a lot of lifting. They adored him, they all gave him the loveliest gift when he left and he still goes back to see them.

whataboutbob Fri 03-May-13 14:03:13

Freddie M that is a great post. My boys are also good with their grandpa, are proud when he comes to their school at pick (even though he's unkempt to say the least) and love him staying over. They're not above cracking jokes about him mind you.
Anyway, just wondering if anyone else lapses into paranoia about their own memory? As Dad and his brother both have Alzheimers I keep watching myself for signs of forgetfulness and get really annoyed when I forget something/ can't get my words out (usually when I'm furious with the kids). I'm 46 but sometimes get apprehensive about it happening to me too. My GP just dimissess my occasional lapses as stress.

Theas18 Fri 03-May-13 16:33:51

Eek it's like we re all clones here, such similar experiences.

Whatabout I regularly worry about my memory. Mind you it's always been bad..... I'm getting a bit obsessive at work as I can't miss things there.

freddiemis my DS is hoping to do medicine if he can too. Just, yunno the exams and offers and stuff to get through first!

DS "failed" the first time, one B at a-level, so he took a gap year and did a different but related degree, and is starting as a graduate entry in september. He's wanted to do it for as long as I can remember.

FreckledLeopard Fri 03-May-13 16:52:24

Signing in to this thread. My DM has vascular dementia, still fairly early stages, but she has certainly gone downhill over the past 18 months.

She's in sheltered accommodation and is ok when she's in her own flat, in her own routine, but gets thrown if she goes anywhere unfamiliar.

It's such a worry - I'm an only child, working full time and a single parent and I live two hours away. She's a widow - my dad died when I was a teenager.

So glad this thread is here!

Theas - a bit of a word to the wise, lessons we learnt the hard way.

Make sure if he's doing his form that he puts down at least 2 medical schools that will take resits. Not all do. and most of those that do you need to have had them down the first time round iyswim.

We didn't know that and it buggered DS1 up.

WynkenBlynkenandNod Fri 03-May-13 17:04:37

Elasticsong that sounds awful for you and your Mum, I'm so sorry. I agree about changing GP's after that if possible.

My DC's aren't great with my Mum which is a bit upsetting. I'm hoping that when she goes into a home they might be happier visiting her there. I'm very very paranoid about my memory and not being able to find the right words. But swapping notes with friend also in 40's it does sound like a common theme.

I didn't sleep last night worrying about the care home situation. First thing we went to look at two morewithout appointments having discounted the other. First one should have been good but felt cold. Second one was a lovely one, new build next to existing care home which has been in the family for 30 years. Rooms are a better size, some have a balcony (that fractionally worries me !) the kitchen is open to the dining room so residents can see the food being prepared and can talk to chefs, 1920's style theatre, little old fashioned pub with piano, Chinese style library, list goes on.

Got through the door from looking and friend rang it say her neighbour said to look at the second one, she wasn't able to get her Mum in and as gutted. Then went for Lunch before Memory Clinic and my friend we saw there knows someone in it who loves it. Feeling much better about it all. Mum going on Sunday to look and Matron will discreetly assess her and if she likes it we'll book her in for a week, she's very keen to try . Looks like she'll be able to stay on Aricept for now. Memory Nurse could see how paranoid she is so will be interesting whether she does refer to the Community Team as she said she might. She thought it would be good for Mum to go into a home as TIA's will only progress. All in all Dementia issues have taken up another whole day again. Sorry, have done a longer post than I thought I would.

Needmoresleep Sat 04-May-13 09:57:28

Glad I am not alone in worrying about my own memory. My mother's memory assessment did it. She had no risk factors, I had most of them. Since then every headache has been a mini-stroke. The recent focus on Thatcher's dementia has not helped. So guilt as I self medicate the stress with wine.

Inevitably the medical advice is contradictory. (Yes I have been googling) Exercise is good yet Andrew Marr blames his stroke on exercise. Stress is obviously bad, but how to prevent it. And anyway healthy living has not done my mim mich good.

So those mini tests. Can I remember peoples names. Can I complete the Evening Standard Suduko. No but I'm not sure I ever could.

My mother had never been very interested in my children, unlike my brother's...., however they have been good about going down to help me. My daughter took to baking for me each week. Roulade, éclairs etc. I got to choose. (Weight gain, and I put on a stone in 4 months, is another dementia risk factor. )

I think my focus on someone other than them has been good. I now however have no excuse for not sorting out the house and having our financial affairs in order. They know I know.

WynkenBlynkenandNod Sat 04-May-13 14:42:51

The Consultant we saw when Mum was diagnosed was at pains to point out that having a relative with Dementia can increase the odds but it is absolutely no means certain that we'll get it and we must absolutely not think like that. I nodded feebly and it is hard when a family pattern of it exists but I guess identifying things like high BP and cholesterol in your 40's will help reduce the risks , certainly for Vascular Dementia.

DDay for us tomorrow. If Mum likes Care Home , sorry Assisted Living Apartments and they feel they are appropriate for her, then she's going in. And then the fun begins. One house to be sold and years and years of hoarding to sort through.

whataboutbob Sat 04-May-13 18:57:00

Yes, although dad has alzheimers he has just about every risk factor for vascular dementia. So I went to one of those mid life health check things and got my cholesterol , BP, blood glucose liked up. My BP is up after being clinically low previously. The nurse said it can be stress related ( no kidding!).
Echoing what a previous poster said, dad has had several heart attacks which cause periods of anoxia and I think this has also contributed to his cognitive decline.

CabbageLeaves Sat 04-May-13 20:35:54

My ma has had high blood pressure for 60 years. I have low BP but still feel a little 'daft' at times. Busy life meaning I struggle juggling that's all I'm sure.

Spent best part of today with her and she was fine. Absolutely fine. Makes me doubt my thoughts

Shlurpbop Sat 04-May-13 21:00:12

Hi everyone. Just wanted to show my support for this thread. My step dad was diagnosed with dementia about 6 months ago. Only early stages but it was a real relief to get the diagnosis as we'd all suspected for a long while.
Will be following this thread and Will attempt to sign my mum to mumsnet as I think this thread could be a big help to her smile

CMOTDibbler Sat 04-May-13 21:42:06

We went to my parents today as dad needed help to change the beds. DH took him out and pushed him round town in their wheelchair (after an arguement about using it) and helped him shop.

I changed the beds, febreezed their matress (boak), did 3 loads of washing after washing the washing machine, bleached the heck out of the bathrooms and kitchen, dealt with the maggoty bin, disposed of mouldy food, folded washing, and mum... mum just laid on the downstairs bed. Ds would run in every so often to show her tadpoles in a jar, or the globe he'd found in the dining room and she just didn't interact meaningfully at all.

She won't eat, and is hardly drinking even when given a drink. Her friend came to visit, and the contrast was awful to see between them. Mum was pleased to see her, but just zoned out completely.

DH had stern words with dad about keeping on with the carers and about how mum will need them when he has his operation. I realised the time has come when I'll have to be buying their clothes and new sheets. Somehow this is hard to get my heqad around

Needmoresleep Sun 05-May-13 06:45:34

Fantastic decription and all too familiar. Scrubbing down the washing up bowl, and removing the mushroom farm underneath. I kept getting sick until I bought two packets of antiseptic wipes to use on door handles and bathrooms.

Not surprisingly mother is physically much better now and this has meant she has been able to improve her orientation.

Your mother sounds very poorly. The house challenge on its own would be more than enough. Supporting your dad and ensuring your mum gets the health care she needs is a huge task and emotionally draining.

Thank you for such warm and vivid posts. I hope can feel our support.

Oh god yes to maggots bins. I remember years and years ago I was carer for my great aunt and hadn't realised how bad she'd got until she had a fall.

I think I threw out every item of food and brought home a car load of washing to do and some of her pants fell apart in the wash

WynkenBlynkenandNod Sun 05-May-13 07:54:09

Can relate to all of this. Mum wouldn't let anyone in her room for ages until at Christmas shortly before we first went to the Memory Clinic I marched in. There was no sheet on the bed, the bedclothes were close to marching off to the washing machine and reeked. The mattress had fallen down to the middle of her electric bed so so put old sunlounger cushions behind her. One of her pillows was two cushions stuffed in a pillow case, the bed had come away from the wall.

In the kitchen she had a stash of plastic bags she'd put on top of fruit and forgotten about. On the sofa she had a huge pile of papers. More revolting fruit underneath and there's a toilet roll holder stuck to the leather. I had to throw cushions and towels she'd been sitting on, took 5 loads of washing. Then in the bathroom she has a cupboard where she's I adequately rinse her knickers and leave to dry before she eventually washed them and the smell of urine has permeated into the plaster. This was with her having a weekly cleaner, she wouldn't let her touch certain things.

I had to buy her new bedclothes and clothes. Seeing all this in black and white and knowing she's got worse since then makes me realise that a home isn't really premature . After that I need to ring the building society with her there to trace her account and see how much she has in it and get her to hand over all her paperwork for me to see exactly where she is with her finances.

Elasticsong Mon 06-May-13 19:38:08

Such sad stories... Such supportive families though.
So, my poor Mum is STILL in her inappropriate home, some 12 days after her 'temporary, respite' admission. She's very confused and, mostly, truculent and moody. Tbh, I can understand why.
Does anyone know anything about 'best interests meetings'? We've been told we need one but no one seems to be organising it and I don't really know who to get cross with...

Needmoresleep Tue 07-May-13 11:44:08

Crisis over, so after a couple of weeks off, I am ploughing my way through second order problems. Indeed it feels as if much of the past few months has been finding creative solutions to a range of new and interesting challenges.

On my list is stemming the tidal wave of junk mail, now all forwarded to my house. I started sending things back, then tried emailing firms, but have now taken to phoning in great "distress" and implying I am newly bereaved. This has sorted most, but I suspect it will take WW3 to stop Vital Nature.

I also have three years tax returns and the slightly scary issue of investing substantial funds wisely. Never having had savings myself, it is a bit worrying. Attorneys are apparently like Trustees and can be sued if they fail to be proactive and ensure that it is properly looked after. Indeed I think there is potentially a criminal offence. I had hoped sorting out the registration of the LPA, getting it all into one place and knowing where it was would be enough for now, but apparently not. I do however get to go to some plush function organised by Financial Advisors. Plus the new experience of the bank manager phoning me and trying to set up an appointment.

Another thing has been catch up on things like dentist and optician. On the latter I have found opticians who come round www.homecarecommunityopticians.com/index.html
Its free of charge, though you pay for glasses. Great as nasty things can happen to eyes as you get older, and a friend shared a horror story of her mum going completely blind in the space of just two months with macular degeneration. Anything that saves me spending 5 hours on the motorway has to be good.

Not least after that is trying to sort out all the stuff I have brought back with me. Paperwork obviously, but also 15 bottles of shampoo, 20 tubs of Ariel, and a whole load of other stuff I thought I might be able to make use of at some point. My favourite is a little army of hotel shower gels, collected over many years, which my daughter and I are happily decimating. I felt really awkward about how much was going to the dump, and ran out of the energy needed to make decisions on what to do with stuff. Instead I simply filled my car at the end of each trip and took it home. In time I can give away whatever we wont use, and once everything is in the right place I can rejoice that I will never have to buy another sandwich bag, photo paper, or greetings card again.

Onwards and upwards....

WynkenBlynkenandNod Wed 08-May-13 07:34:58

Elasticsong, have you got anywhere ? Mum's never been in hospital but I think I'd try and find her social worker and push them for the best interest meeting.

Needmoresleep, I had a day of the whole POA thing yesterday. Nearly lost my cool in Barclays. I had the POA, my Barclays account card which is my married name registered to my current address. The POA uses my maiden name which I use still, showing also my current address. I had my driving licence which is maiden name and has a sodding photo of me plus a statement from another bank in maiden name with my address on it. That wasn't enough apparently and I have to go back with the marriage certificate. Nationwide were a doddle.

Mum was all set to go into home when SW came yesterday for assessment. She feels it is much too early for Mum to go and is offeri g to substantially increase care package and see if her manager will agree to temporary overnight care to reassure the knocking she thinks is happening is the pipes or something. Also is going to speak to Memory clinic a thinks Mum is probably slightly depressed and to see if they can deal with her hallucinations.

It's in the SW's interest for Mum to go into a home as she wouldn't be eligible for the 12 week disregard and is self funding so basically would be off their budget but she was in effect offering more money from her budget so we feel we should listen. Mum said she wants to try the increase care package so I think Home is off the Menu right now , depending if feels the same way today. She's also agreeing to try a lunch club. So if that's the case no sorting out the house for me at the moment and I'll have to buy my own washing powder still!

CMOTDibbler Wed 08-May-13 10:03:04

Needmoresleep - Freecycle could be your friend here. I've found people were very keen to come and collect all sort of tat - so you get it out of your house with minimum effort.

Wynken, I hope the increased care helps.

Dad has decided against the carers, but has agreed they will come when he is in hospital for his surgery. The cleaners were amazing, and he is agreeing to have them regularly. But we'll see. However, knowing that their house now won't feature on 'how clean is your house' makes me feel better.

whataboutbob Wed 08-May-13 14:21:45

Hi everyone , here's my update. Had meeting last Thursday in Dad's home with the OT from the home support team and a lady from the agency he is recommending, to help support Dad at home. Dad unfortunately had forgotten I was coming,and didn't turn up until the meeting was over. I was impressed with the lady from the agency, who wants to start softly softly with some housework and practical tasks and then build up to maybe taking him shopping (he's lost his car due to non payment of tax- plus his driving was terrifying)and for the odd visit to a cafe. She's going to visit Dad today and I reminded him yesterday. I'm just keeping my fingers crossed that he accepts some help. His memory is deteriorating at a shocking rate but he seems to have little insight and mostly thinks he's coping fine.

WynkenBlynkenandNod Wed 08-May-13 19:02:19

I know the feeling about a cleaner house. Mum's smells a bit of urine though. The SW pointed it out but I was aware. It smells a lot less than it did though. Hopefully the Carers will get her in the shower more and clen clothes. Have asked for an Incontinence assessment as well.

That's good about getting out and about Bob. Hopefully if she goes softly at the beginning he'll see her as a friend and then more agreeable to things. Sorry about his memory. He's on Aricept isn't he ?

On the subject of Aricept Mum doesn't seem to be tolerating the 10mg dose. Either that or a prolonged stomach bug. I rang the Memory Nurse and she's really kindly agreed to come to Mum's on Friday to review meds. SW said she thinks Mum is a bit depressed so she'll have a think about that. she doesn't want to medicate for her hallucinations unless she is distressed by them. Now I would be very distressed to wake up and find David Cameron at the end of my bed but she was OK about it ! She realised quickly he wasn't there which is good. Referral to day center being done as well. It's still really full on every day at the moment but hope it will calm down soon.

whataboutbob Wed 08-May-13 19:53:04

Hi Wynken yes Dad is on Aricept but misses most of his drugs. With dementia there seems to be malevolent ghost in the machine that screws things up. If i ring and say Dad it's time for your evening medicines, please take them, he'll invariably say " oh yes, i've taken them". Then I'll visit and see nearly all the week's drugs are still in the blister pack. I think he has a memory of taking the drugs at some point in the past, and thinks he's just taken them.
Anyway, Aricpet can cause stomach upsets so maybe that's what happening with your mum. I hope the memory nurse's visit is helpful.

WynkenBlynkenandNod Wed 08-May-13 20:13:29

Yes I absolutely know what you're saying about the taking of drugs , been through that. Mum had Carers already for her legs though so it was easy to get the drugs locked into a box for them to start dishing them out. When I say easy I mean that was the day I had to go to GP due to my blood pressure going through the roof, that kind of easy !

WynkenBlynkenandNod Wed 08-May-13 20:52:45

Whilst on the phone to surgery I summoned up my courage and asked for my cholesterol result. The GP had apparently signed them off as ok. I think they could be better and will work on that but am relieved to know. Blood Pressure is reducing slowly as well. I've sent myself a target of having good BP and cholesterol readings plus having lost a decent amount of weight by the time I'm 45, 18 months. Then if I do end up with Vascular Dementia I can at least know I tried to prevent it.

whataboutbob Fri 10-May-13 08:05:14

Yes wynken I know what you mean. Dad was v overweight in middle age and used to scoff at the whole concept of healthy eating.he smoked, and eventually got diabetes and at least 2 heart attacks. I think there s evidence of a link between poorly controlled diabetes and alzheimers (as well as vascular dementia). My cholesterol was a bit above ideal but the
HDL cholesterol was good so I m not too worried. And most of all I didn t have diabetes, unlike half my family. It s true, we can only do our best then if we still get it we'll know we didn t bring it on ourselves. Our parents probably didn t have this information and didn t realise what the risks were.

CMOTDibbler Fri 10-May-13 09:37:03

I'm also trying to minimise my risk - both my parents have type II diabetes and inject insulin, so I'm at high risk for it too. Am now at exactly mid BMI range and have great cholesterol levels, and intend to keep it that way now.

Am paranoid about not being able to find names or remember things though

Dumpylump Fri 10-May-13 10:00:44

Hi everyone, hope you don't mind if I join you? My dad was diagnosed with Alzheimer's a couple of years ago now, and is slowly but steadily getting worse. He and my mum still live independently in their own home, but are both in complete denial about the need for any outside help.
My mum will moan on the phone to me about how worried she is, and the things that dad has said or done, about how she can't leave him alone at all, he follows her to the bathroom, has the same conversation over and over again.....but when I suggest any kind of help - Carers, a much needed cleaner, a social work appointment - she won't hear of it.
Their house is not filthy, but definitely grubby, and badly in need of painting everywhere, but mum says it would be too disruptive to dad to have anyone in to do anything.
I live 150 miles away and have ds1 who is asd with associated learning difficulties, and dh who is in a nursing home having suffered a catastrophic brain injury in a car crash several years ago (totally outs self). I am guardian to dh and will also be to ds when he's older, so when it comes to sorting out dads paperwork and things, I know what I'm talking about - but will mum listen??
Anyway, that's me.....apart from my complete paranoia that I too am losing my memory, so glad that other people feel that way sometimes!

bigoldbird Fri 10-May-13 10:01:52

Hello, can I join in? Am at home today, off to Mum's flat in an hour or so as she is coming out of hospital today. There is supposed to be a care package in place, from previous experience with other relatives I have no confidence that this will happen but we will see.

I am so sorry that there are so many on this board, but good to know I am not alone.

We have been unable to get an official diagnosis for Mum, how she manages to pull out the answers for the medics I have no idea, most of the time she has no idea who she is and has often been brought home by lovely strangers because she has gone out and forgotten how to get home.

At the moment I am feeling completely overwhelmed by it all. I have siblings but they live 100s of miles away and though they come over occasionally the day to day low level worry is what I find most difficult.

Reading the experiences of others I realise I am actually quite lucky.

Numberlock Fri 10-May-13 10:14:22

Hello all, just introducing myself as a new poster to this part of MN. My mum is in residential care and I'm expecting a formal diagnosis of dementia next week.

Can someone explain to me the different types of dementia or point me to another website please?

Needmoresleep Fri 10-May-13 13:00:23

Hi to all.

This is a club none of us want to be members of, but comforting to know I am not alone. Less comforting to hear about others, whose burdens are so much greater than mine.

I cant claim any great knowledge but based on my recent experience (mum diagnosed with Alzheimers last week) the Alzheimers Society forum Talking Point is good, forum.alzheimers.org.uk/forum.php though slightly intimidating as some posters appear saintly, whilst the situations of others posting after a day "trapped" with someone with dementia, are quite heartbreaking. The organisation does not seem to care which form of dementia people are suffering from and I found the help line really helpful. Alzheimers also publish some useful and detailed briefing notes, which my mums local memory service kindly copied and sent me. I think these cover the various forms of dementia and also the likely progression.

(I found Age UK much more interested in getting my contact details so I could be added to their fundraising mailing list - but I may have called on a bad day.)

A confession also. My mother is extraordinarily good at hiding her lack of short term memory. I was quite mean at a couple of assessments, adding a couple of direct questions of my own "what are the names of your grandchildren" which I knew she could not answer. Once thrown she found it difficult to resume the facade and the assessment then better reflected her situation. (The psychiatrist who gave her her diagnosis was very good at gentle questions requiring factual answers, which confirmed the memory gaps. I wonder whether SS and others might prefer not to find problems.)

Given an Aricept prescription can make a difference to some, a diagnosis might be important.

Now to go back to the task of adding POA to various banks accounts. My fourth visit to one. If anyone else is frustrated with the process of taking over financial control, do say. I feel a rant coming on. The emotional and caring/medical side is one thing, but I get closest to meltdown when faced by jobsworth bank cashiers and utility call centres.

whataboutbob Fri 10-May-13 14:03:06

Hello to new joiners. With apologies to Groucho Marx nobody wants to be in this club, but it is a supportive place and I have found offloading and hearing other people's experiences to be quite therapeutic. Prior to this, with no friends in this situation, I was feeling quite isolated.
For the different types of dementia, I guess wikipedia could be a good resource, plus the Alzheimers Society- they have info on other types of dementia.
Bigoldbird I identify with the daily low level worry. It's debilitating. I just hate the sound of the phone ringing knowing that 9 times out of 10 it's Dad, or someone else who's concerned about him. I only have peace of mind when I'm uncontactable. Dumpylump a recurrent theme from many posters is the co dependent relationship between spouses when one has dementia. Woe betide anyone who suggests changes to their precariously balanced system for living. My mum died 18 years ago and in a weird way it's a relief she's not having to go through this, and I'm not having to deal with her stress and anxieties as a carer for Dad.
Finally Needmoresleep- something amazing happened last week- a very young bank employee was sympathetic and competent, and set me up for internet banking on Dad's account straight away. Then she revealed her Dad had suffered a catastrophic stroke and was at home with 24 hour care. She understood.

WynkenBlynkenandNod Fri 10-May-13 14:27:34

Hello to new people sadly in the same boat. Am back from attempt number 2 at Barclays. I was ready to kill the woman if she wouldn't do it today but then a strange thing happened, she was incredibly helpful. She's in her 40's with two sick parents, one terminally so. We actually ended up having quite a laugh.

However I haven't yet been brave enough to try any utility companies. Memory nurse coming in a bit, Mum still feeling sick despite stopping Aricept on Monday. Yesterday my DD was off sick again and completely neglected. Today DS had no clean school trousers. I've no idea how much homework he has. I spent ages cleaning putrid spuds from a cupboard. I don't think increasing the care package will work, she will still need me to do loads. Maybe not all the tin but when she's feeling under the weather.

I found some self contained flats attached to a home and would love for her to go into one but now she wants to stay at home. I don't think I can cope anymore and am hoping when she sees them Tuesday she'll want to move in whilst they have one available. That would be too easy though <sigh>

Needmoresleep Fri 10-May-13 15:07:34

The world has now divided into two. Those who understand, and those who dont. I dont have much moral high ground here as until my dad became terminally ill four years ago, I did not understand. Now I am ready to volunteer for some task force aimed at ensuring banking and utilities are old people friendly. Forget the idea of computer training. No help if you cant manage a TV remote.

