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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

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