Hello again

[Chemmy]

Hi guys.

Didn't expect to be back here but I'm afraid we have had some bad news about MIL this time.

She had a bad fall last week and is now in hospital. Diagnosis is small vessel disease with signs of VaD.

As some of you may recall, my mum had Alzheimer's and certainly the early stages do appear to be different with MIL this time, although it does explain a lot of her behavioural issues these last couple of years.

Whilst in the hospital she has been having intermittent delusional periods. Crackpot stories - benign and quite amusing actually - but she seems to be capable of presenting herself very well to the doctors when she wants to as she is desperate to be discharged.

This is very different to my mum with AD who couldn't have pulled the wool over anyone's eyes and really I wanted to know if that pattern/ability was more common amongst those with early stage VaD.

 

[Grannie G]

I hate to say welcome back Chemmy.

I don`t know enough about early stage Vas Dementia, and we all know everyone is different, but the fact sheet might help.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=161

 

[Chemmy]

Thanks Sylvia

It's the delusional behaviour that's slightly baffling. My husband and I have witnessed it first hand as has my younger SIL over the last few visits, but my elder SIL hasn't. I just wondered whether delusions were a common symptom of VaD, and whether they were likely to be long-term but intermittent (ie MIL is quite high functioning mentally in between) or may stop altogether after a while.

 

[Grannie G]

I don`t know Chemmy.

My husband had severe delusions in the middle stages of Alzheimer`s and I have read on TP of delusions affecting many dementia patients.

Perhaps the best is to keep a log of your MiL`s behaviours and wait to see how many more responses you get from other TPers. .

 

[Chemmy]

The log is a good idea. I'll suggest that to my SIL, who's the one on hand.

I'm surprised at how well my husband had taken the news, considering he knows only too well what might lie ahead. At least this time round, we're much better prepared and can start to work through the options for MIL's future care.

She's being sent home next week with a full 4x a day package. Sounds great but how it works out in practise remains to be seen. We're 200 mls away so there's a danger of being regarded as an 'invisible', although at the moment the family are all in agreement, which makes things so much easier.

Major task at the moment is getting MIL to agree to making an LPA. She wasn't having any of it when we brought it up in the past, but we're hoping to capitalise on her agreeing-with-everything mood at the moment.

 

[Tatiana]

When FiL was in hospital for 2 months after breaking his hip, he had quite spectacular delusions. And hallucinations. Looking back I believe the alien environment coupled with; pain from broken hip/UTI and then, to cap it all, a chest infection, triggered this very sudden decline. He did get better and whilst he still comes out with totally untrue statements, they are not as 'off the wall' as before.

We were very, very lucky with getting agreement for POA for both inlaws for financial and also health/welfare. Things came to a head when FiL panicked as he hadn't filled in his tax return (he has used an accountant for years, but had forgotten) and also, needed to swap his savings account for a better rate of interest (couldn't remember where his money was). Then, he had the bad fall and was hospitalised. And finally realising that his wife was unable to cope or make decisions on her own and if he'd died (he might have done if he'd lain on the cold ground any longer) she'd have been vulnerable and confused. I hate to say it, but I'm guessing a real crisis has to loom before some relatives realise that they need help, be it a POA in place or even moving into care. I hope it doesn't come to that for you. Sending good thoughts.

 

[Izzy]

Hi Chemmy. Nice but sad to see you back. x

 

[stanleypj]

I second Izzy's post.

Some people's posts are always worth a read and TP has been the poorer since you left, though the reason for your return is a sad one.

 

[Chemmy]

Thanks Tatiana. That'd make sense if it's a reaction to the stay in hospital. I hope it is.

...and hello and thanks again for your kind words, Izzy and Stanley. I have been reading posts in the interim, just didn't feel in a position to contribute.

It's strange being in a different role this time round ie the DIL who lives 200 mls away, so actually it's not my responsibility. I'm also having to defer to my husband and his sisters, rather than just making all the decisions as my mother's only child and I confess I'm finding it quite difficult to know when to button my lip Planning ahead was my way of coping, I suppose, whereas they seem to favour a shorter term approach.

 

[Chemmy]

Well, here we are, a week on, with MIL shortly due to be discharged from hospital with a full 4x a day care package.

I've read enough on TP to understand that's not without its problems, but it's certainly worth a try.

The delusions appear to have stopped and, visiting yesterday, it's very hard to believe the VaD diagnosis. Her memory seems fine but there's no doubt her behaviour over the last few weeks was becoming very strange. She clearly wasn't eating or drinking, coping with laundry, etc and when we went round to her house, it was in such a mess, it looked as though she had been burgled!