With utilities, you can get some amazingly helpful people, like the Scottish BT girl whose nan was at about the same stage. Sometimes it appeared cultural. I had amazing support from a lovely British based West African guy who was clearly shocked that my mum had been living without heating, and that one of his colleagues had sold her some top of the range boiler which had the most complex set of instructions ever. This was needed as I was exhausted, camping in a chaotic flat in sub-zero temperatures. Ditto a couple of Asian bank managers who bent over backwards to sort things out telling me I was right to be looking after my mum. NatWest were lovely both my mums branch and the branch nearest me, with duty managers sharing their family experiences. Others less so.

(My mum was the ultimate carpet bagger with Building Society accounts everywhere, some now swallowed up by banks. I have a cardboard box of old passbooks and cheque books.)

Where I could on pensions, banking, insurance and utilities, I typed up letters and got my mum to sign. Self Certifying copies of the POA document takes ages, even if I wrote the text and she just signed each page. Having a solicitor do would cost a lot. Hence easier to take the original into bank branches, and no incentive to send a copy off simply to have a conversation with a utility call centre. Overseas ones were worst with the person on the other end of the line simply sticking to the script unwilling to consider context. (TalkTalk was the worst.) In the end I simply pretended to be my mum.

WBN. Again mean, but when my mother tried to change her mind on something important, I more or less told her the discussion was over. She had agreed and it was too late to change her mind. This inevitably caused upset, though she could accept I was telling the truth. Now though she is where she needs to be, and things are calmer. I provided her with a briefing note (which she read quite a lot till she lost it) which explained what was happening, eg to her car, to her old flat, medically, etc, and why we had come to the various decisions. I have now also given her, and me a bit of a break, which I think will help repair the relationship. Having her in the right place means that low-level anxiety has gone. It also means that she is no longer struggling to keep on top of things. I think this was really stressful for her.

(Sorry again it is really long. I am still processing a very intense few months.)

WynkenBlynkenandNod Fri 10-May-13 18:23:32

That's extremely helpful for those of us who haven't done all the finances yet Needmoresleep. It's going to be a slow process totally taking over Mum's finances I think as she's not prepared to just hand it all over but she did give me her post today to deal with. I can only imagine what you've been feeling recently.

A briefing note is an inspired idea. And with the copies it's ok for us to write the sentence on each page and for them to sign it ? I did try to get a copy from the OPG but they just refunded the money.

Memory nurse came out. Aricept stopping (she 'd already stopped) and once she stops feeling ill she's starting on Galatamine instead. If she's still feeling sick Tuesday/Wednesday next week I have to take her to GP. Apparently I have to put boundaries in place. I was explaining the DC's were getting neglected . Good thing is DD overheard me and does know I'm trying to get help. Problem is I can't insist she's moving as my Brother won't be on board unless she wants/needs to.

CabbageLeaves Fri 10-May-13 18:29:25

Some really tough things to read for me, when I feel I have all of this ahead of me You all sound really amazing. My fear is of being inadequate at caring for my parents. I feel selfish because I know I don't want to do it (but do want to because I care about them) if that makes any sense

WynkenBlynkenandNod Fri 10-May-13 18:41:55

I massively don't want to do it and have had enough. I'm happy to do medical appointments, finances and will speak to her daily on the phone . I don't want do anything else and am utterly pissed off with it all if I'm honest and on some level very resentful she refused to deal with high BP and cholesterol.

When I was DD's age, my brother was same age as DS. Mum used to bugger off to relatives abroad for the whole summer as her life was so stressful apparently and she had no sick relatives to deal with. That's another thing I'm resentful about. Oops, sorry, it's all coming out now.

CabbageLeaves Fri 10-May-13 18:51:41

smile

It's ok. There are things I can't put in print ...but.

Needmoresleep Fri 10-May-13 19:22:01

Same issues here, both with mother and brother. I decided that I wanted the family dysfunction to end with the current generation. A friend suggested that at lot of women of my mothers generation were frustrated and angry. You might be bright, and in my mother's case educated, but you still gave up a career on marriage.

In a way it makes things easier. I can do the practical financial and medical stuff and am not expected to provide emotional support. But sorting through a lifetime of stuff, plus her uninhibited outbursts and forays into the world of the past, have dredged up "stuff". Oddly I have found it healing.

On Lasting Power of Attorney, I dont know if it is OK for me to write and my mum to sign, but have done it like that. Lets see if DWP accept. With banks, just take in the original with passport and driving licence. They photocopy and certify and set up on their systems, either using a paper form or on-line.

I picked up a mail redirect form from the Post Office and got my mum to sign. So everything comes to me first. Not sure if she really realises but it makes it much easier. I can just get on with those things which my mother has lost the capacity to do, and she has essentially forgotten the battle for control.

WynkenBlynkenandNod Fri 10-May-13 19:42:57

Thanks, feel a bit better getting that out. Banks are both done now. I'm going to leave other things for a bit and then come back to it. It's the emotional support to someone who isn't entirely rational that I find so draining. And am dreading sorting all the stuff.

Very interesting about the being frustrated and angry. My career went down the pan when I got pregnant with DD just as I was about to start a funded Ph.D . She has dyspraxia and I didn't make it back and set up a small business which was intended to take me through to DS being more self sufficient which he now is. Then things were increasingly going pear shaped with Mum so my brother employed me very part time. At the moment I can't even do that. I'm 43 and have a sense of my life slipping away. I had just been looking at the local job situation as was thinking if I got a job someone else would need to deal with her. That's not good really is it but I'm not going to feel guilty as suspect I'm not alone.

In a way I'd love to go back to research though that ship has firmly sailed. If I did it would be something regarding the Psychological Aspects of caring for Dementia patients. As I type it I'm actually wondering whether once I've got a grip of myself, I ask the Memory Clinic if they have any research projects on the go I could help with in the future.

I'm very sorry, I'm still splurging blush

whataboutbob Fri 10-May-13 20:21:16

Hi wynken. It s not all over, please don t give up. Try and turn even this most difficult of situations into an opportunity for yourself. You got to PhD level before, you can do it. If it means writing a fab research proposal on Dementia carers- go for it. I ve been in counselling for a year and if it s only taught me one thing is that it s OK to want nice things for yourself. Dad rang just now, saying you're coming over aren t you. I said no,sorry I ve got things to do ( that is in fact, go to my favourite 1930s swimming pool and take DD1 to a birthday party on sunday). I don t even feel guilty. I ve done so much for him in the past 6 years, I need some nice things in my life not just constant work and worry. He ll be OK.

bigoldbird Sat 11-May-13 09:32:25

CabbageLeaves, you could be me. I really really don't want to do this, the trouble is, you see stuff on the news and read in the papers, and a poor guy at work has experienced, abuse of elderly relatives by the people supposedly caring for them. Mum cared for me when I was helpless and annoying, how can I leave her to people who may not look after her? BUT I would feel so much more kindly towards her if I didn't have to do it all.

My brother has power of attorney, lives 3 hours drive away, and won't spend any money on her care. If I ring and ask him to come over for a day to give me a break, or if I want to go out somewhere, it's a big drama. I would be happy for carers to go in and do the caring with me doing cleaning, washing, tea and chat.

As yet, she is independent enough to stay in sheltered accommodation. I was fairly horrified to learn the current care package is only to last 4 weeks. My great hope is that they will decide she needs a permanent package in place and then something will have to be done. I refused to do some things yesterday, because I don't want to get involved with too much care giving. I feel terrible, but I want the team to get a true picture of how she is.

Sorry, that was a bit long. Diversion tactic to delay going round there this morning. Oh dear, what a bad woman I am.

CabbageLeaves Sat 11-May-13 09:55:35

I recently cared for an elderly neighbour. Her deterioration from independent to death was weeks. It did focus my mind somewhat into what I might physically be able to manage in the future. I work full time. I really don't know how I will manage

bizzey Sat 11-May-13 12:12:12

Found you !!!!....I posted in chat last night and was guided over here by a lovely MNetter.

Dad was "officially diagnosed" yesterday with early "A"
My head is still in a spin and I need to take ds to a party so will come back later to post more..(think I am going to be on here lots !!!)

Needmoresleep Sat 11-May-13 13:12:55

Cabbage and others,
Have you read
The Selfish Pig's Guide To Caring: How to cope with the emotional and practical aspects of caring for someone: Hugh Marriott

Really worthwhile. It discusses the sorts of things people feel they can't discuss.

I hate to say it, but simply driving down every weekend to keep an eye on my parents when my father was terminally ill four years ago left me exhausted. I ended up getting run down and it took months to get over. I therefore leapt at the chance of voluntary redundancy (public sector cuts) a couple of years back, knowing work, kids and mother was one juggle too far. Part of the package was a career interview. The advice was strongly not to seek other employment whilst there was a crisis looming.

In my case my mother is wealthy. I even feel guilty writing this, but as a POA I charge, albeit reasonably modest amounts. Her first idea was to use a solicitor who would have charged a fortune, so she is much better off paying me. I did it, not so much for the money, but to help reduce potential resentment I might feel, given the bulk of the burden has landed to me. I did not see why I should also be the one to have to pick up costs (petrol etc) and suffer loss of earnings, as well as committing time and energy. My mother understood. The argument that worked for her, was that I needed to contribute something to my family who had lost out as I was effectively absent for 3 months. She is very much part of the generation who believes a wife's duty includes having a meal on the table each evening. To her it was astonishing that my husband had allowed me to prioritise her needs over his, and had been willing to take over caring for the kids. At the back of her mind, I suspect, was a fear that he might put his foot down.

I found it difficult to be assertive especially in a family context. Everyone's circumstances are different, but you are right to look ahead and to consider what boundaries you need to set, in order to achieve the solution that works best for everyone. I could not have made it work if I was trying to balance with f/t work or if I was seething with resentment.

WynkenBlynkenandNod Sat 11-May-13 14:01:56

Thanks everyone, I'm sorry about. Yesterday, I was having a meltdown. Poor DH yesterday's said yesterday that he can't see an end to it and I knew I had to do something. We had Mum having a hip op plus my Dad and MIL having cancer diagnoses within a month back in something like 2005. MIL was abroad and hang on for 2.5 years and that as its own particular brand of hell. Thn just as we were getting over that we were realising Mum was getting ill.

I've said to my Brother we just can not do this anymore. He's ringing her this afternoon and he's come round to the idea of the flat, though he wanted to give her a break before mentioning due to the roller coaster of the last couple of weeks. But realises we've got to act. I've told him to hold off talk of respite, big up the flat which we're seeing Tuesday and try to get her to think it's her idea to go into it. It isn't her fault this is happening and I don't want her coping with her diagnosis plus feeling responsible for my family falling apart. If she won't move in then we will have I force the issue of respite.

I think it was the Memory Nurse asking her what she'd do if she was scared in the night and her saying she'd ring me which tipped me over the edge. To those of you a bit earlier in the path then me, be very careful. I have always jumped into solving problems and I should have stepped back a bit. Lesson learned. Operation get my life back, though I know it's not the time to job hunt if I'm honest with myself.

CabbageLeaves Sun 12-May-13 17:07:35

That looks like a great book needmoresleep

I have experience of caring in a family context. As a child we had 3 grandparents move in, become bed bound then die ...next one would move in.... My mother was a saint. I know I am not

Good advice from both of you about managing it to everyone's best interests

Numberlock Mon 13-May-13 14:34:38

Hello all

My mum is having a mental health assessment on Thursday and I'm hoping (in the sense that it will mean she will be able to get the right care) for a diagnosis of dementia.

So a question to anyone else who has had a relative assessed for the same thing - what did it involve, what diagnosis did you receive and how did you adapt their care afterwards? My mum lives in residential care but they do not offer specialist dementia care so I would need to move her, based on the results of Thursday's assessment.

Actually, the current home do have some residents with dementia, but they cannot offer care for my mum's outbursts of aggression to other residents and do not seem to think any medication would assist with this.

Thanks in advance for any replies.

Beamur Mon 13-May-13 14:39:33

Hello, can I join in?
My Mum has recently been diagnosed with vascular dementia and perhaps some signs of Alzheimers - but she is still functioning very well (still working, in her own home, etc) but the prospect of what may be ahead is rather daunting - she is only 65 too.

Numberlock Mon 13-May-13 14:47:42

Hello and welcome Beamur. Could I ask what was involved in your mum's diagnose? And what is the definition of vascular dementia and Alzheimers? I'm new to all this and haven't got round to researching all the different terminology.

Beamur Mon 13-May-13 15:01:21

My Mum has a long term memory problem and her vascular dementia is linked to having has chemotherapy - so the bloods vessels in her body are prematurely aged. But her usual levels of forgetfulness changed and she seemed rather blank and unmotivated, plus she had some dizzy type spells - eventually she got her blood pressure checked at the GP's (and it was very high - not good for weak blood vessels) and was referred by the GP to a specialist memory clinic who have been helping to steer her back to better health. She's being treated for the hypertension, they also thought she was depressed and has had an MRI - which showed the vascular damage, I think for Alzheimers there are more tests, but the Dr she has been seeing says there are often both kinds at work to a greater or lesser degree. Treating her blood pressure should (hopefully) increase the length of time she has without too much more damage. The vascular dementia is caused by bleeding in the brain.

Numberlock Mon 13-May-13 15:04:46

Thanks for that, I wonder if the stroke unit assessment that we are going to on Wednesday might show she's had a series of strokes that could have caused the dementia?

WynkenBlynkenandNod Mon 13-May-13 15:47:39

My Mum's CT scan showed Multiple Infarctions I think it said, which was a series of small strokes which has led to Vascular part of her Dementia. I think the Consultant said it showed Involution which is basically brain cells dying if I understood it correctly, which indicates Alzheimer's. She also had questionnaires to complete as part of the assessment.

She did very very well on one called the MMSE, 29/30. However on the Addenbrookes she scored 68/100, where a score of under 82 indicates Dementia.

I'm still exploring homes for Mum but have found that aggression to other patients is the thing that a few homes have said they can't handle. Others have said they are trained to deal with aggression, it's part of the job so it seems to very much depend on the home. There is a term I keep coming across, EMI units, Elderly Mental Infirm. I think they are generally able to cope with pretty much anything thrown at them, does anyone know for sure about this ?

Mum's coming to look at the home with flats tomorrow. I'm not holding my breath.

Numberlock Mon 13-May-13 15:59:31

Hi Wynken, yes I have also heard the term EMI mentioned.

I am just starting the process of looking at homes that cater for dementia, specifically with aggression, and am going to see two places tomorrow.

So I will let you know how I get on and pass on any advice/tips.

whataboutbob Mon 13-May-13 16:07:14

Good luck Wynken, I hope it goes well, at least you have started the process and I'm sure your efforts won't be wasted. Even if it turns out the flats don't work out, you will have gathered information to help you narrow down to the best choice for her and eventually find something suitable.

WynkenBlynkenandNod Mon 13-May-13 16:07:49

Thanks Numberlock that would be very helpful.

For those of you with parents at home, there is a thing with council tax once a diagnosis of Dementia is given. They then come under the heading of something horrible sounding (Severe Mental Infirmity?) and if receiving a benefit, including Attendance Allowance, exemption from Council tax is given if living on own, or reduction if someone else in house. I think this does vary a bit from council to council.

Numberlock Mon 13-May-13 16:16:18

Is your mum in her own home at the moment Wynken and you're thinking of moving her into a warden-controlled flat?

PostBellumBugsy Mon 13-May-13 16:21:21

Hello there, another one to join this club. Sympathy to everyone, as it is not a club you'd ever want to join.

My Dad has Alzheimers and has had a couple of strokes recently, meaning he has vascular dementia also. He is 77 and my Mum who is 79 is looking after him with some help coming in too.

I am visiting every weekend after working full time all week & looking after the DCs on my own (single parent) and it is really taking its toll. I dread the visits. It really depresses me seeing them barely coping and knowing that all the help I can give is never enough.

My Dad is like a huge toddler. He has to be watched every minute of the day & the stroke has left him incontinent, so he wears nappy type things that need changing. Fortunately, he is not agressive, but he is exhausting to keep an eye on. My Mum is not in the best of health herself, but is still in full control of her mind.

We managed to get the highest rate of attendance allowance for Dad, as he also has advanced cancer, so at least there is a bit of money coming in which helps with the extra care they need.

My biggest worry is that they live in an old farmhouse (crumbly & dilapitated), which is completely unsuitable and isolated and I'd love them to move into something more manageable, but my Mum will not consider it as an option at all. Weary sigh.

WynkenBlynkenandNod Mon 13-May-13 16:23:17

Yes she lives on her own. We had drama last week when she was hallucinating people knocking on the door late at night and announced she wanted to go into a home. Looked but it's too early for the ones we saw. We did however find six self contained flats in the grounds of a nursing home. Meals provided or she could cook for herself, laundry and cleaning done, encouraged into the shower etc, trips out and others around. Then when she needed more help she could move into the main house.

If she became aggressive she'd have to move but I think it could give her a decent quality of life for a bit. And then I could have my life back which I know sounds selfish but I've had it at the moment.

WynkenBlynkenandNod Mon 13-May-13 16:27:24

Welcome PostBellum and I'm sorry you're in the club too.

Numberlock Mon 13-May-13 16:32:26

It would be great if you could find somewhere where she will be happy now and can also provide the specialist care she may need later down the line (including aggression).

That would be what I'd be looking for in your circumstances.

I'm in the situation of having to move my mum again after she's been in residential care for 4 years. With the benefit of hindsight, I would have moved her somewhere that covered all future options at that time. This move is going to be traumatic for us both, I can tell already.

I will let you know how I get on tomorrow.

PostBellumBugsy Mon 13-May-13 16:38:26

Thanks Wynken.

With regard to feelings, I go through a roller coaster of emotions from resentfulness at giving so much of my time, to intense sadness as Dad is slowly but remorselessly lost, to extreme irritation at how stubborn my Mum is, to moments of joy at Dad's small triumphs and brief moments of "appearance".

I also feel very sorry for the DCs who have to trek down to the arse end of nowhere with me to help care for 2 difficult old people!

WynkenBlynkenandNod Mon 13-May-13 16:40:16

Good luck, I'll keep my fingers crossed. I don't think I can find something that covers independence now but copes with aggression. All the ones that can cope with aggression have small rooms and offer a level of security that was depressing her at the thought of it.

I will keep looking in case I've missed something though. Can see that moving later will be traumatic but I've felt on the edge lately so would rather move her again if it came to it, once I've had time to recover, I think on balance.

PostBellumBugsy Mon 13-May-13 16:44:37

Numbers & Wynken - are you (or your parent) having to fund these places? If you are, would it be worth considering live in care at home? It can often come in cheaper than some kind of residential home or sheltered accommodation.

WynkenBlynkenandNod Mon 13-May-13 16:49:30

Yes Mum will be self funding for a Home (will sell house) but gets SS Care Package whilst she remains at home. I had it in my head that live in care is about £750 a week, is that right ?

Numberlock Mon 13-May-13 17:06:20

My mum has been self-funding for the last 4 years in residential care, Post. I haven't sold her house yet but will need too soon to raise more funds. I can't see her being able to return home at this stage, especially as she would still be 70 miles away.

Then I have the issue of what to do when the money runs out so need to find a new home that will accept SS funding too.

PostBellumBugsy Mon 13-May-13 17:06:38

Wynken, costs of care at home varies quite a bit. I'm researching at the moment, because it seems inevitable that somewhere along the line, we are going to need more than the 3 daily visits my Dad is getting at the moment.

I found one agency that starts from £62 per 24 hours all the way up to £800+ per week. There is a huge variation in costs.

bizzey Mon 13-May-13 17:15:36

Hello ...I am introducing myself properly now after my silly quick post on Saturday !
Dad was diagnoised with ?early/mild Alzheimer's on Friday,and I think it has taken me till today to get my head around it and lose the "heavy" feeling I had.

Bit of background...poor dad has already got allot of of medical and physical issues and this is one we just did not want sad.

He lives at home with mum but I am his carer (and unofficialy mums as well !)

We have a lady coming on Friday to talk to us about help and benefits and things...but I was just wondering how long it took for any of you to notice the tablets making a difference ...he is on Donepezial(?sp reading it from the photo copied hospital sheet).

I will and can post more ..but it might get to long for now grin

WynkenBlynkenandNod Mon 13-May-13 17:31:39

My Mum seemed to improve a bit after a week then a bit more round the 3 weeks stage on the 5mg dose Bizzey. We were told that we notice an improvement, just that she wouldn't deteriorate as much, but her Memory did improve. Unfortunately she's just come off as they were making her feel really sick, she's going to start Galatamine .

Thanks PostBellum. The ones who state their prices online in my area are £750 plus, maybe I need to ring more.

Needmoresleep Mon 13-May-13 17:38:38

Welcome, if that is the right word.

My mum has been on a Aricept generic like Donepezial (the Doctor told me that Aricept came out of patent recently, and so is much cheaper to prescribe; hence apparently the Government push to do more diagnosis and care for a condition which was previously thought untreatable) for a week.

She sounds so much better. She herself says she feels "perky". The doctor also said that the treatment often has a positive impact on depression, as people become depressed because they sense they are getting slowly but surely worse.

Prior to her taking it, both her physio and the sheltered home manager had said they had seen some quite dramatic improvements in some of the people they worked with. However others either had nasty side effects or no improvement. Lets hope my mum is one of the lucky ones. No side effects so far.

bizzey Mon 13-May-13 18:02:46

Thanks...my mum has said she thinks he is "perkier" already ...after 2 tablets !!...but I wonder if that is just relief ...I think he knew something wasn't "right" even though he would not admit it and it was mum and I who got the ball rolling with the GP and so on .

Different views on when to take it ..Doctor and pharmarsit said it did not matter ...leaflet and internet say night time ?due to drowsiness.

He had his 1st 2..sat and sun in the morning but I have told mum to start doing at night time now ...I suppose it will still work the same .

wynke...I scanned through the earlier posts quickly ...was it you who mentioned something about council tax help ?...If the form comes through with that title ..I had better warn mum...she is not going to handle that very well .

She is not a very "practical" person ...she worrries and always see the "black "side of things and would end up in a wailing heap on the floor !

Better stop now ! I tend to go on a bit !

WynkenBlynkenandNod Mon 13-May-13 18:38:26

Bizzey there is no way you go on long as I do ! Yes it says that on the form, I haven't let Mum see it and am going to march in with my POA and make sure all correspondence comes to me - I'd hate her to see it.

bizzey Mon 13-May-13 22:06:37

Well I told my selfish brothers tonight by phone as I did not want mum to have to do it as she would get too upset.

One said ""Well isn't that just old age ""....AHHHHHHHHHH !

Off to get paper bag to breath in now !!!!

