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

[CMOTDibbler]

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

Is there scope now to argue that your dad needs to fully recover before your mother comes home? Perhaps respite or convalescent care? Given what your dad has been through over the past few months it is hardly surprising he is ill. The same applies to you.

Best wishes to all.

Dad is insistent that he's taking mum home with him today. I've arranged with the home help he'd spoken to last week (works for herself) that she'll pop round this evening to see them, then be visiting twice daily for a week at least - but she is flexible round her other clients.

He is coming round to the idea of care, and gave me a brochure of care homes in their county last week.

Glad to hear someone is coming round PostBellum. It sounds like your dad needs some care outside the home to give your mum a proper break - is there a day centre he could go to?

Crikey CMOT, they are both going home today. Have they managed to stabilise your Mum's diabetes? Has she agreed to take her insulin going forwards?

I watched the news last night, and there was a piece about the paucity of care for old & disabled people & I thought - damn right it is poor. I felt for every single elderly parent on this thread as I watched it.

Dad gets even more agitated when removed from the familiar and hates being separated from Mum, so I think a day centre is pretty much out of the question at the moment. I think she / we are set to struggle on for a bit and then he'll either deteriorate physically again or his mental state will get so bad, that he'll have to go into a home. We have a meeting with the lawyer on Friday to try and get our heads around who owns what & what funds exist to support them as all of this unfolds.

I guess talking about CH is your Dad gradually accepting he isn't going to be able to cope. And though a very hard thing for anyone to accept, he is on the path there. The idea of respite as a gentle introduction is a good one if he would consider it.

PostBellum, meeting with Lawyers is a very sensible move, so much better than to be doing this in a crisis. Will your Dad eventually settle with a Carer whilst your Mum goes off somewhere ?

Mum won't take the insulin. But she does look better for taking all the other medication properly, and having food and drink pressed on her regularly. Hopefully with the massive drop in her weight, the tablets alone will be enough - both of them are type 2. At the moment, its dads blood sugar thats really causing the problems.

Wynken, he has some regular carers now, who he is ok being with. To be honest, a daycentre type place might be possible, but they live out in the sticks. The nearest daycare centre is over half an hour drive a way for an ordinary human, probably nearer an hour for my mother!!!!! I also wonder what Dad would do there - he has no interest in anything at all - really, really nothing. He can't speak properly, so can't tell anyone anything & he can't even follow the simplest of instructions or directions now. Also would they be able to catheterise him and clean him when he soiled himself?

CMOT - is there a reason why your Mum won't take her insulin? Is there anyway of sneaking it into her?

Well, dad is home now... but no mum. Not quite sure what happened, but having been told that she could go home with dad today, he was just leaving his ward when they phoned to say that she had to stay till at least tomorrow. She was sobbing, and he's in a right grump now. Not sure what the story is tbh.

Mum just refuses to be injected - and unless dad pins her down, you can't make someone. But she's really funny about her tablets generally, and they frequently row about them.

The day centre mum has been to has transport laid on. There seem to be a few things each session to engage all abilities, but they also offer things like a bath service (walk in bath with full hoist available), hairdresser, podiatrist and so on. I don't know about catheterising, but they'd def do the pads. Might be worth calling and asking?

Oh dear, that sounds distressing for both your parents CMOT. I hope your Mum can go home tomorrow.

I'll look into the day centre. I have a feeling I'll get resistance from Mum but it has to be worth a try.

What worked on my dad about the day centre was that he fretted about the things that he needed to go and do, but couldn't take her with him.

So, I pitched it as a guaranteed day a week that he could do whatever he needed to get done between 9 and 5.

Hopefully mums on her way home. Just realised I didn't tell them to make sure she had a vomit bowl. Oops. At least shes on hospital transport.

Fingers crossed your Mum is now home CMOT and they settle back in well.

PostBellum,our local day center has transport too. CMOT's approach sounds good and maybe you could say it's important she takes a break or will become ill and possibly unable to look after him.

Solicitor going to see Mother next week and Brother will ask if best for me to resign or do a new POA. Unfortunately she has been ill.

Acts of kindness from friends yesterday - one box of chocs plus had haircut and I'm pretty sure my friend didn't book anyone else in as she knew I'd be upset, has pointed me towards counselling for £10 a session and recommended me a good book.

What lovely friends you have Wynken . You could do with some pampering.

Its such a pity your mum has been ill, when she was so well in the NH

Mum is home - will call later and find out how its all going.

Talking of lovely acts of kindness, I should thank a poster on here for some "above & beyond" support. Needmore - you know who I mean.

Wynken sorry to hear your Mum has been unwell - hope it is nothing too serious.

CMOT - hope you have a good phonecall later & your parents are happy to be home and coping ok.

I'm debating whether to raise the day centre thing with Mum. To be honest, I'd have to go and see the nearest one myself, as I'd be worried about leaving Dad anywhere now. He can't string even the most basic sentence together. Yes & no is a struggle & he is incapable of making choices. All his liquids have to be thickened, he is a choking risk and a fall risk. He needs catheterising 4 times a day and unless watched very carefully will soil himself too. He is not interested in anything - so not stories, not puzzles, not drawing, not singing, not the TV, not a conversation - absolutely nothing. We have tried everything. Even when you take him out for a drive, he spends most of it picking at invisible bits of lint or fiddling with the gear stick & hand brake.

The elderly patients nurse came to see him on Tuesday and said she would report back to the elderly patients doctor. Mum is going to chase that up today. If there are meds that could make him a bit less restless, so he would sit for a while, I think that would make a big difference.

