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Any experience with stroke as well as dementia?

(9 Posts)
notaflyingmonkey Tue 30-May-17 19:27:38

I posted on the Dementia board, but didn't get any response, so posting here as well.

Mum is 89 and has mild dementia, lives independently. She can, at times, appear lucid eg when asked 'how much do you drink?' she will give the answer she knows they want to hear, despite the fact it's not true.

She had a bleed on her brain a couple of weeks ago and has been in hospital since. Clearly the NHS is overworked and understaffed. But I think she has deteriorated since she has been in there, but every time I ask to speak to someone about her, they say she's fine. I have no idea what the prognosis is for her - TBH the worst outcome for her would be years in a nursing home (she's a very private, independant person).

Does anyone have experience of this who can give me an idea of what to expect?

Needmoresleep Wed 31-May-17 09:50:20

No solutions. It is normal for someone with dementia to take a dip in hospital. Their orientation is so dependent on familiarity and routine.

That said in your position I would want reassurance that the stroke has not led to any brain damage or is associated with vascular dementia. Or that, in a warm hospital, perhaps not drinking as much as she normally does and surrounded by ill people, she has not picked up a UTI or similar.

My 88 year old mother, with dementia, was in hospital a few months ago following a fall caused by a UTI, and I pushed for an early discharge, albeit with hugely expensive 24 hour care, simply because I wanted her to retain as many independent living skills. But a stroke is different and more medical. If she is discharged though I would go for too much support in the early days rather than risk having too little and a repeat hospital admission.

I am facing similar problems in that my mother, happily settled in very sheltered accommodation and with a carer coming in daily, had bad hip pain. My fear too is that a medical problem and dementia may be the tipping point, which forces her down the care home route. The X ray is today, and my fingers are crossed as it is a decision I don't look forward to making.

I would start really asking round about different alternatives. Sheltered, care homes etc. All sorts of people will have knowledge/experience: vicars, plumbers, estate agents, and there is a great deal of variety in quality of provision.

I would also look at convalescent care to see if a break, where she is fully looked after and can have a rest, could help her back on her feet. Or options for care at home. It will be vital on discharge that she eats well.

Others will know better than me, but I would try to make early contact with the discharge people at the hospital to discuss options, and what forward planning can be done, like a physical assessment of her home by social services. Neither you nor the hospital will want her in hospital any longer than she needs to be.

Its grim isn't it.

notaflyingmonkey Wed 31-May-17 12:20:09

Thanks for the response @needsmoresleep and the useful tips. I have just been on the phone to Pals to see if I can get an idea of prognosis, as I feel I am unable to plan for any eventuality without knowing where the land lies with her recovery.

Needmoresleep Wed 31-May-17 16:37:51

A further thought. Do want you can, if you have not done so already, to ensure you have access to or knowledge of her finances. A lot of your choices will depend on how much money there is and the extent to which you can decide on her behalf. For example it can take a while for community services to gear up, eg physios, time you may not want to lose. If you can fill gaps privately it helps a lot.

notaflyingmonkey Wed 31-May-17 23:00:05

Yes, I have today filled out the form for financial POA which I was refused last year. It makes sense that I get her finances sorted and am able to pay for things on her behalf.

Needmoresleep Thu 01-Jun-17 13:30:01

Remember this can take two months to come through. In the short term it can be worth considering a third party mandate form which you get from the bank, which see signs and which allows you access to her account including internet banking. This can access can then be converted to Attorney. It only takes a week or two to come through so was really useful in the immediate crisis.

notaflyingmonkey Thu 01-Jun-17 20:48:56

I went to her bank today to ask about third party access, and they refused it on the basis that mum wasn't with me, or available for a home visit.

FuzzyPillow Thu 01-Jun-17 21:11:15

flowers OP.

I was coming on to give advice, but Needs has already said most of what I would have.

I'd really try to grill the doctors on the Stroke issue.

Also, do you have a vague idea of finances? Eg. Is she likely to have just a few thousand, or squillions? Does she own her own home? I suggest reading up on the funding rules (esp the magic £23k threshold).

I found with my relative that good nursing homes have very long waiting lists and are also very understanding about cancelling a place on the waiting list. We ended up registering with 4 then picking the best one available at the time (which turned out to be a really excellent one owned by a chain, (and trust me, I'm a fussy customer!!) if you'd like the name of the chain I'll PM you, though of course no guarantee others in the chain are as good.

notaflyingmonkey Fri 02-Jun-17 08:46:45

thanks fuzzy please PM me, as I am a complete novice about this. I keep grilling the nurses etc to find out in their opinion how much of a recovery she is likely to make, and keep getting told 'she's fine', which I guess is nurse code for we need to wait and see.

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