Needmoresleep Mon 13-May-13 23:07:18

My mums doctor said he preferred people to take it in the morning. They are strong drugs and he felt they were better absorbed when people were up and about. Suits us as the carer was already coming in in the morning. I was told Aricept would not be prescribed unless there were measures to ensure doses were taken regularly. My mother has a nap after lunch anyway so it probably does not make much difference.

The attendance allowance needs to come through before considering council tax. I deliberately did not show the application to my mother as she would have been upset. I wrote it with the help of a care professional and it was accurate. However she would have hated seeing a description of her day to day struggle to manage set out in black and white.

PostBellumBugsy Tue 14-May-13 09:39:47

Second all those saying don't show the person concerned the attendance allowance form. We got the highest rate for my Dad and I completed the 27 page form & it was a very depressing thing to do. There was no way on earth I would have let my Mum read it.

Basically you are writing that the person is incompetent in all aspects of life & needs constant watching, care & attention.

My brother has power of attorney, so he was able to sign the form on behalf of my Dad, who can barely remember his name anymore, let alone sign it.

Hard to believe my Dad was still running his own business 18 months ago.

WynkenBlynkenandNod Tue 14-May-13 10:06:13

I have a feeling you can sign even if you don't have POA on the Attendance Allowance. Also Mum's was turned down initially despite help from the OT filling it in. We were told a lot are being turned down at the moment.

S eons said they are turning loads down first time round. A charity helped me write a letter asking for reassessment which was successful. The lady who helped said make it clear that the help has been going on for at least 6 months and that help is needed throughout the day. I'd written lots but she said the most relevant was needs prompting at regular intervals through the day to take fluid, particularly important as she's taking water tablets.

Does anyone know anything about this £108 a week for people in a nursing home needing care from a RGN? I assumed Mum wouldn't get it but one place said they claimed for everyone and hadn't had one turned down yet. That sounds a bit dodgy to me.

PostBellumBugsy Tue 14-May-13 10:25:19

Wynken, you can sign it without POA if the applicant cannot manage their affairs due to a mental-health problem or learning disability (which covers alzheimers or dementia) or they are too ill to sign the form themselves.

We got a supporting letter from my Dad's GP, which may have helped too.

bizzey Tue 14-May-13 12:01:55

Dad is already on DLA high mobility and middle care rates. The form arrived today to try and up it to high care rate...but I am confused with this Attendance allowence that has been mentioned....

Is that different to DLA care rate or the same thing just without the mobility component ?

The support lady is coming in on Friday and I just need to get my facts and questions straight so I undestand in advance .

I have told him I was going to try and up his money ....bless him he understood that ok grin and said write what you have to .

I looked into council tax reduction a few years back for him but the form gave us the impression we couldn't get it because the adaptions we had made to the house were not to be included ...ie stair lift ..bath thing and rails ?

I do not want POA for him (yet) as his bank statement reading keep him going and that side of things are ok ...just normal grumpy old man telling his wife to stop using the phone too much ....LOOK AT THE PHONE BILL !!! (They are on anytime plan and it is basicly the same amount each bill !!!)

He claims he never uses the phone ...but there are allot of mobile numbers to his sisters in Ireland !!

My "heavy" feeling has gone now thank goodness and I am back into practical mode....got a bit scared for a while how I was feeling...so not me .

I have a ds with SEN as well (they share the same birthday ) so I feel I just seem to be constantly dealing with hospitals/appointments and diagnose's
all the time and I am mum and dad's only support and i am a LP .

Wierd to say but I am looking forward to Friday's meeting as I hope it will open up new door's for dad and he will just not "vegetate away"

(Said I could do long posts grin )

PostBellumBugsy Tue 14-May-13 12:45:54

bizzey, I think DLA only goes up to 65 & attendance allowance if for over 65s. Not 100% sure of this, but I think that is the case.

Sympathise with you as I'm a single parent & my DS is ASD. It really does feel like a weary load sometimes most of the time.

bizzey Tue 14-May-13 16:59:07

I have phoned and checked....i think because he was on DLA before he was 65 he stays on it ....if you claim for care after 65 it is AA....I think !!!

Dad needs night time care now so going to try and get high care DLA.

I have got the form and wierdly know all the answer's for him....but am still struggling to fill in ds3's 1st DLA form confused

bizzey Wed 15-May-13 17:55:01

What a S***T dAY ....tHIS IS GOING TO BE LONG !!!...I will try and bullet point it .

1) DWP want me to go for some interview thing to check my eligability (sp I know)...I cant do the date/time on the letter due to alz nurse coming

2)He gave me a the week later (I am being very accomadating with my diary to sort this out )...I can't do that one as taking dad for ultra sound ..bladder and kidney's need investigating wink

3)Man said if I cant do either of these day's/times my benefits will be stopped .

I was made to feel like a fraudster...believe me I do not want to be on benefits and would love a job that gave me my life back again ....but what job is going to let me have all that time off every week to do appointments and check on him (medication/wee bottle/toilet clean up ......)

Never have I felt like I did today ...he was horrible and I burst in to tears when I put the phone down.

I have spoken to a manager person who is going to look into it but if I do have to have this appointment he will make sure it is with someone else but.....I am on Carer's Allowence and therefore reduced IC...all above board and declaired.

I know they have to check for fraud people and stuff......oh dear tears are starting now so might have to stop for a while...I will get a water logged laptop other wise ...

Bugger I thought I was made of sterner stuff than this ....but feel weak today

I do NOT want to have to be in a position that I have to look after my dad like this ...but I do ....and now they are making feel like I am conning the system ..

(said it would be long !)

Oh and I got a parking ticket today as well....disabled badge don't always work ...

bizzey Wed 15-May-13 17:59:34

Met him at hospital today with ds3...he intoduced ds3 as his ...nephew sad

Needmoresleep Wed 15-May-13 19:14:45

Poor you. I have had my share of meltdown days in recent months and fell into some pretty dark holes. Probably unavoidable. However on better days I was able to believe there were more kind people than jobsworths or meanies.

It all takes so long and what ought to be a simple task never is. Hang on in there.

WynkenBlynkenandNod Wed 15-May-13 21:26:10

Bizzey, have some wine flowers. Fully relate to meltdown, that was me the end of last week, I so relate to wanting my life back. Can you appeal the parking ticket ?

If we stand back and look at what we're coping with I guess it would be almost more worrying if we didn't meltdown every so often.

bizzey Wed 15-May-13 22:56:06

Wynken..you are right ...this melt down has been brewing....nearly 4 years I have been a full time carer...holding it together along with separation from ds's dad and new home and new life for the kids 's

Can't get dad to understand what these tablets are about ...ie trying to get him to tell me his "other effects "to them ....he is really grumpy and tired after 5 days of tablets ...AHHH he is not helping mum and I to help him

....deffo need a book on how to do this !!! """ How do you NOT get annoyed at your dad when all you want to do is help him and get him back to how he was"""

Needmoresleep Thu 16-May-13 08:25:23

Not what you need, but staff at my mums sheltered accommodation warned me that a recognised side effect of Aricept type drugs is aggressive behaviour. I dont know how your health authority monitor tolerance, but if there is a problem you should mention it as it could be drug related. We are two weeks in and experiencing the reverse. My mum's improved orientation means she is more in control and therefore happier.

I am coming out of 4 months of full on involvement, sparked by a fall. I got home and essentially took to my bed for a week, stirring only to download on MN. I was physically and emotionally shattered. You don't want your life. I don't want your life either.

Not sure what I can say other than take satisfaction from what you can, eg you got through yesterday. And prioritise looking after yourself. Is there any respite support available: day care centre, neighbours, friends, family. A sibling living further away could come down for a few days and give you a break, or even post you a cheque so you can enjoy a with family treat or a girls night out. Something that takes you away for a bit and helps you see the wood for the trees. Or allows you to remember who you really are.

In terms of books, Hugh Marriott was my friend. His Selfish Pigs guide covered the ground pretty completely. On dementia, I am in two minds about Oliver James "Contented Dementia" but found it useful to accept that the demented person was in a different reality and it was easier for you to go to them, than them to come to you. One result is that your expectations of what they will achieve in your reality, eg taking pills, being there for appointments, etc are reduced, so less disappointment and the ability to take practical steps to solve problems without relying on the unreliable. It was also useful to identify short standard answers to the ever repeated questions, which were accepted and closed down the topic.

I hope today is better. Blue skies and sunshine here.

Numberlock Thu 16-May-13 19:17:20

My mum has had two days of tests and assessments and has been diagnosed with moderate to severe dementia, a combination of frontal lobe, Alzheimer's and vascular. So at least now I have a formal diagnosis and can work out the next stage of her care, whether it is EMI or EMD.

She will now be seen by a psychiatrist to decide whether to prescribe medication.

Beamur Thu 16-May-13 20:01:07

Numberlock presumably this isn't a surprise to you - but it can still take a while to come to terms with.
My Mum has been taking the generic form of Aricept for a week too Bizzey and she hasn't been very well at all, although she seems to be feeling better now.

Numberlock Thu 16-May-13 20:10:33

No it's no surprise and I'm glad we've finally got somewhere. I just want to get her in a home near me ASAP now so I can spend more time with her and so can my boys.

WynkenBlynkenandNod Fri 17-May-13 07:24:29

Sorry Numberlock. Even when you absolutely know and are pleased a formal diagnosis has been given, it can still be hard to deal with as Beamur said.

Bizzey, how's you Dad doing ? Mum started her Galatamine yesterday (well she doesn't think she did but i did leave instructions for the carers)am hoping she can tolerate it. Needmoresleep I'm really pleased you are coming out the other side again, can only imagine how shattered you were.

It's been a much better week here. Mum seems happier and says she is more accepting of the situation. I haven't needed to do as much plus the increased care package starts Monday. Crisis over until the next one. The SW was right hen she said she wa having a blip. I think depressingly it was the Aricept.

Needmoresleep Fri 17-May-13 09:48:03

WBN. I may have spoken too soon. My mother sounded very down yesterday, completely unlike her, and thus confused. The carer said she had been difficult since Tuesday.

My personal theory, though I will speak to the doctor, may be that the improved lucidity has increased her awareness of her decline. This would be depressing.

It has brought home the fact that though you can solve all sorts of problems along the way: hoarding, allowances, assessments, care packages, accommodation, and, and, and, you cant do much about the underlying problem, which is the dementia. No solutions, just a long bumpy road.

Numberlock Fri 17-May-13 11:35:05

Thanks, Wynken.

WynkenBlynkenandNod Fri 17-May-13 14:22:31

Oh dear Needmoresleep that's not good sad. Depression is supposed to be common as people realise what's happening. My Mum rang my brother to ask him to order Omega capsules as she read they can help Vascular Dementia. I'd rather she didn't read up on it as it must be awful knowing you have it.

You're right, nothing changes the main problem . I've told my brother the current crisis is over, for now- with the emphasis on the for now bit. I'm in self preservation mode and trying to be more selfish and do things I want to a bit rather than running round after everyone else.

whataboutbob Fri 17-May-13 14:57:15

Sending supportive thoughts to everyone on this thread.
I invited Dad to come here for the weekend, at least in part to give my brother a break (he can still just about make the trip ,3 hours on public transport) but instead he came today, I was out and he scrawled a message on my "no flyers etc" card. Must have gone straight back home poor man (well i hope so anyway). Am in 2 minds about inviting him again for the week end. It could easily be another stuff up, for example him turning up when I'm taking the kids to drama club.

MrsFrederickWentworth Fri 17-May-13 15:25:57

Please may I join?

Ma has memory probs, epilepsy, heart, bp, blackouts, Is resisting a carer, a home and is behaving appallingly.

I have to rush now but will seek help when I get back

Numberlock Fri 17-May-13 17:49:54

Welcome MrsF. Hope we can offer you support.

WynkenBlynkenandNod Fri 17-May-13 19:24:15

Welcome Mrs F. Sorry about the circumstances you're here under.

Bob, your poor Dad. It's great he can still get on public transport. Can you invite him tonight to come tomorrow but with you ringing him before he is due to leave or your brother prompting him ?

Numberlock Fri 17-May-13 20:12:49

As an aside, I had a wry smile watching Corrie the other day and Gloria's comment that £80k would be able to buy her round-the-clock care for as long as she might need it later in life...

whataboutbob Fri 17-May-13 20:14:41

Hi I rang him he decided not to come, I think because he doesn't want to miss Church on Sunday.
There's a concert where we're due to meet 2 of his friends on Wednesday evening , so with a lot of planning and good luck we may just make that. DH should be in on Wednesday and if he's being kind he'll wait in and greet Dad while I'm at work.

WynkenBlynkenandNod Fri 17-May-13 20:19:12

That sounds like a better option Bob. Everything is always with a lot of planning though isn't it, flipping exhausting.

When we thought mum was going into a home the other day DH didn't sleep much one night as he said the numbers talked about are like telephone numbers, he's not wrong.

MrsFrederickWentworth Fri 17-May-13 23:37:35

Thank you.

DM has blackouts after any mental or physical exertion, but they don't show up on a heart monitor. She then becomes very confused indeed and her short term memory which was already poor is terrible.

She then is foul. She has been really nasty to DSiS, the local taxi driver, friends.

She refuses to gp into a home. She has finally recognised that she needs s full time carer, but yesterday tried to undo all the work that DSis had done about this. She undid the work that DSis had done arranging new carpets for the carer's room. She told the care agency yesterday we didn't love her and didn't care for her.

DSis lives in Switzerland and I live 200 miles away. We have suggested she live near one of us. She has refused. DH and I redid the house do she could live with us. She refused " because you are too boring".

I ring 6 nights out of 7. I write twice a week, though less now she has macular degeneration. My nephews go to visit her regularly.

She has been creating crises since Christmas. Every time one of us is leaving her she has chest pains and has to go to hospital. So we can't go.

Last year, I was going on holiday for a week for the first time for two years, having been bedbound for much of the year before. She rang me the night before to say she was in huge pain and had run our of pain killers and could I send some from where I was on holiday.

She is highly intellectual so if you have a conversation with her it sounds fine. She manages to persuade the doctors she is in her senses. But she cannot manage her finances or her life. And she claims we are hanging up and wanting her to go to an old peoples home or die.

I love her very dearly but she is not nice.

MrsFrederickWentworth Fri 17-May-13 23:39:12

Sorry, long rant. Ganging, not hanging.

Needmoresleep Sat 18-May-13 07:36:04

Awful. My mother is also very bright and has enough conversation to fool many people including professionals. It is impressive.

I have had her rant about her uncaring daughter in hospital waiting rooms and she is prone to telling any one who will listen that I am after her money. Staff where she is now confirm she has little positive to say about me.

Has your mother had a memory assessment. Where my mum is there is a new specialist memory service, which means staff have seen it all before. The nurse confirmed intelligence can skew the results significantly. Diagnosis was so important and her ability to hide the lack of memory so good that I threw in a couple of questions of my own when they were asking about her background. (Names of grandchildren! ) Not being able to answer rattled her sufficiently that some of the facade dropped.

Staff where she is now tell me that people who are trusted and close receive the verbal abuse. After three months my mums lovely carer is now reporting that my mother has become very difficult. It is as if her fighting for independence involves fighting those who are trying to help. Part steming from the fact the she does not remember asking for something or discussing something, so feels things are being done without her consent.

My husband tells me to ignore the aggression. She is ill. But not easily done. The lack of positive feedback, the loss of the person who was once there, the energy needed to resolve even simple things is awful.

I am lucky in that my mother's general health is exceptionally good, so I have been able to retreat. She now complains that she is bored or that her sheltered housing is a prison. 'They watch you all the time'. Old age is not fun but I can't solve these problems for her. She complains her access to money is controlled but has little else she can throw at me. I am told that after a while she should start asking to see me and should be nicer. Lets see.

In the meantime I am relieved to have a break. The verbal abuse was awful, worse on the couple of occasions when I lost my cool and shouted back. I dont envy you. Any chance of having her memory reassessed? And do continue to push towards a position where her care is sustainable and you can go back to being a daughter.

MrsFrederickWentworth Sat 18-May-13 09:45:31

It is so good to hear this, not that you are in this situation but understanding and someone who is a little further down the track than we are.

Yes, I've had the financial blackmail too.

She is seeing the top memory person in the area next month. Perhaps I should go with her.

I'll pass on what the staff say to DSis if I may, as she is being especially victimized by DM.

I do think she gets chest pains, BTW, but I also think.they are sometimes self induced. She has always been prone to self pity and is manipulative, but age makes it so much worse.

How are we going to avoid being awful when it is our turn?

Needmoresleep Sat 18-May-13 10:38:47

Go if you can.
1. You make sure she gets there. Though she wanted one on some levels my mum was also understandably nervous about the test, and the possibility of "failure". Left to her own devices she might have decided on the day not to turn up.
2. It was both interesting and useful to see where her problems lie, giving an insight into how she manages to so effectively to cover for her disability.
3. I got my own questionnaire where I was able to score things like her ability to cook, wash and dress, and which then got factored into the assessment.
4. By chance - my mother got confused on the date - I spoke to the clinic and was able to alert them to how my mum would present. It may be worth phoning in advance to alert them to the fact that your mum is intelligent, with good conversation and her disability may not be immediately evident. By being there I became the main point of contact and so the nurse then phoned me about next steps and I have an on-going point of contact. (I have POA.) During the test the nurse was quite firm when my mother, in an attempt to gain sympathy, started turning on me.
5. I did my bit of sneaky sabotage in terms of follow up questions where I recognised she had got away with a vague answer to the nurses first question. In the event the test was sufficiently long that she would not have been able to maintain her concentration. My experience is that once this goes it is evident to all that there is a significant problem. Indeed her concentration seems to be all that keeps my mother together. A mild infection and she was completely disorientated. Which may be the same with your mum. It helps no one if care professionals get the assessment wrong.
6. I got to ask some questions, eg was it reasonable of me to hold onto my mums cheque book. I now tell her I cant give her her cheque book as "the doctor said so", and as POA I am obliged to follow his advice.

By chance I had with me the 15 letters I needed my mum to sign, addressed to dodgy TV and Satellite firms who had sold her protection over the phone. When we got onto finance, she came out with the cheque book complaint. I brandished the letters as proof that my mum had a history of giving her bank details to people over the phone, and that she was financially vulnerable. If you have similar issues, whether health, personal care, getting lost or whatever, having evidence or examples might help.

My mother was never going to be a sweet old lady. She is too feisty for that. What we have had is a four year battle for control. It was clear she as not managing yet I had to hold back for three years and wait for the crisis. Once this happened, I needed to ensure her situation was sustainable. Having accurate assessments, and support from health professionals, was really important. Also people have gone out of their way to be kind to me when my mother has been nasty. (She is often worse when she has an audience.) This really helps. I suspect it is quite a common problem.

The staff say that in time the problem will diminish. Sadly as time goes on she will give up her fight for independence.

I now feel I need to work on my own personality weaknesses. Dementia seems to accentuate the worst of people's character quirks. The more practical solution will be to ensure everything is in order very early so that my kids can simply get on with making decisions. I am hoping by doing the right thing by my mother, they will understand the need to do the right thing for me.

(Sorry it is so long. I am still off-loading. Best wishes to your DSis. Dealing with savage and personal verbal attacks from someone you are trying to care for, really undermines your resilience.)

MrsFrederickWentworth Sat 18-May-13 16:35:07

Need, that is fabulous advice.

We are do faced the with most of control, loss of independence, loss of memory, aggression space.

Thank you.

whataboutbob Sat 18-May-13 19:18:39

Mrs F sorry to hear about your mother's hurtful behaviour, it must be so upsetting. I don't know if my dad will get like this, i suppose he could when the time comes for me to take some tough decisions eg he can't live in his home anymore. Was your mum like this before she became ill or is the aggression and attribution of bad motives a new thing?

bizzey Sat 18-May-13 20:11:33

Good day and bad day yesterday....A lovely lady who dad and I met last week at the hospital when we got the news came for a home visit.

I had already pre warned her not to keep using the "A" word in front of mum too much...and she was fab;

But when she went mum just broke down and sobbed sad...I think it finally hit her.

But lovely lady was so helpful I felt it was a good meeting.

Getting mum through this is going to be harder than getting dad through it.

We stayed with them last night as I did not want mum sitting on her own in a dark place feeling low.......but it meant I forgot about the time of a party I was supposed to have taken ds1 to today......he did not go.....crap mummy sad

WynkenBlynkenandNod Sun 19-May-13 09:11:25

I can't add anything to Needmoresleep's excellent advice. I definitely needed to be at Mum's assessment, the Nurse would watch me for a subtle nod or shake of my head when Mum was answering questions and I had a questionnaire as well.

Bizzey, I'm so sorry, that must have been really hard seeing your Mum so upset cand you are not a bad parent, you'rea parent doing your best is very very difficult circumstances. My DC's have definitely been suffering recently.

bizzey Sun 19-May-13 15:07:39

wyken thank you for your kind words...2 parents and 3 kids to look after is going to be hard....

I am sitting here now watching my HOT white wash going around....trying to work out what the suspicious GREEN thing is that is in there ....how did that get in !!!!...oh dear spotted something RED now as well......pink school shirts it is then grin

Deffo agree with needs advice of going to the appointments....they really value other people's view.....be it wife/husband/child..carer...In our first 10 min chat I think the doctor picked up on the fact that dad was not answering the questions correctly...(I am in my 20's according to dad grin !!! (46) )

Idid feel sorry for him when the doc asked him what medication he was on ///I butted in and gave him a list and said I doubt if anyone could remember all these of the top of their head !!!

Going back to the 1'st app....dad circled answer's while in the waiting room...I let him do it but secretly put an * on what I thought the answer should be ....but while the doc did cognitive tests on dad I was taken to another room and filled out a different form.

I t was a bit tricky as you only had a few options to circle......rarely/sometimes/always...(or something like that).....I felt dad was in between on some of them so I marked the gap in between instead !

I think the most important thing to remember is that while we are filling these forms for people we love we do have to be honest otherwise the doc will not know if the medication is working.

I hated having to bring up dad's aggression in public and felt like I was being very disloyal to him.....but it was one of the thing's that mum espeicialy and myself were dealing with ...and it was so out of character for him .

He has had allot of medical issues over the past years and we thought it might be depression and we knew we had to get it checked....but GP knows dad and put us on this route ....for want of a better word.

Still confused about this POA thing....I would feel I would be taking his last bit of independance from him ...might leave it for a while ....too much to take in at the moment.

Hope you all have a lovely Sunday

When ds1(who is now talking to me after yesterday's party fiasco ) has finished his home work we are going up there for tea.

Need the washing to finish first though to see the colours !!

[Flowers] to you all

MrsFrederickWentworth Sun 19-May-13 16:38:08

Thanks for this.

Yes, she has always been manipulative which I put down in part to women of her generation not being able to ask for things directly, and she hates not being independent and in control and can be difficult. But I think need's dx describes it absolutely.