This whole thing has shown me there are some lovely people around and some great health professionals. Don't know exactly wha is wrong with Mum but assume not serious as no sign of Brother returning.

Glad your Mum is home CMOT, fingers crossed all goes well.

PostBellum fully understand you wanting to see the Day Center and think it's a good idea if you can. They'll be able to explain to you exactly what they offer and whether they feel they can help . Then if they can, you'll feel more confident speaking to your Mum about it. Thing is though, it's yet another thing for you to do.

Well, apart from mum spending an hour this morning not knowing who dad was, they seem OK. SS carer turned up at 9pm last night, and they'll be getting care from them for 28 days, once a day.

Dad also has someone coming in privately twice a day who will help him change bed, put washing on etc.

Typically, their car has packed up. But this does mean dad only going out on the scooter, so less stress on him

I'm glad it's generally ok CMOT, though your poor Dad when she didn't know him. Sounds like maybe a slow car repair in order then.

DH has updated me. Mum has a stomach upset and thinks the Carer has poisoned her. If she goes any where it be back to where I found. Hope he's discussed it with them to see if they will take her after what went on. I think progress is happening on the legal front of Will being amended and new POA's with Brother as Sole Attorney.

Hello all - small bit of good news from me. Had better visit with parents this weekend. The elderly health GP prescribed Dad some temazepan and it seems to be helping a lot. He is sleeping at night & even better is that he is a bit calmer & more relaxed during the day. He actually smiled when I was with him, it was a genuinely wonderful moment.

Hi PBB - great to get some good news on this thread. It just goes to show that the right drugs at the right time can make a big difference.

How's your brother doing Whatabout?

Well, not too good I think. The realisation that he has schizophrenia has been quite a hard one. I haven t even discussed it with him. He has a lifelong habit of avoiding discussions about his mental health and treatments, except on very rare occasions. If you try and force a discussion or even just bring one about gently, he clams up. When I went there last Thursday, he did'nt even come out of his room and I didn't have the energy To pursue it, I just focused on Dad. There is as usual so much to do I'm always playing catch just managing Dad's affairs. He came to stay with us at he weekend and I had to pick him up, then I took a risk and put him on he train home, but the guy at the station this side was very nice and walkie talkied someone to make sure dad got off at the right station.
I think we're getting close to the point where both dad and brother can no longer live in the house. The meeting a couple of weeks ago aired the possibility of sheltered accomodation for bro. Then dad will have to go into residential care. I am dreading it, but there is also a sliver of me who thinks once that's done, I'll be freer. Dad will oppose moving will all his might, but as has been pointed out he doesn t have much insight, I have honoured his wishes and supported him at home at great cost to myself but it s getting impossible. It 's really sad that this is what my family has come to.

whatabout, huge sigh on your behalf. No one talks about how tough and sad this kind of thing is - it is almost like it must happen to other people.

It seems to me, from my own experience and those of others on this thread, that sometimes things have to get to the point of being intolerably awful before they get resolved. I hope that your Dad will accept that moving into sheltered or residential care may be better than it becoming intolerably awful where he is now!

We made some small progress with plans for the future when we talked to the solicitor on Friday. Nothing is going to happen fast, but Mum has agreed that she won't stay in the damp, cold crumbling pile until she is carried out in a box (as previously stated) but will move into something smaller in the nearest village when Dad dies or has to go into a home / hospice etc.

That's lovely you had a smile from your Dad PostBellum. I know it must be very hard to talk of a time when he's not at home but I'm glad your Mum is thinking about the future.

Bob, you're in a very difficult position. But having been through it, you are right, you will be freer. But more importantly you have done everything you can to carry out his wishes and there does come a time when it's just not possible. It's important, though hard, to be realistic.

I had an unexpected phone call from Mum yesterday . I have agreed to go for a cuppa when she has a new Carer as the current one is nosy and there is dust in the air. She said, almost to herself, DB wouldn't believe she had called. She was right, he had to check with DH! Apparently she doesn't think I am after her money any more (I'll have a job, have been written out of the will at my request).

Wynken - that's so great about going to have a cup of tea with your Mum. I'm so glad.

Yes, that's good news, maybe she'll realise you're not the big baddie here. But my advice would be a bit weary, don't get sucked back in. As my counsellor would say (!!) what about your boundaries?

I guess it is, just hadn't expected it. She's got to remember to ring again though. A friend was here when the call came and she's insisting she comes with me, for which I am very grateful.

Won't lie, I'm very worried about being sucked back in. Another friend pointed me towards some subsidised counselling and hopefully that will start fairly soon. I don't want to get to something going wrong and she rings me and not Brother or he rings me to sort.

GP said not to be involved in her care so will keep repeating that. There is a solicitor going next week to do the H&W POA so any problems and my Brother will be officially responsible when she loses capacity again plus I've sent off form to resign the financial POA. I have a sneaky suspicion she might not be taking her Galantamine when given but that's not my concern so won't mention it.

From a practical Pov it s got to be a good thing your brother's on the H&W POA document, that'll ensure he is called when the next crisis occurs and will force him into an engagement with your mother s care ( presumably). The best case scenario is your mother comes to her own realisation t hat she needs to live in a supervised environment where her needs can be met and any issue dealt with promptly. Otherwise I guess it'll be a crisis that precipitates the next move. I m pretty sure that's the way it'll go with my dad. He won't contemplate moving.