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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

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.

freddiemisagreatshag Fri 03-May-13 11:30:18

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!

freddiemisagreatshag Fri 03-May-13 16:35:53

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!

freddiemisagreatshag Fri 03-May-13 16:55:13

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.

freddiemisagreatshag Sun 05-May-13 07:26:57

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
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.

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