I already go to DH's consultant, Ds's one, so, hey, what is another? Just 200 miles...

How I hate being sandwich generation. I think I might name change and become Violet Elizabeth Both instead.

Our poor parents. So awful for them.

Yes, Need, you have inspired me to start throwing things away. And work on being a sweet old lady. Like Miss Marple.
Would do a smiley but on phone...

MrsFrederickWentworth Sun 19-May-13 16:39:01

Bott, not Both. Bother predictive text.

Elasticsong Mon 20-May-13 09:01:53

Hello all... Have been absent for a while due to overwhelming life stuff. Feel a little more even keel now.
Mum had two dementia screening blood tests, both of which came back negative. She's proving to be a bit of a mystery because she doesn't really have memory problems as such but exhibits other dementia symptoms - word-finding, fiddling with things, paranoia and a kind of shuffle when walking etc.

After much shouting on my part, she had a best interests meeting and a wonderful social worker and CPN moved her into the home of our choice for a further fortnight of assessment. That means she has had 5 weeks of paid-for care so far- a relief for my dad who's worrying himself sick about the whole finance issue.

Wanted to let you all know about this:
http://www.dementiacarematters.com/d5.html

The home Mum is in is one of these and I can't rate it highly enough. A relative of ours came to visit and she used to inspect care homes for a living. She (and two nurses, a SW and a CPN) advised me to fight for mum to stay here because it was quite exceptional. The care is tailored to dementia and the residents individuality and personality is truly taken into account. We were so lucky to have called them very shortly after a room had become available. If my mum has to live somewhere other than at home, then this. Is the place for her.

Numberlock Mon 20-May-13 14:07:59

Hi all, I have a question please.

My mum was diagnosed last week with moderate-severe dementia, a combination of Alzheimer's and vascular dementia. I spoke to whoever carried out the assessment and they said she would have a follow-up visit today when they would discuss medication. They feel this would help manage some of the symptoms, in particular the aggression.

However, my mum refused the medication so they can't prescribe. This seems ridiculous, she didn't have a clue what they were talking about.

Has anyone had experience of getting this opinion overturned?

Needmoresleep Mon 20-May-13 16:30:04

Poor you.

There is an article in this week's New Yorker about dementia care. Their approach sounds positively stone age compared with ours. (Over medicalised with lots of restraint.)

The cost however, is the frustration when dealing with issues where you might know what is best for the "client" but they wont go along with you, sometimes expressing a different view form that expressed only a few minutes before.

I dont know when someone with a care POA can take over. The Alzheimers Society helpline would be the people to ask. If there is not a POA I doubt anyone would overrule your mother and you would have to rely on coaching her in advance. (If medication is what you think she really wants.)

Numberlock Mon 20-May-13 17:38:25

Well a couple of phone calls later it has been clarified that she accepts the medication to cope with the agitation/aggression, it's the medication that might help with memory that hasn't been prescribed.

There's so many people involved it's hard to get to the facts sometimes.

Numberlock Mon 20-May-13 18:20:41

Can someone clarify the difference between EMI and EMD care homes please?

WynkenBlynkenandNod Mon 20-May-13 18:51:28

I'm really sorry Numberlock I don't know on either the Meds or the homes. Hopefully someone else will but if not Needmoresleep's suggestion of the Alzheimer's society is a very good one. Sounds like you're having a miserable time , sorry flowers

Numberlock Mon 20-May-13 18:55:23

Thanks so much. I will call them tomorrow.

WynkenBlynkenandNod Mon 20-May-13 19:56:14

Bugger. Had a call from Mum's neighbour to let me know she'd had a solar panel company in the house , he'd been taking photos etc. Rang Mum, no answer until she finally did after a few goes. Said that at pick up people were saying about a solar panel company doing the rounds, we'd just had them, wanted to check they hadn't bothered her.

Oh no she says, they haven't been here. Not much I could say to that without grassing up neighbour . Who knows if she's signed anything .

CMOTDibbler Mon 20-May-13 20:11:19

Does the neighbour know who the company is? If so, phone them, tell them your mum is not capable of making a decision or commitment and if she has signed anything to tear it up immediatly and not call again. This tactic has worked for dad when mum has got hold of the phone

WynkenBlynkenandNod Mon 20-May-13 20:28:30

No, unfortunately she forgot to take the name so I am none the wiser. A CCTV camera is going up soon which we hope will be a deterrent. I am eating cheesecake .

ssd Mon 20-May-13 20:31:26

wynken, if you go to your local council you can get a sticker for your mums fron door saying "no cold callers", it does put a lot of them off

WynkenBlynkenandNod Mon 20-May-13 20:36:20

There's one up there SSD, we've got one too, people ignore them. Neighbour didn't say she'd had them at her door too do my brother and I think she sent off for them to come from a leaflet or an ad in the paper.

She did say to me recently that there isn't enough info around about solar panels. Brother rang her and she said I'd rang her and been short (ran out of things to say when she said no they hadn't been . She told him no one had been. Oh well.

ssd Mon 20-May-13 22:12:33

sad I've got one too, they still come to my door too.

I went out to my mums once, she was in hospital but forgot to take anything with her...so I went out to get her things. I found a big box of Victoria Principle anti ageing products my mum had ordered from QVC. She couldnt remember anything about it, lost the receipt. Getting it sent back was murder. Another time a lovely man came to hers and almost sold her a brand new stairlift. I was shouting down the phone DONT SIGN ANYTHING when I realised what was going on. She told me later he heard me shouting on the phone.!

People are desperate to rip off older people, its immoral.

ssd Mon 20-May-13 22:13:12

BTW she didnt have dementia, she was just old

ssd Mon 20-May-13 22:16:10

you know, at the end of the day we just need to keep fighting for our mums and dads, no one else bothers and they just get passed along

so very very hard I know

WynkenBlynkenandNod Mon 20-May-13 22:36:52

Thanks SSD. We're lucky with the neighbours, they let us know if someone comes. Really ironic, not that long ago she wouldn't open the door to anyone.

fridayfreedom Mon 20-May-13 22:42:11

Try contacting trading standards. Our local dept has a vulnerable persons dept and are excellent with these cases and getting money back

WynkenBlynkenandNod Mon 20-May-13 22:59:02

Thanks Fridayfreedom. She does have a dementia diagnosis which I'm hoping will help. It's just I don't know which company it is and if she's signed anything. I would have sworn she wouldn't but now I don't know.

The POA came through recently do I am legally obliged to protect her financial interests. Thing is although I've gone into the Bank with it I haven't received confirmation it's been done as it had to be sent away. Her building society were much better..If I ring the Bank tomorrow do you think they will talk it me and can I ask them to do something like ring me if any large cheques have been written and if any new direct debits have been set up ?

I'm tempted to say it her tomorrow someone saw a Solar Panel Company takin photos of her house and say it was a parent form DS's school or something as I don't want to grass the neighbour up. I knew the few days of calm we had last week wouldn't last.

fridayfreedom Mon 20-May-13 23:11:54

Might be better to go in in person and take a copy of the PofA with you. Trading standards put a block on the phone for cold calls for one of my patients. There are also some devices you can plug between the socket and phone which block most of these numbers. Don't know the name as I only just learnt about them. Try google.

WynkenBlynkenandNod Mon 20-May-13 23:20:26

Thank you, will Google. I'm going to ring the lovely lady I saw when I went in with the POA the other day. I'm going to the Chelsea Flower show (massive treat for me and friend whose Mum died recently) this week and have stacks on.

No wonder my dose of blood pressure meds had to go up.

Needmoresleep Tue 21-May-13 07:54:37

Enjoy the flower show.....

I've been here. Not workmen, as my mother was always reluctant to allow anyone into the flat, but TV, phone and mail selling. Up to 20 pieces of Junk mail a day, lots of phone calls mainly from the Philippines, a spare room full of 'stuff' still in boxes. So more advice if it is OK. (I realise I can sound bossy.)

1. Get a mail redirect form and get your mum to sign. (Probably quicker) Or use the POA section. Door to door salemen need to write offering a cooling off period. These people are leeches and sell details on. If your mum is financially vulnerable it can escalate fast and causes huge anxiety.
2. Sign her up for the telephone preference service and the mail equivalent. It wont do much for things she has asked for, eg by not ticking the box saying details should not be sold on, nor for things origionating from overseas but it is a start.
3. Speak to the local Citizens Advice /Consumer Protection people. They were very good at helping me draft a letter to the people who sell satellite 'protection'.

Control of finance has been the biggest area of conflict between me and my mum. DB contacted me again last night saying she was complaining she did not have any money. (Not true. She puts it in a safe place and then cant find it. Plus there is more locked up with her pills that she resents having to ask for.)

This is the one area where I have really put my foot down. It is complicated and time consuming, as you are discovering, to unravel poor decisions made by a financially vulnerable person. The satellite protection was multi year and would have bled her dry. She must have spent £000's on Vital Nature pills. Given the level of conflict I have been very careful to check with ebery professional we come across and they all confirm I am taking the right approach. She has lost the capacity to look after her financial affairs even if she does not recognise this. As POA I have an obligation to protect her.

Not much fun. This role reversal thing is horrid. And I do wish DB would engage brain. He feels he is protecting her by listening and passing on her complaints. I realise she is upset but dont have much option. He would certainly complain if I allowed her to be fleeced by faudsters.

CMOTDibbler Tue 21-May-13 10:59:26

Wynken, hope you are having a lovely day out at the flower show.

Needmoresleep, would you like to bash your brothers head against my brothers? The stress relief for us would make more contribution than they've managed.

Todays thing is that mum, having always slept fine, is now waking dad up in the night - but is sleeping anywhere in the day and unrousable. And isn't eating - everything 'tastes horrible' or 'my mouth doesn't like it' and the food just gets flicked. He's at the end of his tether as he takes all the things she says personally. I've told him to phone the GP and get an appointment to talk about it all. Hopefully he has, but will check in later.

A big up to Waitrose though - he's been staggering round with his walker, and the nice lady on the welcome desk called him over last week and suggested someone could wheel him round in a chair with attached trolley, get all the things he needed down, bag it up and put him and shopping in the car. And he's accepted that help and has been doing so since.

PostBellumBugsy Tue 21-May-13 11:18:28

Just popping in to say hello. Sympathise with the selling to old people stories.

Dad has just started answering the phone again after his stroke & Mum says it is a nightmare. He has now a small repertoire of phrases: "yes, indeed", "lovely", "of course", "I think so" etc. None of them mean very much and he can't string a sentence together, but at the end of the phone with a salesman, he sounds functional. They've already had an issue where British Gas phoned to change their tariff & he somehow agreed to a worse deal then they currently have. Mum has taken to sprinting like a 78 year old whippet to try and get to the phone before him, as she is terrified of what he is saying "yes, indeed" too. As soon as he has puts the phone down he has no idea who he has spoken to or what he or they said.

We are going to ask BT to make them ex-directory. Does anyone know about how you get yourself on some kind of non-telephone marketing phone list? I'm sure I've heard about this, but can't remember what it is called or how you do it.

CMOTDibbler Tue 21-May-13 11:59:45

Its the Telephone Preference Service.

Would a cordless phone help your mum? Then she could just carry the handset around with her in the house so she wouldn't have to run, and he couldn't access it

PostBellumBugsy Tue 21-May-13 12:22:49

Thank you CMOT - will be looking at that preference service.

Cordless is a possibility. I'll run that by Mum too.

WynkenBlynkenandNod Tue 21-May-13 12:42:44

Thank you, that is hugely helpful. I'm not with it, Flower show's tomorrow. Today I am doing a good impression of a headless chicken. Called Mum and said someone at school had seen solar panel company outside her house taking photos. She claims she knows nothing about it. Called neighbour who said there is a small chance it was next door the other way but she had seen him walk down the side of Mum's car, had parked outside her house (door number very visible to road). Other neighbour's drive is not next to Mum's if that makes sense. Wherever he was he for about an hour then came out and looked like taking photos of Mum's house though apparently is conceivable it was the other neighbour's . Neighbour who alerted me is going check if they did go to other neighbour and let me know later.

Brother convinced it was the other neighbour as said we both spoke to her and she's adamant she knows nothing about it. Wish I could share his confidence but experience has taught me to be sceptical. It's the fact she said there isn't much info on solar panels available a few weeks ago which worries me. Rang bank and they want me to sign to say she isn't mentally capable once they heard diagnosis of Dementia. No way will be brother go for that yet though if it transpires solar panel guy wasn't at neighbour then he'll have to rethink. On plus side POA now set up and bank card on its way. Mum now thinks the Carers are telling people she is on her own so they know where to call. Wants to change care agency to one people say are good. That is the one where she sent the co-ordinator out nearly in tears last summer and rang to complain about toe nail lady. I suggested she speaks to SW if she wants to swap.

Then Dad rang to say he's broken his little finger, has an increasingly dodgy hip and my Aunt is in hospital with breathing difficulties . Maybe the brothers could have their own thread to complain about annoying sisters ?!

Sorry I have splurged again and thank you all for listening.

Needmoresleep Tue 21-May-13 13:54:25

What is it with these brothers. Mine appears to be in a state of denial, actually not too hard if you simply allow her intelligent sounding conversation to float over you. But she has no short term memory, forgets things she was told 10 minutes before, and loses any or everything. Dementia is a disability, but a weird one because the person only has limited awareness of what is happening.

WBN - I lost it as well when I reached the reference to the toe-nail lady. There are so many strands in taking charge of someone else's affairs, but I had not thought of feet. However I have the optician coming in tomorrow.

The Waitrose service sounds great. Customer services at my mums Tescos keep a list of people who might get lost or confused with their names and addresses. One other tip I was given if you have one near you, and your DP can still use an oven or microwave is Cook. www.cookfood.net/order/ The person who told me said she found it a good way to get her 90 year old mum to eat a wholesome meal every day, without using the stove top. Not cheap but probably cheaper than buying individual ingredients for one.

The firms that prey on the elderly are quite shocking. These include some charities who must target older people and send them all sorts of stickers, pens and cards in the hope of obtaining donations. We did a bit of research and discovered several of the companies offering TV, domestic appliance or satellite "protection", different from "insurance" as you don't get FSA regulation, were actually the same company. I got another to admit they had bought my mums name from a third party - presumably a specialist list of vulnerable people who can be conned.

I drafted a pretty fierce letter listing the avenues of complaint I intended to pursue. I did not get much money back, but all decided not to enforce the full three year agreements. PM if you want a copy.

My attitude on finance/administration has been that I either do all or nothing. I don't think you can really just "help". Not if someone is vulnerable, and wont admit or remember what they have done. (I recognise the odd clues which indicate something is wrong, plus the unwillingness to admit that you have been pressured into buying something. It is difficult for someone who was previously competent to admit they have been taken for a ride. In your place I might see if I could find any correspondence.)

You don't also have the time to sort out any mess post-facto. My mum had scribbled all sorts of sad notes "I must look at this when I am feeling less confused" or "I gave them my bank details, I hope they are not conmen". She must have been very stressed.

I would tell the Social Worker about your concerns and ask if she feels that your mother is capable of managing her financial affairs. If she says you should be taking over, for her protection, then tell your brother and the bank.

WynkenBlynkenandNod Tue 21-May-13 14:07:04

Ok, well there is a good conclusion to this saga, Solar Guy was visiting her neighbour on the other side grin Sorry about all the drama. My brother said it would be, hate it when he's right. I'm taking bets on whether he will come back to UK for Mum's birthday in the Autumn, we haven't seen him since Spring 2009, though speak all the time.

Similar thing going on with Mum's taste. I organise Cook to deliver, though she's complaining about that. I do need to sort the finances. The POA has only been through this month so I'm in the process of sorting. After half term I'm going to go round and try to commandeer her paperwork, can't face it yet.

That is impressive of Waitrose, makes me want to go to my local one more often. I am so relieved Solar panel drama over I can't put it into words.

PostBellumBugsy Tue 21-May-13 14:11:45

Another one with a brother in denial too!!!! He is good at doing the physical stuff, so will happily mow the lawn, fix things & move furniture around but just will not accept how precarious the situation for our parents is or think long term.

He always sides with my very stubborn mother, who is insistent that they stay in their crumbling, isolated, perishingly cold farmhouse. My mum thinks the sun shines out of his nether regions, so it is very difficult to get her to agree to anything that he doesn't agree to.

He also had the nerve to tell me that Dad's deterioration was much harder on him, because Dad was his role model. Given how unbelievably rude he has spent most of his adult life being to my father, I was tempted to rip his head off - but somewhat wearily suggested he should live up to his role model and go and mow more grass instead!!!!

Needsmore, I do most of the financial admin for my parents now. My Mum is still all there mentally, but just can't cope with it all. I've set up a filing system (threw away nearly 20 years of useless paperwork) and I know what needs keeping tabs on. Every weekend, I go through the mountain of unopened post that is spread all over the kitchen table and throw 80% of it away (they must be on every catalogue mailing list in England) and deal with the rest.

MrsFrederickWentworth Tue 21-May-13 23:08:30

It's such a relief to hear all this and be able to rant and vent.

And all advice gratefully received, no one should ever be worried about being boss.

Am about to do the telephone reference for us, let alone ma. We did have it but it appears to have lapsed. And of course it doesn't cover abroad.

It's grim, isn't it.

What we did, because ma refuses to trust us, is employ someone for 4 hours a week to help her do her bank accounts, pay bills etc. It worked for a year and still helps a lot as this person works out things and ma feels more in control, though we also have a poa.

bizzey Wed 22-May-13 11:25:57

Hello all, just a quick up date ...Dad has been on his tablets about 10 days now and mum has noticed a BIG improvement in his sleep.

He has them at night and they must send him off into a wonderful land of nod ...which in turn has made him less tired during the day ?...or the "false chemicals "are doing something?

Interesting small artical in a paper the other day about sleep and Alzheimer's (oh crikey I can spell it now without having to look it up !! grin ) and our hospital asked mum to fill out a questionaire about dad's sleep patterns over the past 40 years ...they are doing research into it .

Mum is still low ...even though she can see an improvement she is a very negative person (sorry mum but it is the truth !) and is just wallowing for want of a better word at how it will be "at the end ..when he is really bad" (her quote not mine !)

I am going to try and organise some councelling for her but I am worried the support groups might have a more negative impact on her at the moment ?

DS1 is now talking to me again after my complete cock up of taking him to a party last Saturday. I t his birthday next week so I am off soon to book him some lanes at the bowling place to make up for it ....guilt is very expensive.

Ironic isn't it ...I "forgot "the time of the party due to dealing with dad's Alzheimer's diagnosis's !

CMOTDibbler Wed 22-May-13 13:10:33

Bizzey, the better sleep sounds great.

MrsFrederick, how did you find your mums helper? That sounds like a great solution

Well, at last, mum is going to the memory clinic for some help. Or rather, hopefully some help for dad. The GP they saw yesterday was very kind

Bless him, they both had their retinal photos done today, and you can't park at the optician. So he parked as near as possible, put her in her wheelchair, got his three wheel walker out, and pushed both along. The opticians were lovely and plyed them with tea while there and diverted mum from requesting new glasses 'because her eyes didn't work'.

PostBellumBugsy Wed 22-May-13 13:22:25

bizzey, you may have said, but which meds is your Dad taking?

Mum is having terrible trouble with Dad waking at night. He is taking Aricept (or the generic equivalent of it) in the morning at the moment.

Needmoresleep Wed 22-May-13 14:00:15

From Wikipedia

"Sleep spindle activity is associated with the integration of new memories and existing knowledge."

It seems to be a brain activity that happens during some sleep cycles, and there was some stuff recently about how the absence of such spindles might be linked to the onset of dementia. Obviously in my advanced state of dementia hypochondria this has me worrying about getting enough sleep. Nothing more certain to bring on insomnia.

Actually a new theory. We lose sleep worrying about our parents, we get dementia through lack of sleep. Then our children lose sleep worrying about us. So a pattern emerges.

PostBellumBugsy Wed 22-May-13 14:26:37

Needmore - step away from wikipedia! grin. Your post make me chuckle though, because it evokes how bonkers trying to care for a parent or parents with dementia really is.

Needmoresleep Wed 22-May-13 15:11:47

Or how bonkers it makes us...

bizzey Wed 22-May-13 17:23:01

need grin thank you for making me smile todat !!

post he is on Donziapal ??sp I do not have the packaging but it is a named one on the list.

He did sat and sun as AM's (first dose's ) then I put him om to Pm's on the Monday. He had a "bad day " on the Wed which even he admitted to ...major breakthrough...but he seems to be ok now .

I think he is accepting he might have good days and bad days ??

PostBellumBugsy Wed 22-May-13 17:29:32

Thanks bizzey. Dad definitely takes his meds in the morning. I might suggest evenings, as the night time waking is getting so bad that Mum is thinking she may have to get a carer to sit with him 2 nights a week, just so she gets a whole night of sleep every now & then. I'll double check what he is taking & if Mum is nervous about me recommending the change, she could talk it through with the GP too.

bizzey Wed 22-May-13 18:02:24

post...from the info I got from the support nurse it is a trial and error type of thing ,but remember if he switches from eg a thur am to a fri pm he is going a bit longer without his meds in his system which might affect him for a bit ...might need an eye on ....but mum is so pleased not to be hearing "small cup of tea and a bit of cake please " at 11.30 pm !!!

MrsFrederickWentworth Wed 22-May-13 20:03:52

We asked around the village to find a helper, as that's the way that two relatives had also done it.

But I did think of seeing if the age UK befriending service would do it, or asking at a local primary school, because it would suit a mum in terms of time or asking at the local drs surgery. You just want someone sensible, reliable and discreet, pref someone who is connected to someone your DM/ DF knows.

WynkenBlynkenandNod Thu 23-May-13 21:05:26

That is a good solution getting someone in to sort bills. I'm pretending that aspect isn't happening until after half term. Someone has just text inviting DS to Legoland in half term which is a huge help.

There's quite a collection of us with parents recently on Meds at the moment then ? And chugging off to the Memory Clinic. Galatamine going well so far but very early days.

Had a call from the Day Center today about Mum going. It definitely reminded me of starting DD at nursery -'will she be happy about coming here' er no probably not. She's going for a visit to start with.

We had a lovely day at Chelsea yesterday, shut away for hours surrounded by plants, totally removed from the world of Dementia except for one stand in the Great Pavillion. My friend's Grandmother has been really ill and also just referred to Memory clinic. We both needed a break and it did bring it home to both of us how important it is, if possible, to remove yourself from the whole thing for periods of time and switch off from it.

bizzey Thu 23-May-13 23:07:41

Wynken...so agree that we all need a break from thinking about dementia for a while ....we are 2 weeks in to dx..and it is not helping that it is dementia awareness week grin

Adverts and advice everywhere ..!!!

Bit of brother bashing now ....Little bro has not even gone to see dad or mum since our news but was driving near our house the other day and dropped my mum home ...he did not go in as he had things to do confused

Yes my brother has a walking disability as well as my dad but he can bloody visit them ok when he is skint !

He has dismissed mum and my concerns previously as dad just getting old (ahhhhhhhh)

I phone him and said he needed to see them (he is their golden boy wink )

He admitted to mum tonight that there was something "different " with dad ..

Have not gone into to much detail with mum as she is still shell shocked ..but....a bit of support earlier would have been nice instead of making me and mum out as a pair of nagging old bats !!!

Where's my brown paper bag ?????

WynkenBlynkenandNod Fri 24-May-13 07:24:46

You have my deepest sympathies Bizzey. My brother dismissed what We were saying for the best part of three years saying she was fine when he spoke to her. But that was on the phone, she tries hard with him, he hadn't seen her. Then it got to the stage whereveven he couldn't ignore it and the other health professionals had noticed so head had to come out of the sand .

But so far, still no sign of him, he's saying September now. First it was Feb, then April, then the summer. By staying away so long he's made it really hard to Come back, I know he's terrified of what he will find. He is the golden boy too must it must really hurt my Mum that he won't come.

2 weeks is very early days after the diagnosis. We're two months now and I do feel that I have come to terms with it a bit more for now. The fact that it will probably be a long haul is sinking in and I've had a couple of moments wher I thought I was totally losing the plot so I'vevrealised self preservation is vital or else it becomes all consuming. I love gardening and am fortunate to have one so try each day to do a bit.

I also try to have daily moments of what I think of active appreciation where I take a moment to reflect on the fact I am getting enjoyment out of something, whether it be a song on the radio, a bird in the gardens a cuppa in peace, something the DC's say. That's slipped a bit recently so I'm going to do that again. Sounds cheesy but it meant I'd go to bed knowing that I'd enjoyed something that day, even if for just a minute.

PostBellumBugsy Fri 24-May-13 10:42:15

Taking small moments is really important - you have to keep reminding yourselves that there are pleasures to be had, even if it is just a cup of tea in the garden.

Work is what keeps me sane. In a way I'm so thankful that I have to work full-time to keep a roof above mine & the DCs heads, because it gives me an excuse not to be at my parents every day. That sounds so awful, but it is true.

I dread the long & exhausting day I spend at my parents every weekend, so I really take my hat off to all of you helping out more regularly.

whataboutbob Fri 24-May-13 13:39:58

Hi everyone- I like the thoughts about the importance of taking time out. WBN I totally agree that removing yourself physically AND mentally at regular intervals is so important. I also find gardening really therapeutic. I have an allotment and I reflected to my counsellor that my allotment gets better every year and rewards me for my efforts. Whereas my Dad just gets worse every year. This sounds brutal and of course it's not Dad's fault, but still. I remember the feeling of horror I first had with my grandad, when I realised every thing I did would probably be negated a few weeks/ months down the line when his Parkinson's inevitably progressed. I know my efforts with Dad aren't wasted, on a spiritual level because the stuff I do is supportive and enhances his quality of life. But I can't win against the Alzheimers, whereas on my allotment I am in total control (except when blight strikes).

bizzey Fri 24-May-13 15:55:18

Something has been going around in my head for a while and I think I need to "say" it here as it is the only place I can.

Dad has lots of other medical issues as well...but none of them were going to be the cause of his death.

Even when mum got breast cancer 16 years ago we knew some people/some cancer's could be cured ...which her's was (TG)

I need to say this and sorry if I offend or upset anyone ...but I suppose mum and dad are feeling like a death sentence is hanging over them at the moment....we have been told some thing that there is no cure for ..

Mum got cancer and was told have a lumpectomy, nodes removed' a course of radio and we have a chance ....this is just ...take these tablet's and it might slow it down ..

Your thought's on my feeling's/thoughs ???

I am not a negative person and am not having morbid thought's bet my mum is though

sorry just needed to say it .I know it is all totally irrational....how does anyone know if they are going to have a heart attack in 5 years .....

Stopping now cos I am getting silly.....btw I am not crying or emotional or anything ...just feel wierd

WynkenBlynkenandNod Fri 24-May-13 18:37:28

My allotment's taken a bit of a bashing with Mum's diagnosis and the weather.

Bizzey you've just articulated what I think we're all struggling with. Bob says it in her post with 'I can't win against the Alzheimer's ' That's why I think however much you are expecting a diagnosis it is still a body blow as it suddenly hits you what it means. My Dad had cancer and successfully had it removed. But as you said with Mum, that is it.

One of my very good friends from school is down here as well. Went to see her shortly after the diagnosis and was explaining it to her. She said 'oh so basically she'll have a stroke or a heart attack'. My immediate reaction was 'yes if she's lucky' then the implications of that sunk in and I thought I don't want that it happen. But then au thought but I don't want her to deteriorate so she doesn't know anything. Then I realised that basically we're screwed whichever way you look at it.

The whole thing pervaded my every waking thought for a few weeks. But I think in the short time I've starting to have a degree of acceptance, possibly topped with a degree of denial as she's better than she was a few weeks ago after last TIA. I've said to DH I'd rather it was cancer. It is that moment when you realise that it is undeniably a terminal disease, it's a gutter. But then weirdly life goes on but with a new, different normality very slowly emerging, tinged with a bleakness that gets you out of no where.

It's still fairly early days for quite a few of us and there's no sodding manual. A lot of people caring for people with Dementia don't have children at home but we do and I guess it means we'll have to write our own rule book to get through it. Thank goodness for this thread where there is a place we can say these things.

bizzey Fri 24-May-13 18:51:06

OHHH sorry got to let it out as it is bugging me how our "ripened loved one's" are treated and if I was not there.....!!!

Took dad for a bladder and kidney ultra sound today....well did not take him he met me there in his scooter as it was easier then doing car /wheelchair and stuff with a full bladder...he has problems with walking and to be honest who can walk/move properly with a full bladder !!

We were asked to go into a cubical and nurse to take off all clothes ,put them in a bag and put gown on .

I said could he leave his pants on as I was helping him undress,

She said (not bovered like ) he can leave his trousers on (slight difference in ALL clothes to just top half ?)

Got into room...she said I could go now ...I said "no" I would help dad get on the bed ...and stay (depending on how "low" they would go for the bladder I would avert my eyes).

He got onto bed ....no you are wrong ..move down ..

He pushed up ...

No you are still wrong on the bed

FFS... I got dad's legs and pulled him to the corect position

What if I wasn't there ...he is in a mobility scooter ...ie movement not good

I know I am talking about dad's mobility here but his understanding was not taken into consideration .

Common sense ..if someone does not understand (regardless of anything) you change how you phrase it ??

OHHH dear I am in a funny mood tonight ...kids are at mums and enjoying my quiet time ...got to go up there soon and no internet..I will have to watch t,v !!! (and listen to my mum !!)

MrsFrederickWentworth Sat 25-May-13 00:40:31

Bizzey, it's shit, isn't it. Because actually if the rest of you is fine and can continue to eat and drink, you can just go on and on. But the you person isn't there. And there is nothing yet that can be done.

My ma has macular degeneration, epilepsy, cardiac problems, emphysema, but the worst is her failing mind. She is frightened of death and today her greatest friend died, very peacefully, but that is of limited comfort. And the knowledge of this friend's death may strike her anew several times. She rang 5 times to tell us.

Needmoresleep Sat 25-May-13 10:00:51

My mother's physical health is astonishing. The dementia specialist she saw two weeks ago confirmed that she is likely to live longer than her parents and they lived into their 90s. This in some ways may make it easier as I dont have to get round the dementia to ensure that my mother is receiving vital medical care.

However it leads inevitably to thoughts about the meaning of life. When does my mother cease to be my mother, etc. Also the fact that I am likely to spend more of my life responsible for my mother than I will have spent responsible for my children. Plus if dementia strikes me at the same stage as it struck both my mother and grandmother there will be very few years in which I can enjoy a care-free, in the literal sense, retirement. (Hence the atttachment to Wikipedia and Google.)

I think I am over the worst of this now, or at least the worst of it in the current phase of the dementia. My mother is happy and safe in a very sheltered environment. There is scope to ramp up the care as her disability becomes more pronounced. One day I will receive a phone call saying she is no longer safe in that setting. At that point she will move to a home. At that point she probably wont realise what is happening. And, very fortunately, she has the resources to pay, and I am able to manage those resources with this scenario in mind.

The emotional side is also getting easier. Partly because as she gets settled the mood swings become less severe, though Aricept seems to have sparked off another round. To a very large extent, and other than regular rows about access to a cheque book, she seems unaware of the fact I have taken over her finances, so the scope for conflict is reduced. Other than medical appointments, I am equally able to withdraw from her day to day routine. She is able to socialise, pursue activities, go to church etc, with support where she needs it. (Eg a cooked lunch, a carer to prompt for pills, a cleaner.)

The really difficult time was when she would be appalling to me one day and then all smiles the next. When I realised she was not quite sure who I am. The distrust which arose from use discussing something one day and then her forgetting it and accusing me of imposing things on her. I also hated the three years when I knew things were very awry, yet could not get her to agree to do anything. It was not only the low level background stress but the fact that we could not have a conversation without some form of dispute. Plus the real possibility each time she did not answer the phone, that she was lying on the floor unable to move.

At the moment there are more pleasant conversations than non. I am now back to being able to have a "How are you phone call" without having to delve into her personal affairs. There are relatively few areas of conflict, and on these as far as I am concerned I have medical and SS confirmation I am taking the right approach so there is no need for a discussion. In the moment, my mum is still my mum, and we can have a good conversation even if she wont remember it.

I dont know how I will feel when my mother loses both her conversation and the feisty spark that makes her who she is. The idea of a decade or more of 300 mile round trips to see someone who might be little more than a shell is not attractive. But neither is the idea that I might simply "warehouse" my mother in a home.

MrsFrederickWentworth Sat 25-May-13 18:05:34

Need, you have described much of our situation accurately.

My mother's underlying constitution must be like an ox.

I love her very dearly and our relationship in the past has been excellent, which is why this is so distressing now.

CMOTDibbler Sat 25-May-13 19:30:30

Need, I guess when the time comes for a home, you could move your mum to one close to you so 10 minute pop ins are possible since at that point she won't be interacting outside the home.

My mum is pretty frail - her spine is crumbling and compressing nerves (and it seems like the surgery didn't work this time), she is very arthritic, and she has type2 diabetes with associated issues. At least she won't be able to wander <weak grin>

As its dementia week, and dhs firm have the Alz Society as one of their charities of the year, they have a thing going on where people can write about their relatives with dementia. He said it was heartbreaking, and he could see in some of them how mum will be.

Needmoresleep Sat 25-May-13 23:03:43

I am very sorry to hear about the surgery not being a success. Especially given how difficult the stay in hospital was.

WynkenBlynkenandNod Sun 26-May-13 14:08:09

CMOT, I'm sorry the surgery hasn't worked. I guess I am lucky with Mum, she's relatively healthy if you ignore the fact she has TIA's. Needmoresleep has summed up a lot if how I feel too.

There was a sandwich moment yesterday. Day 1 of half term and DS woke up and threw up. Repeat a few hours later but after that session Mum's on the phone, had at ordered her Tena Lady, no I hadn't . Logged in and did so whilst cuddling DS then one handedly emailed brother to ask if he could tell her when he rang tomorrow I've ordered her Tena Lady.

No apparently he can't as she's his mother and he doesn't do conversations like that. Well I'd rather not but it was better to persuade her to do that then deal with the devastation using bits of tissue paper was causing before that. Then today I'm in the middle of the allotment minding my own business and he rings. I said I was just talking about him to friend, I've a book on whether he makes it back to UK this year. Weak laughter his end. Asked when I'd be back. I said a time. Was a bit late then was getting texts from DH to say he'd ben ringing. I ended up being half an hour late, just got back, text to say he'd gone out, work emergency . I have PMT and the realisation of how utterly ridiculous it is that he hasn't seen her is dawning on me. I know and have known it is ridiculous but just how ridiculous is sinking in.

bizzey Sun 26-May-13 14:56:25

CMOT... sorry surgery did not work this time ...but I did have wry smile on your comment about the wandering bit smile

Wynken..."he does not do conversations like that "...!!!

I had the same chat with golden boy brother...re....willies and balls ffs!

He said he would be too embarressed to talk to dad about "that sort of stuff"..so it was up to me to explain to dad where the catherter goes and how !!!

And that he has a hydrocyle due to fluid in his balls(scrotum) which is nothing to do with his wee wee!!!!

I think dad is going to have to be catherterised 1x week poss 2 .They have mentioned him doing it ...I said have you seen his hands.he cant even do up his buttons !! Rhumatoid Atheritis)

I will NOT do it !! Let the man have some dignity...so I will push for a DN to come in ....doubt if dad have ever used a condom in his life so to be fiddling with a catheter ...!!

Getting my head around things better today .

Waiting to be contacted from this friend/buddy thing the AS organise.
He does not want it obviously but I think he will enjoy the company when it starts

Mum now.....well that's a whole new thread grin !!!

WynkenBlynkenandNod Sun 26-May-13 15:04:53

Yes mine is the golden boy, never mind the fact she probably doesn't remember what he looks like. Why is being female seen as having to deal with these things, are we supposed to have some innate knowledge that errant brothers don't have ?

I think Bizzey you are very sensible to push for the DN, better all round. I have said I will not be doing anything physically with Mum. I think you have to be firm fom the start. A friend is having to sleep at her Grandmother's 2 nights this week when she's discharged from hospital. I think this is a big mistake, her Aunt's doing the next two nights but if she's not happy after that what happens then ? But she's recently lost her Mum and I guess there's a limit how much fight you have in you at some point.

topknob Sun 26-May-13 15:13:48

Hi just seen this whilst scrolling through. My mum isn't elderly (59) but she does appears to have Alzheimer's. We went to memory clinic a week ago and waiting for ct scan appt. as she wouldn't cope with an MRI. It is difficult some days but she lives down the road to me so I am always about.

WynkenBlynkenandNod Sun 26-May-13 15:26:23

Welcome Topknob brew Sorry you are here under these circumstances. My Mum had a CT scan back in February. She was really worried about it but it was very quick when she actually got in there. Next stage for us was back to the Memory Clinic for an apointment with a Consultant then onto Aricept which meant regular trips to the Memory Clinic so they can check it's not affecting things like heart rate.

Down here we also get someone fom the Memory Advisory service keeping in regular contact as well.

topknob Sun 26-May-13 15:44:02

The dr did say she would have to go back to the memory clinic for results and she may be suitable for medication which will keep her brain where it is now for longer. Not sure how the ct will go though !

Thank you for the welcome. It is nice to be able to discuss this with people who do know what I am going on about as my do listen however they do not know the process.

bizzey Sun 26-May-13 17:53:20

Welcome topknob to a very good thread that none of thought we would ever be on !!

I am still in the early stages with my dad ...we are due to go back to the consultant in 2 weeks ...he will have been on meds a month then so I presume they do the same memory tests to see ??improvement or just to check his heart rate ?? I don't know .

Our route went :

GP: mum and I to talk.. June 12
GP me and dad: July 12 got referal
Consultant.. Sept....questionaire and test ct recomended
CT done ...Oct 12
Got lost in the system for follow up appointment
Feb 13 ....still lost in the system !
May 13 go to appointment

Doctor says ....why has it been so long since I saw you !!!!!!!!!!!!!!!!

Showed us the CT scan pictures...said the word Alzheimer's and gave us a prescription and introduced us to the Dementia support nurse/adviser.
If I had not been phoning and checking we still would not have had that appointment .

Funny thing is .....he had already talked about these meds before any results /investigations had been done ??

I am hoping that it is because he is a clever expierienced knowlegable doctor
and knows the signs ...or are the meds cop out to keep me quiet !!

Not sure even I understand the point of what i just posted ! grin

WynkenBlynkenandNod Sun 26-May-13 18:09:36

The first visit whilst on Meds was pretty quick. We saw one of the nurses and it was just basically how are you feeling, have you noticed any difference, had I noticed a difference and check heart rate. No questionnaire, she said that would be at the end of the 3 months but Mum came off Aricept after a couple of months and we're back to the beginning with Galatamine.

bizzey Sun 26-May-13 20:16:28

wynken...interesting ....Our 1st appointment is actually clashing with something the kids are doing at school.

I phoned and begged asked if we could be slotted in a bit earlier ...thinking it was a 10 min appointment ...but we can't as it a 45 min appointment .

I am going to miss the summer fair sad

WynkenBlynkenandNod Sun 26-May-13 20:31:07

Oh no Bizzey. I hate I when things clash with the DC sad I guess different places have different protocols.

CMOTDibbler Sun 26-May-13 20:46:30

Hi Topknot. Sorry that you are in a position to join us, but its great to be able to chat to others that know the score - my friends are sympathetic, but really don't want to talk about it.

My poor dad. Mum has spent the day thinking he is her father sad. He just doesn't have the energy for all this. Was just talking to him about care homes and that I'd like him to move up here when it comes to it

Needmoresleep Sun 26-May-13 21:59:36

Hi topknob. Your mother would be young to develop Alzheimers but it happens.
The good news is that there is now a drug Aricept which can slow the memory deterioration, at least for a while. Not all are eligible or can tolerate, but it apparently really works for some.
The memory people were also pretty sure pre-scan that my mother would have Alzheimers. There are other types of dementia like vascular, which seems linked with high blood pressure and mini strokes. Or even a tumour. So my mum had a scan anyway to confirm. The doctor was right. The important thing, if she is eligible, is to get your mum trying Aricept quickly to preserve as much memory as possible.
Where my mother is they do the scan then there is an appointment with a specialist who prescribes, starting with a low dose. Then a check up after 4 weeks when the doseage may be increased (we have this on Tuesday) and then more follow up for six months, assuming things go smoothly, and then discharge to the GP.
Worth ensuring someone is with her for diagnosis. Not least as it is a chance to ask about likely progression. For some people it can be quite fast.
Once you have a formal diagnosis you should talk to your mum about Power of Attorney. If in the first instance it is your dad she should consider an alternate of a younger generation. POA (both care and financial are only used when she loses capacity to do things herself but need to be set up whilst she has capacity. )
Even if she is relatively well it is worth contacting social services and asking for an assessment. This provides a means to tap into support, eg if she needs adaptations or someone to come in each day to give medication. It also provides a flag if she were admitted to hospital.
Thats the practical bit. I cant offer much advice on the emotional side. It is a horrid disease, not just for your mum but everyone around her. I am really sorry to hear your news.

topknob Mon 27-May-13 09:23:06

Thank you smile my parents are divorced so it all comes down to me. I always take her to any appointments and if allowed go in with her. POA is something I have been thinking about. Her bank suggested I became a third party on her bank account as they were concerned about her, so I have done this. So far all other agencies etc have been happy to talk to me once I explain, which is good.
Thank you again for the welcome. Sorry for all of you as well but so good to have some advice.

WynkenBlynkenandNod Mon 27-May-13 10:37:02

Topknob my parents are divorced too. That's good that you're being a third party on the account but I would organise POA when you have a diagnosis. The Memory Clinic talked to us about it. Mum had difficulties understanding the difference between an Executor in her will and the power of attorney but got there in the end. It is best to have it as potentially there could be cases where you really need it and if you don't you would have to apply to the Court of Protection for Guardianship which is a whole other can of worms apparently.

The Alzheimers Society referred us to a charity who helped us apply for the POA for much less than using a solicitor. We only did the Financial one as it seemed the most important at the time but now Mum's more lucid and the pressure is off a bit I'm thinking about broaching the subject of the Health and Welfare one as well.

Another financial thing is Attendance Allowance, your Mum might be eligible for that if she doesn't already have that. Plus if there is a formal diagnosis, if she gets AA then a lot of councils will exempt her from paying council tax.

PostBellumBugsy Tue 28-May-13 13:58:28

Afternoon all & welcome topknob (although we all know you'd rather be anywhere but here.)

Needs, I wondered about the whole when is your parent not your parent anymore thing. Bought the last issue of New Scientist which had a couple of articles about what is "consciousness" and it was interesting. I don't think there is much of my "Dad" left. Very occasionally you catch a glimpse in a word or look but I sometimes think that is wishful thinking on my behalf.

For all of you with a parent with Alzheimers, check out this link from Dr Briffa about B vits slowing down or even staving off Alzheimers: www.drbriffa.com/2013/05/23/b-vitamin-therapy-looks-promising-for-staving-off-alzheimers-diseaselow-carb-diets-can-help-maintain-the-metabolism-after-weight-loss/. Seems well researched & not quackery. Could be worth a try.

Dad has been under the care of the stroke team more recently, but this has diminished in the last few weeks to bugger all basically & I wondered what help if any we could expect from the dementia / azheimers side of things? Any thoughts?

My dad died from Alzheimer's Dementia last November
I didn't think you actually died from the Alzheimer's I thought it was usually another illness but that the Alzheimer's prevented the person fighting it effectively. But it was actually Alzheimers on his death certificate
The last coupe of years were awful and last summer dad began to lose his balance and then broke his hip and once he lost his mobility he went downhill fast.
He didn't recognise anyone for the last 18 months at least, but would say hello sometimes. His sister visited him several times on the last few months, which was hard for her as she lives a long way away, she was very upset to see him as he was.
My dad was never an easy person. Very judgmental and critical, the illness made him worse and he was very vocal. Sadly I believe I was always a disappointment to him because I wasn't a boy, but I would like to think I made him proud at the end for fighting to achieve his last wish.
I am so sorry for all of you going through this, it is a horrible illness. I thought I'd be relieved at the end but I really miss him, as he was before it took over.

PostBellumBugsy Tue 28-May-13 14:22:56

You'veCat - so sorry to hear about your Dad. What was his last wish that you helped achieve?

Thank you PostBellum
He wanted to donate his body to medical science as he was a scientist. He had always told us this from when we were quite young!
However his body couldn't be accepted once he developed Alzheimers sad but by then he didn't understand. So I arranged for Brain donation instead. Then he died on a Saturday and there was no doctor to sign the death certificate as it had to be one who'd seen him in the last 2 weeks and it looked like by the time the doctor came back from holiday it would be too late for donation.
After a lot of tears and heartache we managed to get it signed the next day and the fabulous funeral directors managed to get him to the hospital for the donation within minutes of the deadline for when he would no longer have been viable.
It was a bit of a nightmare really but it meant more to me than anything else that some part of him was donated, as I know that's what he had always wanted.

PostBellumBugsy Tue 28-May-13 14:44:38

I think he would have been very proud YouveCat. smile

welwyn13 Tue 28-May-13 19:24:53

Hi can I join you, my mum was diagnosed with Lewy body dementia last year, she is 80 and living at home with my 90 year old dad. It's a cruel disease made worse as my mum also lost her sight a few years ago. She is agitated and often very frightened- awful to see. She has a lot of hallucinations which are often scary. My dad can longer cope and we have contacted ss to do an assessment- dread the red tape and battles we will have to get event care and ensure my dad gets to stay in their home. I can't believe after 50 years thy will be split up, and my mum would hate the thought of being away from her own home. Guilt ridden

bizzey Tue 28-May-13 20:02:40

Oh welwyn sad I am new here and do not have any advice....but I am choked for you ....stay with us here and we will hold your hand sad x

MrsFrederickWentworth Tue 28-May-13 22:42:33

Oh welwyn, my ma has macular degeneration, awful short-term memory, hallucinations, and is terrified.

It's awful.

welwyn13 Tue 28-May-13 23:06:42

Thx wentworth, yes mum has macular degeneration as well, so cruel to have both this and the Lewy bodies dementia . I find it s o hard to reason and try to make life better for her. All the sight advice rays on a sound mind, and the dementia advice often relies on visual stimulants. Very hard to know what to do for the best

PostBellumBugsy Wed 29-May-13 09:01:10

oh welwyn, so sorry to hear about your Mum. Huge hugs. Don't have any advice really - only to come here when you need to download or get some virtual hand holding.

WynkenBlynkenandNod Wed 29-May-13 09:10:45

Youvecat, that was a really good thing to have done. I bet he would be really proud. I miss the way Mum used to be. She's had a really good few days and i know on some level my mind slips back to thinking there's nothing wrong even though rationally I know she's been ill for years.

Welwyn that must be very tough and MrsF too. Wesleyan could you seek to the Alzheimer's society before the assessment so you know exactly what SS can offer in your parents situation? I don't think there will be an issue about your Dad stagy in his home but it is good to be armed with precise facts before. I always sit there with a notebook so I can take notes and read back later when I've had time to think about it.

I managed to log onto my Mum's account last night which is progress. I think the bank have sent my card to her address but it does sound like she is willing to hand it over which is good. How many of you have the Health and Welfare POA ? We only did the financial one but now I think we should discuss the other.

CMOTDibbler Wed 29-May-13 10:49:19

Another rubbish day. Mum had one of her non responsive turns again today (have been going on for a couple of years), and dad just phoned to tell me, and confessed that he'd sat there and wondered if it would be best just to leave her be and see if she slipped away sad. But he did phone the gp who told him to phone 999, who did come and spent an hour there, but felt she could stay at home as was more rousable with time. GP is reducing her morphine patches. But I'm not sure really - this has happened over and over again.
dad is at the end of his tether tbh.

More cheerily I did something naughty yesterday. My brother hadn't phoned them for over 3 weeks - I speak to dad daily. So I posted on FB about mum forgetting dad and how crap it was. And amazingly, though he didn't comment or anything, he did phone dad last night.

Welcome Welwyn, sorry you find yourself here.

Youvecat, I'm sure your dad would have been very proud of your tenacity in making the spirit of his wishes happen.

WynkenBlynkenandNod Wed 29-May-13 13:16:57

I'm so sorry CMOT sad. That must be incredibly tough to hear your Dad say that but so much better for him that he can actually say that to you. They aren't mini strokes are they? As for your brother I'd have no qualms about posting that on FB.

CMOTDibbler Wed 29-May-13 13:54:25

The awful, awful, truth is that I agree with him. I really don't think they can cope together much longer.

I've wondered if they are TIAs, but she isn't affected in any other way during these episodes, and a CT scan done during one didn't show anything apart from severe atrophy of her temporal lobes. When she has been admitted during one they just decide on a reason (opiate overload, gastroenteritis, don't know..) for that time, and nothing more happens. But I think she takes a permanent downturn in her dementia after each one, so maybe its another chunk of brain dying off.

bizzey Wed 29-May-13 14:07:56

CMOT...sad...but at least your dad can talk to you like wyken said.

Dad has got/was due an appointment at the hospital tomorrow for something else that needs checking/is wrong with him but I decieded neither dad or I was up to it (CMOT I know I said I would do it (on other thread) ..but just cant!)

We were dure to go 3 weeks ago but my car decieded to blow out white smoke so I had to cancel it 1 hour before the appointment . Man on phone gave me tom .

Phoned to cancel ...we are not in the system as 1st man did not log it properly and we went dowm as a DNA ref back to GP !!!

I explained it was not a GP referal in the 1st place but a follow up from the hospital after he had been taken in via 999.

Got it sorted ..they change the DNA and we go the morning of the day we have our 1st follow up appointment in the Neurology clinic....think picnic and a flask is going to be in order !!! grin

Mum is getting excited when he has a good day ...."oh he is better now !"

Cruel I know but I can't explain too much to her yet...I want to wait for our other appointment when I can ask some questions and get things clearer in MY head first .

As an aside ...are there any questions you asked that were good or any questions you wished you had asked ??

flowers to you all

PostBellumBugsy Wed 29-May-13 14:09:50

Oh CMOT that sounds so tough for you and your Dad. What are the morphine patches for?

CMOTDibbler Wed 29-May-13 15:23:05

The morphine is for her pain caused by her spine collapsing and compressing the nerves.

Have a nice day out Bizzey wink. At least it just makes one day of schlepping to hospital. Mum gets terribly constipated, but is very resistant to taking the medicine to sort it as she then has accidents.

PostBellumBugsy Wed 29-May-13 15:32:49

Bloody hell CMOT that sounds bad - your poor Mum.

Needmoresleep Thu 30-May-13 10:30:02

Hi Welwyn and YouveCat. I feel both saddened by your stories and privileged to hear them.

My mother has now had her second Aricept appointment. No big deal. pulse read and dose increased. My own take is that her memory has not improved but her ability to work with what she has, has improved. Probably not drug related, but now things have settled down and she is getting used to the fact she is having to have support, she seems more willing to acknowledge and accept the memory loss. If the drugs do delay further deterioration it will be a real blessing. Things are sustainable as they are, and with a routine established, my mother is slowly regaining some independence.

(And though our relationship has been difficult I cant help admire her courage, as she manages to walk some distance to her church and to take the bus to the nearest shopping centre.)

This has enabled me to catch up with some maternal duties. Despite being given a league table of Universities and links to book open days, my son had only managed to get along to the one which is within walking distance of our house. Not what DH considers "leaving home". So DS and I had a bit of a half term road trip starting from my mum's and taking a wide loop to visit three campuses in quick succession. All very different and I would not know where to start to choose. Luckily not my decision.

topknob Thu 30-May-13 11:45:12

Some of you have it really bad at the moment sad have some thanks from me. Had to fill in mothers ESA form again yesterday after dwp lost the first one I sent in with all her original documents . But it has been sent again so hopefully we won't have to wait too long.

WynkenBlynkenandNod Fri 31-May-13 07:48:38

How are you and parents doing ? I'm so sorry for what some of you are going through. It's only as I got older that I've realised that there aren't really words some of the time so I shall do as Topknob did flowers but seeing as it's Friday here's some wine.

Went to Mum's yesterday and picked up the bank card and pin number that she handed over without a fight. She is currently on far more of an even keel but has been thinking about the future. She thinks in the not too distant future she'd like to move to sheltered housing as she would like to feel more part of a community.

That's fine but I'm worried. I guess really she should go to extra care housing but I can't find any to rent so she would have to buy. Which is fine but with the Vascular element she can be very up and down and I know that potentially she could deteriorate fast. I then worry about not being able to sell her flat plus having care fees. My brother and I have a plan for the care fees but it does involve selling her house which would sell easily.

Or she goes to normal sheltered with us raising money from her house so she could move in straight away givi g us time to sort her house then when it's time for a home her current house and sheltered housing flat could be let. That's fine and where I was until I read online about some people having problems when the flat manager knew people have dementia with one even saying it was against the conditions of the lease. And I do worry that she could have two moves in quick succession, the stress of moving is quite likely to trigger a TIA.

Then I though what we need is somewhere which does Assisted living flats and has an onsite specialist Dementia home with assistance with fees if all goes pear shaped. Well I managed to find one, down the road from where we sodding moved 10 years ago. It's a charitable trust which I've been familiar with all my life as they had a home up the road from where I grew up. Dad has already said if he ever needs to go anywhere he'd like to go to the flats they have near him. He's not that far from the one I think would be good for Mum and I have to consider at some point he'll struggle to get down so I will need to make more trips up anyway. I could stay with himor have friends there who would put me up and would be lovely to see more regularly. Am I nuts for even considering going to look? Sorry, that's long.

Lavendersbluedillydilly1969 Fri 31-May-13 09:25:11

Hi I found this thread and am in need of some advice if possible.
My DM had a stroke a year ago but is living 'independently' with daily support from a close friend. The friend is relocating to be closer to family so will longer be able to help DM so it looks like I need to move her close to me as she is currently a couple of hours away and with young DC I can't get there much.
DM has huge communication problems following the stroke and can't write or use a keyboard as although she understands and can read etc its a one way thing.
As far as I know she gets full DLA and is in a private rented property paid for by housing benefit.
Unfortunately we are not close and I know very little about her financial circumstances. Her friend currently deals with all this for her and pays bills etc weekly. She has been in trouble financially several times and has debt agreements in place.
She has speech therapy but apart from that I don't think SS or anyone I involved. When she was released from hospital last year she had carers provided for 2 wks, proved she could microwave a jacket potato and was deemed able to cope.
She has multiple health issues in addition to the stroke and seems to tick several boxes for vascular dementia although she hasn't been diagnosed. She has also been depressed for ever and I'm not sure suggesting to her that she might have this would be a good thing.
To apply for sheltered accommodation locally I need to fill in a big form but don't have most of the information needed.
I just don't know where to start or where to go for help and advice. It seems minor when I read other posts and you are all dealing with some awful stuff.
My mum is a bit like a big toddler who can't talk, she's very different to how she was pre stroke and I know she needs to be kept an eye on and help with cleaning, shopping etc in fact she never goes out on her own as she would prob get lost or run over so I will be really involved in her daily life.
Please if anyone can give me a clue where to start it would be so appreciated. Trying to help someone who can't tell me anything is not easy and I just don't know where to turn.

PostBellumBugsy Fri 31-May-13 09:41:30

Wynken - no don't think you are nuts to go and have a look. I have reservations about "sheltered housing". I think some of them are good, but some of them the sheltered aspect is very tokenistic. I think somewhere that has a dementia element to it sounds like a much better long term plan.

Lavendersblue - sorry to see you here too. Could you have a look at something like Wynken is thinking with the dementia element? It sounds like your Mum may need more than just sheletered accommodation. Do you know if Social Services did an assessment after she came out of hospital last year? I'm no expert, but I think SS should have done or an assessment to work out a package of care.

CMOTDibbler Fri 31-May-13 11:38:42

Wynken, I'd def go and have a look and chat to them.

Lavender, I think your first port of call is your mums GP to get them to organise a referral for a needs assessment, and maybe talk to a carers centre local to you to find out what is available locally - they should be able to help you with all the forms.
Would your mum be able to tap an IPad? There are communication apps designed for people with very limited dexterity

My dad is phoning a carers centre local to them to ask for an outreach worker to come out and chat with him for support. A result! DN and GP coming out to see mum as shes vomiting today and not looking well.

Lavendersbluedillydilly1969 Fri 31-May-13 12:08:28

Thank you CMOT and Post for you replies. The trouble with mums communication is a mental one rather than a physical one as she does have limited use of her hands. It seems that although she can read and (we think) understand information, her mind cannot process outgoing information so in her mind she's saying or typing what she intends but it's gobbledygook. Does make things tricky and she finds it do frustrating. She was a very intelligent well read woman and most of her social life was Internet based and if course she has completely lost it all, no friends and no way of making them.
I agree that the social services input was inadequate. It literally was that she can wash herself and cook z ready meal in the microwave and that's all she needs.
The biggest problem really is that she doesn't seem to be aware of her limitations. She can't communicate with strangers etc or use a phone, is probe to just crossing roads regardless of traffic and just kind of helpless. In my youth she would have been called 'simple', it's very hard be ause it's not my mum. Much as we didn't get on at all I would give anything to have the old boot back instead of this frightened creature.
I will try and talk to her GP and see what he can do and see if there are any support services locally. She can't stay where she is it just won't work so I need to move her somehow. Where we are there are very few ground floor flats available to rent privately let alone available to people on benefits.

PostBellumBugsy Fri 31-May-13 12:46:03

Lavender - sounds like the stroke took out the expressive function of your Mum's brain. Same as my Dad. Dad was running his own business 18 months ago & now he is a giant toddler. You can't even ask him if he'd like tea or coffee - you have to ask him a question to which the answer is only yes or no. To be honest Dad couldn't even microwave a meal for himself because his short term memory is shot as well. He'll get up to start going somewhere and just in the time it take to get up, he has forgotten where it was he wanted to go. Heartbreaking.

We have stopped thinking that inside the intelligent "Dad" that we knew is somewhere trying to get out, but have accepted that his function & ability is permanently impaired. It has stopped all of us trying to "over-stimulate" him with our efforts to get him back. We still do as much as we can with him, but try to be mindful of what this new person will be able for and find some pleasure in.

My Dad is 77 though, so if your Mum is younger it is possible she may come back to herself more.

Lavendersbluedillydilly1969 Fri 31-May-13 13:43:53

My mum is only 63 and up until a year ago would happily have laid claim to every illness and infirmity going which is partly why it's so strange now. She's actually more mobile because she's forgotten so many problems she's claimed to have in the past but now she genuinely is disabled it's kind of pitiful. I'm actually fonder of her now because she's a different person but the responsibility is scarey long term, women in my family live to their nineties and I don't want to spend my middle age looking after her, that makes me a bad person I think but it's how I feel.

topknob Fri 31-May-13 14:08:01

I do understand how you feel. I feel like I am the parent now to my own mother. It is frustrating some days. At times it gets abit much, and I have a wobble. I have dh, 5 kids aged 15-8, one has asd and I am having to sort out his secondary school and various appointments. Plus run my own small business and deal with all my mums stuff and appointments.
Don't feel bad xxx

Lavendersbluedillydilly1969 Fri 31-May-13 20:20:19

Thank you topknob, I think it's just knowing that we are really at the beginning of a probably lengthy journey and its not going to get better just harder. Glad I found this thread tho, some amazingly strong people on here.

WynkenBlynkenandNod Sat 01-Jun-13 08:14:10

I don't think it makes you a bad person Lavendersblue, just a totally normal one. You've summed it up very well about the beginning and it getting harder - who wouldn't feel scared faced with that and want to run screaming faced with this ? I had days after diagnosis where I'd think I can't deal with it but there isn't actually a choice is there ? Therefore worry, fear, resentment all seem like perfectly rational responses really if you think about it.

DS was off for the day with a friend so decided on the spur of the moment to take DD to Bristol. Part of me had in the back of my mind that I could see how hard I'd find the trip. Glad I did it, traffic meant it took over 3 hours on the way up which certainly focused my thinking and my googling. I have now found something closer to home, about 40 mins easy driving. Close care flats with nursing home which copes with Dementia on site. Definitely will look at that one.

MrsFrederickWentworth Sat 01-Jun-13 10:12:50

CMOT, your mother's blackouts sound like my DM's. Impossible to rouse, then she says her mind goes to mush and certainly there is a sharp further deterioration. But so far they have not happened when.she has been on s heart monitor and we are given diff reasons everytime and there is no evidence of. TIA even though that is,what it looks like.

Bizarre.

Needmoresleep Sat 01-Jun-13 14:09:52

WBN, one of your issues is that you are facing not only dementia but other health issues. Managing the first is hard enough but managing the others around the first is harder.

In terms of dementia the solution presumably is to identify the extent of the disability and work out what support is needed. The first issue then is to have the person accept the problem and agree to support. This is really difficult but it appears you are some way there. Then it could become some form of options analysis, which should include the money, your time and support from social services which might be available.

I provided something like this for DB, though he failed to respond, which included a care home (too early), carer support in her own home (would she like someone in her own home and how sustainable would it be into the longer term), and different forms of supported housing (here 24 hour warden support was essential, however without being sure that she would settle/manage buying a flat was a financial risk).

I would be tempted to tell her you were looking at options and in order to do so you need to be absolutely sure of her finance....could she hand over the paperwork.

Then ask everyone you know who goes to a lot of places. Professionals such as SS and the memory service wont be able to make recommendations but could suggest places you might visit. Try the GP, the vicar/priest, others such as the physio if she has one. A British Gas engineer was able to tell me that he regularly visited the place my mother now lives in, and that it was lovely and the staff very kind.

In terms of distance I don't have a problem with 150 miles each way if it allows my mother to retain her social networks. However my mother's general health is really good and we were never that close, so she will not expect to see me that often. I can time my visits to avoid traffic, and often combine it with something else. Not least I have joined the National Trust and am planning to visit everywhere on route sometime in the next year.

However if my support were needed for other health issues, including visits to doctors and hospitals and also making sure my mother was in for routine visits from community professionals, as well as predictable emergencies, I would want her to be closer. Also because my mother's health is so good, her prognosis is long; when it was all at its worst I felt she would outlive me. (I understand completely what Lavender is saying.) Your mother has a much shorter prognosis. DC are also teenagers and so can be left.

It is great your mother is talking about a move. You should encourage her to move "early". The more skills she still has in place the better she will be able to settle, adapt and make new friends, and so the better the quality of life going forward.

Best wishes to all....

skyblue11 Sat 01-Jun-13 21:14:42

Glad I found this thread.....my Dad died of dementia with Lewy Bodies in 2010, Mum is about to have a mini memory test and appears to be hallucinating (like dad did) so it's brought it all back, I am so afraid of the future and the long haul we all now face.

topknob Sat 01-Jun-13 21:51:28

Skyblue.. xx

WynkenBlynkenandNod Sun 02-Jun-13 20:39:08

Really sorry Skyblue. On your other thread you mention antibiotics - she's assembly got an infection. The psychiatrist who saw Mum was talking about the affects of delirium after infection which he said could last for some months after the infection had gone. Am wondering if that may account for some of your Mum's current problems.

Thanks Needmoresleep , lots to think about. My brother when he heard today that she was talking about sheltered housing said to stall her and see what she's saying in 3 months time. As he rightly pointed out she keeps changing her mind. We both feel two moves would be too much. I think the stress is likely to kick off more TIA's.

After a very good couple of weeks I rang her this evening to tell her she's now a Great Great Aunt. Very surreal conversation that was I can tell you. It finished with her saying 'but my tennis match has finished now' after demanding to know what DH thought of all these babies and who was it who'd had the baby again? I gave up at that point and decided my hormonal 14 year old was a safer bet conversation wise, even if she was being all passive aggressive about the ice cream and disgusted her orthodontist appointment clashes with drama and a science test. Clearly I am supposed to be psychic and know these things.

I refuse to stress though. The sun is shining and I spent hours at the allotment being normal, plus I'm going back to work next week (2 days a week, well that's the plan but as we all know things change in Dementia Land and a week is a long time).

topknob Sun 02-Jun-13 20:47:39

My mum lives in kind of sheltered housing already, I moved her in a year ago. It isn't warden controlled as such but she has pull cords everywhere and an intercom to contact someone if she ever needs to. It is for over 55's and whilst she is a 2 minute drive away, it does offer some reassurance.

Had mum over for dinner today, thought it was going well until I went to drive her home and she couldn't work out how to open the car door (from the outside) or put on her seatbelt. These are simple tasks !

Wynken, good luck with going back to work xx

WynkenBlynkenandNod Sun 02-Jun-13 20:52:59

Thanks Topknob. Last time I tried I managed one day before last crisis. I guess that's the unpredictable nature of the Vascular element.

My Mum's not great with the seatbelt and admitted the other day she can't order things online anymore (thank flaming goodness for that ). That's nice your Mum came. Mine won't come if the tennis, F1, football, skiing, cricket, olympics and more I've forgotten is on. Which doesn't leave much time.

Needmoresleep Sun 02-Jun-13 21:08:30

She should join mine. Whatever the problems, she was not able to forget yesterday was Derby day, and was set up for a day in front of the TV.

Much simpler obviously than remembering birthdays or even grandchildren's names.

I get the feeling we are all sun-downing on a Sunday night. Lets hope next week is a good one.

CMOTDibbler Sun 02-Jun-13 21:30:42

Think its time for a wine all round.

Mum much worse after her turn on Friday and has been wandering the house at night, drinking undiluted squash, and being generally horrid.
Wah. Looking at care homes near them with a view for respite.

In good news though, the carers centre were fabulous on the phone to dad, have got him to get Attendance allowance forms and will come to the house and fill them out and chat then about services and support. I luv them

topknob Sun 02-Jun-13 21:46:49

oh yes remembering grandkids names, she failed that at the memory clinic. I did try so hard not to get annoyed with her about the seat belt, but it is a regular thing with her, I pick her up two/three/four times a week and she can't do it...sometimes I give in and do it for her, other times I will wait until she works it out..is that mean? Funny thing is she is able to phone me every sunday every 10 mins until I answer about coming over for dinner? some days I have up to 10 missed calls sad

CMOT sad good news about carers centre though xx

PostBellumBugsy Mon 03-Jun-13 10:16:51

Morning all, sorry to hear your Mum is in a bad way CMOT.

Another gruelling visit to parents this Saturday. Took Dad for a walk - he is getting on a bit better with the sticks. Tried to converse, but sometimes he can't even remember what you were talking about if the sentence is too long - so sad.

My brother was ill, so DCs and I did vast amounts of mowing. It was comical really, as DS is the only one who can start the mowers (2 really huge petrol jobs with scary pully things to start them up), so he and I did an hour or so and then he got really tired, so DD (who is a tiny weeny sparrow of a child) said she'd help, but DS still had to keep starting them every time we had to switch off to empty them. It was seriously hard graft.

Did my weekly weed through the mountain of post and chucked 80% of it away. Am hoping that at some point the catalogue people will realise that nothing is ever ordered & will stop sending stuff through. Haven't got the energy to start emailing or phoning them to get my parents names taken off the mailing list. Tried to deal with the other 20% but Mum gets so stressed about it, that I couldn't manage all of it given how much time spent doing bloody mowing.

Then we had the horror of dinner. Mum has got slightly obsessed with feeding Dad & spends too much time cooking things she thinks he will enjoy. Needless to say that the things she thinks he will enjoy are fairly repellent to the rest of us. Stew with vegetables cooked to mush. So, we sat down to watery pork stew, with boiled potatoes, cauliflower, swede & broad beans all horribly over cooked and lacking in butter or any kind of seasoning to make them palatable. The DCs were looking at me with accusing eyes of horror. To top it all off, Dad was really tired & kept saying "Disgusting" and humphing, coughing it back out & dropping bits. So Mum had lovingly prepared a dinner that all of us hated - except the DCs & I pretended it was lovely!!!!!!!!!!!!!!!!!!!

I hate the bloody ridiculous farm house they live in & I really, really hate mowing. I hate these exhausting weekend visits & I hate that I have to make the DCs come with me.

GRRRRRRRRRRRRRRRRRRRRRRRRRRRR. Sorry, had to get that out of my system.

CMOTDibbler Mon 03-Jun-13 10:42:30

PostBellum, sounds like you need a cuppa and a big slice of sticky cake. Is there not a possibility of employing someone to do the mowing?

PostBellumBugsy Mon 03-Jun-13 11:00:22

Thank you CMOT. I have a huge mug of cup of tea at my desk now! grin

Going to speak to brother about trying to get someone in to do more mowing - as he can speak to Mum about it, she won't have it from me.

My brother has spent the last 3 weekends solidly mowing or doing DIY around the farm - I think that is probably why he is ill, because he is knackered. Mum has a man come in who does 3 hours a week, but I think during the summer she needs to increase that - or sell the place. I so wish she would!!!!!!!

WynkenBlynkenandNod Mon 03-Jun-13 12:55:41

I'm sorry CMOT. Mum gets worse after she has a turn too, but after a couple of weeks she seems to improve.

PostBellum, that sound reall hard work, the kind of situation where you go back to work for a rest. Maybe you should refuse to do the mowing to force your Mum's hand a bit ? If you keep doing it there's no incentive for her to sort something. That was my epiphany at Easter.

My week has started. With the care agency on the phone. Mum is refusing to let them use flannels on her legs, won't shower whilst they are there as per increased care package, keeps losing her paper with the visit times nd two Carers complained about her being rude last week. How I love Mondays .

PostBellumBugsy Mon 03-Jun-13 14:03:19

Wynken, I do wonder sometimes about the care agencies complaining about rudeness or uncooperativeness. At the end of the day, they are looking after people with dementia - they are not going to be pleasant and cooperative. Are the carers who help your Mum trained to deal with elderly people with dementia / Alzheimers?

Dad will not have male carers. If they come, he takes himself to bed & hides under the covers and shouts "Love" to my Mum over & over again. Having watched him cough his food out deliberately on Saturday evening, he can be really unpleasantly uncooperative too - but that is part of the condition. The man he was 12 months ago, even 6 months ago would have been horrified by that kind of behaviour.

The brutal reality is we need to stop "enabling" Mum & Dad to live in their crumbly old farm, but that is so hard. It was their dream home 35 years ago and they loved it and in my Mum's case still love it. To me it is like a bloody great millstone - but it is their dream. Dad is unlikely to live for more than 2 years because of the cancer, let alone the repeated bleeds in his brain - so the whole thing has a finite point. That's why I feel like a bitch for hating it so much - but at least I can come on here & rant a bit.

WynkenBlynkenandNod Mon 03-Jun-13 15:28:36

I think the rudeness was less of an issue but mentioned if you see what I mean. She did say all carers are dementia trained and said she pointed this out to the Carers. A stack of flannels ordered plus a whiteboard for the Carer to write down time of next day's visit on. Also firm talking to Mum that Carers will vary a little in the time they arrive as depends on traffic, what happened with previous client. That it's no good talking about changing care agencies, she'll hate the next lot too and it's not the Carers fault her legs flared, she stopped her Meds , yes it was 3 weeks ago but they take a long time to go down. And breathe...

Enabling is the word that jumped into my mine at Easter PostBellum. I can see what a difficult situation it is for you though. Can your parents afford to get the help? If so maybe that's the thing to focus on. Keep ranting, we all need to be able to.

WynkenBlynkenandNod Mon 03-Jun-13 17:02:21

Ooooooo, Amazon Prime membership just taken out . Things to arrive at her front door quickly, at the click of a button. That was my first major decision as Attorney and £50 seemed so extravagant I scuttled off to check with my brother!

CMOTDibbler Mon 03-Jun-13 17:17:31

Amazon Prime is fabulous - you wouldn't believe the things I get for my parents on it. Urine bottles, crutches, all sorts!

WynkenBlynkenandNod Mon 03-Jun-13 17:27:58

Excellent, that has made my day smile

I guessed are lucky that technology has moved on and it does make things a bit easier. I could order Mum's leg cream at a click of a button and the pharmacy will deliver.

One brilliant thing I read was someone using a mobile where you can record your own ring tone. They recorded a message to say Mum you haven't replaced the receiver on your phone, please put it down. The Mobile stayed plugged in then all that was necessary was to ring the number if the main phone was left off the hook. Scope for other uses I think.

bizzey Mon 03-Jun-13 17:28:41

Hi all ..back on after a busy weekend. It was ds's birthday on Friday and I took him and 7 friend's bowling ....to make up for the one I forgot to take him to ....and gave them lots of change to play on the other arcade game's.....slight guilt OTT but he had fun grin

Took dad for sight and hearing test today....he has a cateract inone eye and cannot see a thing out of it ....I never knew !!! He told the lady he has never been able to see out of it confused.....I will check with mum later .

Hearing test was weird...my kid's have had them where they press abutton when they hear a beep at different tones ....but this one was....

Background cracklling noise and a "non word" said and he had to touch the screen of the "word"said ...he did make lots of mistakes but I am not 100% sure if it was a hearing problem or an understanding problem ?

Anyway Audiologist appointment booked for through check....

We went to Specsaver's ....is that the norm sort of testing for adults or just their way ???

Poor dad I had been telling him he was going to hear beeps and he would have to press the button grin

Council tax form applied for and it is coming to me

DLA form completed ...not sent

Blue badge renewal completed....not sent

Bloomin heck ...how difficult is for me to remember to put them in the bloody great big red box !!!! grin

Taking mum to the doctors tomorrow to disscuss the result of a lump she found on breast and bring up councilling for her

DS3 is having a MRI on Weadnesday

Friday all day at hospital .....

That's my week sorted then !!!

flowers to you all

PostBellumBugsy Tue 04-Jun-13 09:32:09

Glad your DS had a good birthday party Bizzey and liking the sound of this Amazon Prime thing.

No idea on the hearing test - it is forever since I had one but what you describe sounds odd & is definitely different from my DCs had.

Question on the council tax. Am I right in thinking there is some kind of reduction if there is an adult in the house receiving attendance allowance?

Also query on the Blue Badge. Dad has to walk with sticks now following his stroke. Is that enough to get a Blue Badge or does it have to be a registered disability?

WynkenBlynkenandNod Tue 04-Jun-13 10:04:17

Flipping heck Bizzey, you are living up to your name. Really glad DS had a good time. I hope your Mum's results are ok. Has your DS had an MRI before ? DS had one last year and it was better and quicker than I thought it would be.

PostBellum, yes. Diagnosis of dementia is what is termed Severe Mental Impairment. This plus Attendance Allowance equals discount. I'm about to take Mum's form to council office with POA as I want to stress it must be sent to me, Mum will be devastated to see the wording Severe Mental Impairment. Haven't done blue badge yet so not sure.

More fuss from Mum about the Carers. Apparently her legs are red because the Carers don't do their jobs properly. When I said it was because she stopped her water tablets she said that was weeks ago. Er no, she's only bern back on them for two weeks. I'm very tempted to just go to the Post Office and stick a redirect on her post. She isn't rational however much she seems it some of the time.

Needmoresleep Tue 04-Jun-13 12:04:40

Bizzey, I remember the long lists. I ended up with a big bag of key papers, including my mothers passport, which I trundled up and down the motorway. At one point it was a Curver box. Now I am down to a tin where I keep stuff I need to take down on my next visit, and ....yippee...this week so far I have nothing in it.

You should find the list gets smaller as some things, like initial diagnoses and assessments, will be one offs. And you have spurred me to sort out my mother's Council tax. I am mainly done with registering the POA, and the junk mail has dried up to a trickle, so the the only big mountain still to climb is three years of tax returns. I may email my accountant and ask him to start nagging me.

BWN. Do get the mail redirect done. One possible rule of thumb might be

1. Is it something that will have to be done sometime within the next six months anyway?
2. Will it either make your life easier, or increase your mothers well being or financial security.

It is implicit in her signing the POA. She may rail initially, but I simply told my mum she had agreed (she had - I got her to sign the Post Office form though she may well not have known what she was signing). I take her anything she needs and print off her bank balances regularly. Looking back I am pretty sure her desire to retain control was because she was terrified of in some way losing her money and being left with none. However she could not cope and judging from the notes she used to write to herself, she found it all extremely stressful. Now we are through the storm and both in a better place, she has relaxed and other than demanding a cheque book, has not asked about anything.

Again where do you need to be in six months time? If so there is a good argument for bracing yourself and being assertive.

On the sheltered housing I feel it is worth looking at possibilities especially those linked with dementia homes. You should look at the extent to which they are future proofed. My decision was made easier because my mother was already in hospital/convalescent care and so the "moving twice" option was her going home first and then moving to sheltered housing - so relatively easy to move her straight. Her housing is quite future proofed and any next move will be at a point when she is not really aware of where she is, so perhaps less disruptive.

Your brother is not there every day. He does not hold his breath each time the phone rings wondering what crisis is about to happen. (Solar panels!) He does not have to then drop everything to sort it out. He does not have to ask his family support him at the end of the day when he is emotionally and physically exhausted, when actually you want to be the one providing support to your kids and DH.

1. Moving early allows better routines to be established, and therefore more skills retained and a better quality of life.
2. Vacancies in good places can be few and far between, so you may have to go on a wait list and take something when it comes up.
3. You should have a plan of action should your mother find herself in hospital. You can then dress it as "convalescence", with the promise that she can go home when she is feeling better. Knowing full well that "better" will never happen and with a fair certainty that she will soon forget about going home. (I was told that the home that my mother talks about going back to might well shift over time to somewhere she had lived in the past.)
4. Company, good food, and less stress should help her make the most of her remaining capabilities.
5. Once settled you both can relax and resume a much more normal relationship.

Oliver James suggests setting a point at which the decision on a move is made based on the point at which a carer feels they can't cope. Something like a given number of middle of the night phone calls, a level of incontinence, or whatever. He suggests that quite often when someone thinks about it they realise that the point has already passed.

On a different subject on what is a very long post and from today's Daily Mail.
MEMORY LOSS: FAST EVERY OTHER DAY
Keeping your memory sharp involves making certain lifestyle choices, particularly in relation to food, says Dr Sandrine Thuret, head of the neurogenesis and mental health laboratory at the Institute of Psychiatry, King’s College London.
‘There are specific neurons — brain cells that communicate with each other — involved in memory. The more you have of these neurons, the better your memory will be.
‘Recent research shows it’s possible to create more in adulthood,’ she says.
‘Diet has a huge impact. I try to do intermittent fasting. Every other day I’ll just have a light breakfast and a very light dinner — about 600 calories in total — although often it’s because I’m too busy for lunch.
‘Studies show that if healthy people reduce their calorie intake by about 30 per cent and increase time between meals, it improves their memory by helping create more of these neurons, although we don’t yet know why.
‘I also have fish such as salmon — full of omega-3 fatty acids —every other day, and keep fresh blueberries in my fridge. The flavonoids they contain are good for memory.
‘Exercise has a dramatic effect on these neurons, too, so every other day I run to work and back — about eight miles.’

Get running all.....

CMOTDibbler Tue 04-Jun-13 12:05:00

Mum and dad both have blue badges due to their poor walking - although the forms are long and require a lot of evidence of identity, getting them was very easy for them. Its made a huge difference to them.

I think a redirect on your mums post would be very sensible Wynken

WynkenBlynkenandNod Tue 04-Jun-13 13:17:48

Thank you Needsmoresleep, excellent post. I have actually taken a deep breath and did it in way back from council offices so it should start in a few days. Very easy, just waved POA and some id , waved the new debit card from her account and done. Haven't told her but there will be a letter confirming the redirect at which point she'll hit the roof.

Council tax is also done. It took the POA, exemption form signed by doctor, copy of attendance allowance and that will be back dated. Delivered Mum's new slippers and found her heating food in microwave which was good. She'd apparently just called me (though didn't tell me that) . Think it was to tell me she's rang the agency and complained about one of the Carers. Asked why and she said she had a list, had been keeping notes. Hopefully that will be on her file for SS to see if needs be. I can't be arsed to ring the agency, they will have to ring me if they want to discuss it.

I will go and see these extra care places I think and then I know what I'm talking about. I don't think I can do the fasting with gallstones but I can cut calories and eek out the time between meals. I'm getting a dog walk in every school day morning (she and the other dogwalkers would look at me like I've lost the plot if I try and run and there will be a mini earth tremour) Think I'm starting to feel a little bit better and my energy levels have fractionally improved. DD very tearful at the moment and doesn't know why so I do need to focus on her a bit more. Have to say the memory of the solar panel crisis does bring a smile to my face!

WynkenBlynkenandNod Tue 04-Jun-13 14:26:21

That was interesting. Rang the extra care flats with Nursing home on site. She was very helpful but said that they would need to have a doctor's report or further info as there is the concern that timeline of selling her house, buying a flat then selling again might be problematic given she has TIA's and could deteriorate rapidly.

They can't guarantee place in nursing home and sometimes some people need a higher level of nursing home, guess an EMI unit. She also said about the Dmentia deteriorating when moving though she said it often settles. I get the feeling with the Vascular element present, she was trying to gently suggest that she might be better of where she is then into a NH. She's sending me a brochure and I can look but I came off with doubts.

CMOTDibbler Tue 04-Jun-13 20:39:22

Its worth a visit though Wynken - the more places you see the more you'll know what you do and don't like. Rather like choosing a nursery!

Dad rang earlier to say his catheter had blocked and the DN and GP had been unable to get a new one in so he was waiting for an ambulance to take him into the urology ward. He'd put mum to bed downstairs so she would be OK till the morning. Heres hoping they get it sorted tonight.

bizzey Tue 04-Jun-13 21:24:27

Wow ,,What a rollercoaster of a day !!! If I had posted 1 hour earlier I was on a high on how good a day it was .....Then booooom one sentence can make it all come apart !!!

Story today .....

Appointment with mum with GP....Lump thing ..no cancer ..under obs...she has agreed to "talking" to someone about dad ....

Went to specsavers to book her appointment for hearing test (as well!!).... they had one in an hour that we took...she failed hearing as expected ...she was quite happy to talk about hearing aids...(which is a massive +++++ when you consider how "vain"my mother is !!! grin )

A "refreshment "was had wink and a bit of clothes shopping for our holiday in July.....

Only for my dad to go into one saying "they "had no money for her to have a hearing aid...and she just needed to turn the T.V up a bit (60% loss!!)

Gutted sad ...normally he would just say ...."with a sigh " !! how much do you need ??

For my mum fo be even agreeing to the aids is massive ...she was really excited ...and then dad done something ....???so not like him is hard ???

He has never refused my mum a thing (might moan about doing it for a day ...but you know what i mean !!)

A few years ago he would have said "Right ..you need them ...we will sort it out!"...or...."Boomin hell ...thought you were never going to get them ...that will be good "....

or something along those lines ifykwim !!

As anside I know we are going "private with these"....but are they better than NHS ???

Cant believe how many high and lows you can have in one day !

Wrong council tax rebate form sent !..

Posted other forms !grin

Blue Badge due to dad's HMR DLA slready done

Still gutted about dad's comment's !

topknob Wed 05-Jun-13 18:30:02

So mother managed to lock herself out today of her flat ! Good job I have a spare key here and she is a two minute drive away. She had to use the pull cord to contact the warden though who then contacted me. Funny thing is she never let's go of those keys normally they are always in her hand even when she is at home.

CMOTDibbler Wed 05-Jun-13 18:47:52

Bizzey, its not your dad talking, its the dementia. Your mum needs the hearing aids (and I understand the digital private ones are lots better), so she can't expect your dad to affirm things like he once did.

hmm on the keys Topknob. Did you find them? Would a checklist on the inside of the door help?

Dad spent the night in hospital after a litany of incompetence from the ambulance control. But a lovely nurse who had looked after him when he was admitted last time eventually got a catheter in, then called him a taxi at 6am as he couldnt sleep for worrying about mum. Bless him, it was the first taxi he'd ever paid for

topknob Wed 05-Jun-13 19:44:25

CMOT, your poor dad xx What happened with the ambulance people?

Fab idea about the poster, will do that shortly and put it up tomorrow. This isn't the first time, but the last time I actually found her keys in her handbag which she had. This time they were on the table in the flat.

CMOTDibbler Wed 05-Jun-13 20:00:14

Well, the gp phoned them at 5 in front of dad. They said it could be up to 2 hours which is fair enough, but obv his catheter had been blocked since lunchtime so getting painful.
At 8, he phoned to find out how much longer, and they denied all knowledge of any such call, and couldn't the oncall gp sort it out? On call gp says no, course not, phones ambulance control again, no , no record and told theyd take up to another 2 hours... Gp had a strop at them, but dad didn't get to hospital till 9.45 and though the nurse asked them to wait in the circs they wouldn't.

DN was coming to look at mums scar today as one bit hadn't healed. It was obv the nice dn who came out to dad as the other one wouldn't have looked at it

CMOTDibbler Thu 06-Jun-13 20:55:24

And now dads back in the hospital after his catheter blocked again and now the DN, GP and 2 hospital drs have had a go and can't get one in. Waiting for the consultant to come in to have a go now. Someone on the ward lent him their mobile to ring me.

Mum totally confused by it all, and is now obv asleep as the phone is ringing and ringing.

topknob Thu 06-Jun-13 22:11:22

Sorry to hear this, sounds a total balls up tbh. You ok?

Needmoresleep Thu 06-Jun-13 22:38:31

Poor you.

CMOTDibbler Fri 07-Jun-13 07:41:18

Ward phoned at 11.30 to say he was going home by taxi. Will be telling him we need to find somewhere for her to go for a week so he can have his op without worrying.
There is what looks like a nice Friends of the Elderly home near them with a dementia unit and secure gardens, so may start there for brochures

WynkenBlynkenandNod Fri 07-Jun-13 07:42:36

Really sorry CMOT sad please keep posting if you have time. We will listen and ply you with virtual wine. Am hoping today is a much better day for you all.

Memory clinic appointment for Mum today with a planned increase in dose of Galantamine. I think she might refuse to take the higher dose, we'll see.

PostBellumBugsy Fri 07-Jun-13 09:02:11

Sorry to hear about all the stress for your poor Dad as well as the catheter complications CMOT. Hope you manage to find some respite for him with somewhere for your Mum while he has his op.

Good luck with your Mum today Wynken.

CMOTDibbler Fri 07-Jun-13 11:33:07

Thanks guys, its lovely to have somewhere to vent!

The consultant urologist who managed to catheterise dad had to use his 'secret weapon' to get it in and told him no one else will be able to get a catheter in. Interestingly, the urologist knows me in a professional capacity and I'll be seeing him next week so will thank him.

Dad had had a day of it as mum vomited all morning, so he took her to the GP. Not their usual one, and he did a mini mental state exam and showed dad the score. Which was 2 sad
GP said he felt it was all getting too much for dad and that he wanted social services involved and phoned them there and then. They'll be round today.
And the attendance allowance forms have come and the carers centre are sorting out a time to come and fill them out.

So, bad night for dad, but things are moving. And he didn't argue too much about me sending for the brochure.

I thought maybe I should let my brother know about all this, but if he phoned them, he'd know. So stuff him.

WynkenBlynkenandNod Fri 07-Jun-13 16:08:19

Oh CMOT, that must be very difficult for you all, I'm sorry. FWIW with. Your brother personally I'd send a quick text or email telling him. I'm working on the principle these errant brothers will need to live with their consciences and we will always know we did the best we could. But that's just me at the moment and don't quote me on it when mine really pusses me off again.

Mum got into the car clutching envelopes today and I knew trouble was coming, could see one was the mail redirect letter. However she also had a letter confirming her council tax exemption due to person in property having severe mental impairment. That letter, the one I asked under no circumstances to go to her. She thought I had told the council those words so you can imagine. Thank goodness we were going to the memory clinic, the nurse was excellent and really defused the situation.

Mum now thinks post redirect went on so she didn't see that letter, has told me to take it off. Brother agrees to leave it and I'll repackage post to her after I've seen it <sigh>

topknob Fri 07-Jun-13 16:21:36

I also have a rubbish older brother confused who seems to think because he lives two hours away he cannot do anything. He rarely rings and does not help in anyway at all. I now don't bother to ring him with updates. If he is interested he knows how to use a telephone !

That is rubbish of the council to send that letter to your mum even though you explicitly stated that they shouldn't hmm have you spoken to them yet?

deliakate Fri 07-Jun-13 16:53:06

Having read the thread, I am sorry for all these families struggling with looking after ill parents.

I am not in this boat yet, my parents are both early 60s. But I live about 4.5 hours drive away from them, as do my 2 brothers. Obviously I don't know what will happen, but I imagine caring for my parents in any situation will fall mainly to me as the only girl.

I'm trying to persuade dh to move to another London commuter town nearer to my parents - a 3 hour drive is the best we will get. My children are 1 and 3, and obviously will find it much easier to move to another area now before school starts. Is this a silly idea? I just hate driving, it's dangerous, and if things go wrong I need to be a bit nearer.

WynkenBlynkenandNod Fri 07-Jun-13 17:22:50

Mine to be fair is always at the end of a phone but I don't think he gets how wearing and soukd destroying it can be. I did ring the council. They are apparently definitely changing the address to mine and I've asked for an apology letter that Mum has requested. But they can't undo the damage can they. I'm very cross in a resigned kind of way.

Deliakate, I don't know the answer to this I'm afraid. But I think now would be a good time to talk to your brothers and say to them what do they propose will happen if there is a problem with your Mum and Dad. Don't wait till there is a crisis an make it quite clear you will not be doing it on your own. Would there be any chance of your parents moving ? My Mum followed me down here which has helped no end but there was just her.

CMOTDibbler Fri 07-Jun-13 18:19:21

Deliakate, tbh I wouldn't move unless you were moving to with 30 minutes of your parents and you knew they'd stay. I live 90 mins from my parents, 60 min from their main hospitals and thats as bad as 3 or 4 hours tbh - I can't just whizz round there when they need it.

Your parents may stay well into their 80's (PIL are 70 and 75 and very well, friends parents are 75 and 80 and hale and hearty), so please don't be too put off by our tales of woe. In fact my GMIL lived totally independantly till she died at 96

WynkenBlynkenandNod Sun 09-Jun-13 10:57:32

How are things going CMOT ?

I was talking to a lady in the garden center yesterday over the hanging baskets as you do. She looks after her parents. Their solicitor advised them to get the Health and Welfare POA, said it's important. She was telling me about this case (apologies for Daily Mail link.

bizzey Sun 09-Jun-13 15:29:31

Hi all ...well I got to the end of this week ...finally !! I have been reading but just not up to posting !

CMOT I hope your dad is feeling better now . Have you had an update ??

After my big "low" on Tuesday evening I muddled through and took ds3 for his MRI on Wednesday. He was fasted in case of a GA and had been looking forward to having a picture of his brain .....but things changed when we got to the hospital sad.

He got quite upset when they put the cream on his hand to numb it in casse of GA and funnily ...refused to confirm his name ...and used his brother's middle name instead grin

But to cut along story (and a bit upsetting on my side !) I talked to him and my brave little soldier did it without the GA !!....The bribe.....

If he did it 1st time we would get home quicker I would not send him back to school for the PM and he got longer on the X-box ...grin

Good old x box !!

Though I did have to take him for his bloods as well which he hates(don't we all !) and he made a fuss there ...but to honest he does have to have about 7/8 vials taken !

Anyhow a migraine started so boys had a take away pizza ..while I curled up in bed blush

Thursday I was still feeling yuk ...so booked a taxi for dad and I to go to our "all day " visit to the hospital ...he has a card that gets discounted trips ....and his wheelchair goes straight in .

Friday was bliss ..no faffing around wheeling him to the car ...painfully watching him hold on to THE PLASTIC DOOR HANDLE THAT WILL BREAK IF YOU KEEP DOING THAT moment !!!

No heaving his chair into/out of the boot (I am only little !)
No dropping him off at drop off...then driving around for 20 mins looking/waiting for a space.....then going back to drop off yo collect him after as this hospital do not have passenger wheelchair acsseable places ....(phew!)

I have said this is what we are going to do now ....lots of arguments ie he would rather give me the money than the taxi driver and stuff....he was/is oblivious to how difficult doing this was to me .

But I have been firm and so has mum ...so it is taxi's from now on !!!

Alzheimer's appointment .....we saw a nurse ...who then got called out to an emergency for all of our time slot !...she came back and said she did want to do a new memory teast but we have to go back in 4 weeks for that as there was no time now !!

Got meds ...uped to 10 mg as he has had no side affects

So not really sure on "improvement " side of things

Just anther month to wait smile

Wow ....now you know why I did not have the strenght to post till now !!

Oh just to surprise you all ....neither brother has phoned to see how we got on grin grin

flowers to you all

bizzey Sun 09-Jun-13 15:40:32

Should say ..he gives me £20 to cover petrol....the cab came to £22 round trip !!!....and me not having to "do "the trip ....PRICELESS grin

PostBellumBugsy Mon 10-Jun-13 09:34:51

Bizzey, good news about the taxi - sounds so much better than you having to do it.

Any news on your Dad CMOT?

Wynken - so crap of the council to send the letter to your Mum.

Another exhausting day at the weekend. Mum has finally realised that Dad is not going to get better. She was a bit down. It must be so hard to realise that you man you fell in love with over 50 years ago is never coming back. It is kind of like death by a 1000 cuts - body still functioning but the mind is slipping away. Cruel really.

CMOTDibbler Mon 10-Jun-13 10:16:03

Bizzey, that day makes me feel exhausted just reading about it!

Dads been OK, and has managed to keep this catheter going. Mum had a couple of good days at the weekend, and now dad is all 'oh, I think she's on the up now, she just needed to decide to buck up' which is heartbreaking when you know she'll be back to 'normal' soon enough

bizzey Mon 10-Jun-13 20:28:02

CMOT Glad your dad is feeling better .

I feel for your dad in his comment ...mum was like that when I said they had upped dad's meds..."oh well he will be fine now won't he ..and he won't get any worse...he is going to get better "..I did not reply sad

She said something to me the other night that I cannot even post on here ....it made me so upset and angry.

Hospital for ds3 tomorrow (again)

Funny thing is they share the same birthday and I just feel they are always at the same hospitals...almost undergoing the same departments ...

Like the M&S double expresso though grin

Wynken ....need to get the proper form for my dad ...did you apply by "it's" name ...bad it got sent to your mum though ...I will deffo need it sent to me ?

WynkenBlynkenandNod Mon 10-Jun-13 23:38:13

I'm really sorry for everyone going through the mill right now. It is a very cruel disease.

With the form Bizzey I emailed the Council explaining she had been diagnosed with Dementia and they emailed the relevant form for me to me to print, I think it's exemption class u or something like that.. A doctor needs to sign it (the memory clinic kindly did ) and you need to submit a copy of the Attendance Allowance form. I took that plus the POA in so that they had everything and could definitely send it to me. She promised there was no way it would be sent to Mum but I guess whoever processed it forgot to change the address to mine so it went out to Mum. I hope all ok at the hospital for DS3 tomorrow.

CMOTDibbler Tue 11-Jun-13 10:43:09

Hope its all OK today Bizzey.

I have to share this with you all, because I need to write it down and no one else will get it.

Last night, a mug got smashed - no ones fault, the dog has a cone on atm and caught it off a low table. And I burst into tears and couldn't stop. Because it was a mug mum bought for me 10 years ago just because she'd seen it and it made her think of the cat we had then.
So a bit that, but also that thing that you know that apart from dh, theres no one to just buy things for me because they know I'll love them. No one to think about birthdays or christmas presents with love. No one to send a little card/clipping from the paper or wanting to hear about ds's school life.

Sounds so pathetic, but I'd just like someone apart from DH to care about us enough to show it.

Pity party over, back to work and trying to work out whether to book ds a dentist appointment for the afternoon of grandparents day at school so I can legitimatly take him out of school, rather than him not having anyone there again.

PostBellumBugsy Tue 11-Jun-13 13:23:23

Oh CMOT - I so understand. I have a long list of things I will never do with Dad again - even though he is still alive -which when I am feeling tired and down never fails to make me cry. Big hugs to you & yes, book the dentist appointment!

Hope hospital with your DS is going ok Bizzey.

WynkenBlynkenandNod Tue 11-Jun-13 16:28:28

CMOT, I see that totally. I've found with this it's the small things that floor me unexpectedly. They seem to lurk in the shadows then emerge to catch you unawares. I would personally have no qualms about booking the dentist.

bizzey Tue 11-Jun-13 17:38:30

CMOT I agree wuth wynken...we are so good ,practical,sensible on the big important stuff that I don't think we realise how much we are holing in and that things that might be trivial to someone else ....affect us more.

I wasn't just a broken mug to you .....it is the memories that mug held for flowers

Agree with "early" dentist appointment ...and a nice afternoon for you both to do something fun grin

DS is fine ..thank you all for asking .It was a minor issue of his persistant long lasting nosebleeds.He has had it cauterized today so hopefully that will be the end of them.

Needmoresleep Tue 11-Jun-13 19:46:15

You must also be exhausted. So much of what is goingon is beyond your control. A good weep over a mug was probably inevitable and better than letting rip with health professionals, DP, or DC.

Perhaps the distress is that you no longer have DP to look after you, even small things like buying you a mug you would like. You are looking after them now.

I will not be the only one wanting to buy you a new mug. And something for the other brave kind and capable people who are sharing their stories. Most important though will be to look after yourself as best you can.

Best wishes to all..

WynkenBlynkenandNod Tue 11-Jun-13 20:46:10

I need to rant. I worked today between dropping off DD and walking the dog, picking up and delivering Mum's new dose Meds on way home. Wrote all up in care book only to find she has more tablets left than she should.

Worked and just completed last bit just as left to get DD, usual stuff with them. Then had to take something to Mum's. Whilst there had to get Sky working again, explain a bill to her, find invoice from gardener. Came home, wrote letter to bank re account fee, transferred money from her account to mine to cover chq for gardener, file invoice. Explain why she can't come to Italy this year and nod along when she says she is going to Thailand in two years time.

Then the bloody phone goes again. Wynken my coffee hasn't arrived. Yes it has Mum it was delivered last Wednesday and you told me it had come. No I didn't, it's not here. It must be it's a half kilo drum of coffee. Well what type is it? Nescafé Gold Blend as you said. Well it's NOT here. Ok Mum shall I order you another drum? Yes please.

Off to Amazon to order coffee, ring back to say will be there on Thursday. Oh I think I might have found it on top of the kitchen cupboard, I'm just getting the stepladder. No Mum do not under ANY circumstances get up the ladder (TIA's mean dodgy balance).

Get in car with some coffee decanted from my coffee jar. Find big stepladder in hall, little one by kitchen cupboard, one intact Mother. Go up stepladder to find two empty drums of coffee. Look in coffee cupboard. Find coffe drum, stifle lots of swear words. Go to door, Hang on Wynken, can you make the light go out on my mouse ? No I can't . Well you're no use. Night Mum.

Return home, take blood pressure medication and heat wheat bag as gallbladder attack imminent.

PostBellumBugsy Tue 11-Jun-13 21:02:52

flowers Wynken. Can you have a glass of wine or will that make gall bladder worse?

WynkenBlynkenandNod Tue 11-Jun-13 21:16:39

Yes probably but I think gallbladder is actually going to behave, the wheat bag helps. I am armed with Gardeners World Magazine and DH and I are going to watch Dexter.

Here's some virtual wine for anyone feeling the need.

CMOTDibbler Tue 11-Jun-13 21:22:38

Oh Wynken, have a few wine or brew. Or just a quiet lie down in the bath.

WynkenBlynkenandNod Wed 12-Jun-13 12:32:16

Sorry to go on last night. Gallbladder behaved but I feel like I've done 10 rounds in a boxing ring today , am so shattered.

I've realised that although she's sounds and looking better she isn't really. She doesn't understand bills , she can't turn off one switch to reboot Sky, she's losing things and doesn't totally grasp the dangers of things. If I hadn't called her back last night to tell her the coffee was on order I think she'd have been up that big ladder. She was also making plans for two years time to fly out and see my brother - said she didn't think she'd be fit enough next summer so would have to be year after. So basically she's lost her insight into her condition again,

She can stay where she is but with support. And that means me beng on call. If that's what it ha to be I need her in part of my/a house do I can walk through a door, not have to jump into a car each time even though she's very close. Emailed my brother last night, he's strangely absent . Don't know the solution to this as am totally knackered . Taking DD to Orthodontist now and will keep pondering .

PostBellumBugsy Wed 12-Jun-13 12:46:35

You don't need to apologise here. This is the place to let it all out Wynken.

I don't have a solution for you though. Were you looking into accommodation for her with more support?

Needmoresleep Wed 12-Jun-13 14:02:52

I am not surprised you are knackered, or that CMOT is weeping.

I have only just, this week, emerged from an exhaustion that lasted 6 weeks. I felt really bad, as not only did I ask DH to hold the fort whilst I spent the best part of four months focussing on my mother's needs but then became completely idle, spending time catching up with friends or just hanging out. (The RA exhibition yesterday, plus lunch in ChinaTown with a friend, Henry Moore and Rodin last week, and a nice half term trip with my son to look at University campuses.)

This week is much better. I feel really energetic and have started tackling things I should have done ages ago, even to the extent of having a new stockpile of home cooked food in the freezer.

My guess is that my exhaustion stems not just from the crisis but the three years of anxiety when I knew something was wrong but was unable to do anything, and the resultant regular clashes with both DM and DB.

I know I had it relatively easy. My mother could not return home and so we were in a position to impose a solution on her, and she had a good range of choices. The rest of you must be shattered. I wish I could organise for you all to have six weeks off both family and parent duties. I can't so vent away. Having been there, or close to there, I can offer full sympathy. Unless you have plans to be in London when I could extend to lunch and/or a matinee.

I did my weeping in NatWest. The counter staff knew my mum and were very very kind to me. I dont know if that is the sort of advert they want. The bank you can weep in.

bizzey Wed 12-Jun-13 19:44:53

Need you are so kind in your posts....I have got a feeling though that if we all went and had lunch and then a matinee...we would all end up having a snooze during it !! grin

Not a good advert for the matinee performance !!!

whataboutbob Wed 12-Jun-13 21:53:31

Just a thought- maybe we could all think about meeting up. I know it could be tricky due to commitments, geography etc. but worth a thought- maybe an afternoon in London or somewhere else that would suit most of us.

bizzey Wed 12-Jun-13 22:40:40

I am London !! (ready for anything !)

WynkenBlynkenandNod Thu 13-Jun-13 07:36:35

You're all lovely smile. Bad phone call with her yesterday but by that time I felt really dizzy a d had to go to bed. I've a couple of phonecalls to make about housing. Problem is we don't want it buy. Flat as reality is she's likely to need to move to a home in a hurry because of the Vascular Dementia. But I suspect being a homeowner will exclude her from a lot.

It's time I stop being available to do things. I'm going to say I'm unwell and can't do them blaming my gallbladder (which may well not be a lie at this rate.) meeting for Health and Welfare POA tomorrow which I will do as we need it. Brother has said he will come in the summer and we'll clear her spare room and garage. Meanwhile I'm supposed to remove stepladder but can't face it as she'll kick off.

Taking it easy today, I'm not going to walk the dog. Cleaner is supposed to be changing her bedclothes today, I shall be cross if she doesn't let her, it's been weeks again. I'm down south, towards south west.

Needmoresleep Thu 13-Jun-13 08:31:00

Poor poor you.

The kicking off is awful. Some of the stuff hurled at me is unrepeatable. Dementia brought fear, anxiety and a loss of inhibition.

My advantage perhaps was that I could not just pop round to keep propping things up. So mail redirect stayed, and things done simply because I had travelled 150 miles to do them. Also because of the broken hip, my brother accepted something needed to be done, and so though he repeated back some of her complaints, by and large he left me to it.

Looking back the really important thing was the move. I really hope you can find something suitable. Or someone else has advice on how to impose major changes/decluttering when someone remains in their own home. My guess it may have to involve a health crisis where you have no option but to get in there and sort out both her home and her life.

Good news about your brother coming over. I would be tempted to ask him if you and your husband could take a few days away with him holding the fort. You might even suggest the kids stay to get to know their uncle better. The aim might then be to have a conference with your brother and then you both present an ultimatum to your mother, which would cover the things that need to happen to make your life manageable not just for now but going forward, and enable her to stay safely in her own home for as long as possible.

To support this approach you might ask one of the SS or health professionals which tasks they feel you need to be taking over, managing or supervising.

I have felt guilty about my Panglossian posts. But it is amazing. My mother fought bitterly to retain every inch of what she saw as her independence. But taking away those elements that she did not have the capacity to manage, has transformed her life and given her more independence. Feeling better has increased her self awareness to the extent she can agree that decisions made were the right ones.

The difficult thing about dementia is that there is no recovery. It is bereavement in a thousand steps. The good thing is that if you stand firm and insist, your mother will eventually forget, say, she ever had a step ladder, or used to receive post.

PostBellumBugsy Thu 13-Jun-13 08:51:34

Needsmore - your panglossian wisdom is invaluable. Please keep on sharing. It is such a shame that it has to take a crisis to get these things sorted.

I would dearly love to sort my parents out, but Mum will not have it. She is desperately clinging on to their dream of 35 years ago (the crumbling farm) and can't see that they would have a better quality of life & more independence if they were somewhere more manageable. I do understand why she feels this way but it is soooooooooooooooooooooooooooo frustrating.

I know that there will be a crisis at some point. Dad will have another bleed in his brain, his dementia will send Mum over the edge, or she will get ill or fall & then it will be bloody crisis management instead of something calm and well thought through that we could do now.

PBB wanders off to bang her head against the brick wall some more.

Lovely idea to meet up, but for me it would be almost impossible at the moment. I work full time, spend weekends "enabling" my parents to stay in the crumbling farm and any time left over is driving the DCs to all their activities and social life, which I am trying hard to maintain for them. Just as well I am old enough to know that this won't last forever but am sad to know it will get alot worse before it gets better. Sigh.

topknob Thu 13-Jun-13 10:34:46

Sounds like everyone needs some thanks and brew then later wine x

I have some good news, mothers dla application was granted and also her ESA so she has some money coming in now. This is a weight of my mind !

Now need to sort out renewing her tenancy agreement which runs out shortly.

I am in Essex, smile

Needmoresleep Thu 13-Jun-13 10:44:39

And when the crisis comes you may well discover that things were worse than you realised and there will be waves of real anger as you know it did not need to be like that.

What do you want to happen?

My guess is that your mother does not want to move your father. It would in some way be a betrayal of their dream, and a further bereavement. And that you are looking for two solutions. First to help your mother manage whilst your father is alive and then what to do after he has passed away.

My mother, who was 80 at the time, somehow held it together through my dad's terminal cancer, but then had both a major health scare and a marked deterioration of her cognitive functioning. If tiring for us, caring for the elderly infirm must be exhausting for their partners. If you are just clinging on, it is very hard to take a more strategic view.

However eventually, as you say, something will happen which will make it impossible to go on.

There won't be that many local options, so there may be advantage in exploring them now, to enable you to move quickly when your mum starts to waver or the crisis hits. The health visitor or other professionals should be able to provide a steer towards sensible alternatives. You then may need to consider whether you need to sell the farm to buy something else. Or are you and your brother able to access funding. (We ended up extending our mortgage in the short term to be able to provide bridging finance.)

To be honest I was completely unable to have the "what next" conversation with my mum. However if my dad had not had a fatal stroke I think my mother was getting close to a point when she would have been willing to consider respite or hospice care for my dad.

In the short term is there any scope for tenants? A young couple from the village perhaps. Rural accommodation is always hard to find. An agreed schedule of labour instead of rent? Though like au pairs the right person is wonderful, the wrong one a nightmare.

After my father died my mother was still unable to give up their dream flat, even though it meant she was very isolated. I wish I had worked harder to look at alternatives with her. One advantage of eventually buying a sheltered flat was that there was a level of marketing aimed at her. She was invited for lunch with a group of other residents, shown round by staff, and the experienced manager was able to talk through the benefits. Each time she went she left enthused. (Then, obviously, she forgot!) If the next step is likely to be something private then worth visiting early. Half the sales work will be done for you, she will be able to see the alternative on a practical level. Who knows, she may then see that warden support etc, would allow your dad to stay with her longer, rather than having to go to a hospice or hospital.

PostBellumBugsy Thu 13-Jun-13 11:13:49

Needmore, my Dad also has advanced/terminal cancer which is busy metastasising (sp?) all over his body - which I had forgotten in my previous whine. If the bleeds in his brain don't get him, the cancer prognosis is about 2 years.

In my ideal world, we would get a carer to come and live in with Mum and Dad now. The carer would lift the burden off Mum, who is 79 and would let the rest of us stop worrying quite so acutely about them being all alone in the middle of bloody nowhere. With this in place, we could then go about calmly finding a smaller house in the local village for them both to live in. It is going to take about 6 months to clear the farm house & outbuildings of the 35 years of crap that have accumulated (think at least 2 insurance write-off cars, farm machinery, two broken boats and furniture from the houses of 2 dead relatives just to be starting with), plus give notice to the people that rent the fields for grazing. At some point Dad will have to go into a hospice, back into hospital or will die - but at least Mum wouldn't then be on her own in this crumbling place in the middle of nowhere.

WynkenBlynkenandNod Thu 13-Jun-13 11:52:24

I'm resigned to it being a health crisis. I can't get her into Extra Care Housing rentals as she has a house. Don't want to buy a flat as would then have to sell it to fund care home fees and I think she'll end up needing to go at short notice. My only hope is Abbeyfields who are ringing later.

There is no way in a million years my brother will step up to uncle duties. I'm not totally convinced he'll declutter but think he probably will. Just been to see another Home, that was very depressing. Posh expensive one this afternoon.

I love your posts Needsmoresleep. They give me hope I may just emerge from this with a modicum of sanity remaining.

Needmoresleep Thu 13-Jun-13 12:11:38

My father had a brain tumour with about a year long prognosis. My mum started wavering when my dad suddenly started to fall, and she could not lift him. I think then I could have got her to look at support, and indeed had her agreement that I attend the next health visitor visit. Then two days later he had a bleed into his brain.

Trouble for me was that having failed to get support in place, or agreement to a move, during that crisis, I had to wait for her own crisis. The farm sounds like a nightmare. The only consolation is that you should help others facing hoarding/accumulation nightmares feel better. You clearly don't want your mother there on her own.

One aspect of all of this is that we end up coping with decisions our parents have made. At the end of the day though, the farm is a decision they made and though you will help if you can, they may have to face the consequences of that decision.

However you are right. There needs to be someone there overnight. Is there anyway you and your brother can try again, armed with advice from SS or health professionals and taking on board likely progression of his illness. On the basis that you are helping her help him.

On house clearance you will find that, depending on how much you want to hang onto, there will be an army of auctioneers, scrap metal merchants, charity shops and house clearance people eager to take things away. My problem was that things were chaotic and I needed to clear to find key documents and jewelry hidden in strange places. Also my mother was unwilling to let go, so to keep her happy, I packed anything of value into a set of large storage boxes now parked in the spare cupboard in her flat.

Would any of the tenants mow the lawn. Could some sheep to graze for a day or two?

PostBellumBugsy Thu 13-Jun-13 12:29:57

Needsmore - thank you & as Wynken said your posts do give hope! smile

We already have one of the local farmers in to make hay on the basis he can keep what he has made and he'll come back at the end of the summer and make silage.

We also have another small holder grazing sheep in the smaller fields, along with the local stables grazing horses, but the problem is the orchard and garden areas which Mum has spent the last 30 years nurturing & will not let animals graze on. My brother has taken 2 days off work to mow these areas this week - which on the face of it sounds great, but is actually just more "enabling"!!!!!!!

I think another problem is that Mum is slightly bonkers too. She has always been eccentric & stubborn & now has it in her head that they will both only leave the place in boxes. It is a real dilema as to carry on "enabling" this state of mind by being helpful and daughterly or just to stop this & force a more realistic conversation.

Anyhow, enough whining from me. I think like Wynken I am resigned to a crisis forcing the issue. It just makes me angry.

Sorry to bleat on so much - but there are so few other outlets to vent - specially as I don't have a significant other.

Needmoresleep Thu 13-Jun-13 13:01:37

The stress and the sense of loss and bereavement is bound to send anyone slightly bonkers.

What I failed to spot were early signs of dementia. They are not easy to pick up, though in retrospect I realise that my mother's emotional responses to the situation (including some unhelpful aggression and anger) were probably influenced by the dementia. Later there was further evidence including hoarding, giving up cooking etc, which suggests her memory and ability to stay on top of things had been failing for a while.

If you think there might be a problem, and I assume that there is a list of possible dementia symptoms on the Internet, you should find that good health and SS professionals are alert to the risk of carer failure and so might suggest a quick memory test which could then lead to a referral. Lots of ifs there. However if there is a problem you at least know that your mother's decision making may be impaired, and that your decision making needs to take this on board.

Otherwise I would step back as much as you can, especially from the day to day enabling. Let the grass grow! It could be a long road ahead and you need to preserve your strength.

WynkenBlynkenandNod Thu 13-Jun-13 13:22:33

At least I we get it out on here it is out of us to some extent which has to be better than bottling it up. I now know categorically there is no rented half way house for Mum, it's buying or nothing which just isn't a good idea in her circumstances. I have spoken to some lovely people but they all agree that she falls through a cracking the system. Have told my brother I'm not removing stepladder as she will shout at me and I'm fed up with that.

WynkenBlynkenandNod Thu 13-Jun-13 15:04:48

60 grand, flaming 60 grand a year. It was much nicer though.

PostBellumBugsy Thu 13-Jun-13 15:12:50

Oh my good God Wynken. No wonder some people move into hotels.