I'm wondering if it's a case of having all responsibility taken away in hospital - food prepared, help with washing, constant company, etc - that's making her appear relatively normal again...and of course there's now the inevitable wanting to go home.

I'm reminded of Isabella's story about her mum - the cycle of going into respite where she improved hugely because of 24 hr care - and then being sent home to only to spiral downhill again.

I guess we'll just have to wait and see how it pans out.

 

[Canadian Joanne]

Chemmy, glad to see you back, but sad for the reason.

I had to smile when I read this:

It's strange being in a different role this time round ie the DIL who lives 200 mls away, so actually it's not my responsibility. I'm also having to defer to my husband and his sisters, rather than just making all the decisions as my mother's only child and I confess I'm finding it quite difficult to know when to button my lip

Emphasis mine - I quite agree . I have rather a take-charge personality myself and think things would run so much more smoothly if everyone just obeyed!

My mother had hallucinations when she was early stages of AD so I think that hallucinations can be part of dementia period, regardless of which disease it is. I hope things work out for you. Keep us posted.

 

[Chemmy]

Hello again Joanne,

In MIL's case it was a fall before bedtime, and with no alarm, she was lying there for 16 hours or so., wondering if she'd broken her back. Its been an absolutely horrible experience for her. Anyone reading this with any vulnerable relative living on their own, dementia or not.....insist on a personal alarm system. I've been taking a neighbour to the fracture clinic (she slipped on a bath mat) and you'd be amazed at the silly ways people have broken bones.

However, Re MIL, I know I must sit back until asked for my opinion/advice. Easier said than done.

 

[KazzyF]

I would be quick with the LPA if I were you. My mum refused and I am struggling to get Court of Protection.


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[KazzyF]

Hi chemmy. Another thought. My mum often gives of an air of doing really well BUT I am convinced that is down to all the support in the care home.


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[Chemmy]

Hi Kazzy

The hospital social worker has convinced MIL of the need to make the LPA so the forms are with the doctors for them to certify she's OK to sign, so hopefully that is now resolved

However, I think you may well be right about the current level of support giving a false impression. MIL has sat in the hospital for the last two weeks, being helped to wash, choosing off the menu ("lovely food") and waiting for her next visitor. She's eating properly for the first time in months and is clearly unstressed.

She goes home tomorrow afternoon and I wouldn't be at all surprised that when she has a reality check, it may well cause a setback. Carers letting themselves in to her house would have been an absolute anathema to her a month ago - it's hard to believe that she'll just meekly accept all the changes.

Who knows, maybe I'm just being a worrywart. Don't tell the rest of my family, but I'm already formulating Plan B.....

 

[KazzyF]

Well done getting the POA. Wish I had been a bit more canny about that one. The occ pension for me has gone really quiet. Worried that it's still not sorted!
Oh well


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[Owly]

Is there family who are close enough to pop in frequently, check the post and especially any bills?

Anyone who can also be added to the bank account as "third party for administration purposes" (that is quicker than waiting for the LPA to be registered)?

Even if all the bills are put onto direct debit (advisable!) you need someone to check the bank balance so that when a bill goes through you are not in overdraft.

These are the most immediate things that I had to organise once we realised that my Mum had developed her memory problems.

I'm sorry you're on "take 2" of the same difficult story. I say to hubby sometimes, "I hope we don't go through anything like this with your Mum next".

 

[Chemmy]

The ironic thing with us is that as soon as my dad died, I got my mum to make an EPA which proved invaluable over the subsequent ten years. My husband sorted out all the finances for her, so he knew first-hand how essential it was.

However, when I suggested some years later that maybe his mum should make an LPA in case she had another stroke, he talked to her about it, but she decided against it and neither he nor my SILs were subsequently inclined to pursue it. I rather suspect "no dementia in our side of the family" and "don't want to hurt her feelings" were the reasons, but that all changed last week and there's now been a panic to get it done.

I know it's hard to discuss infirmity and future care needs with elderly parents but it really needs to be done. I kept my two children fully in the loop re my mum's long battle with Alzheimers and now I'm making sure they know the issues with their other grandmother. I told them again just last week that I expect them to raise difficult subjects with me in the future if necessary and that I expect them to point out that I'm no longer coping, even if it makes me cross.

Giving them 'permission' seems to me the best way to alleviate them from feeling guilty over any difficult decisions or conversations they may need to make in the future.

 

[Chemmy]

H'mmm. MIL was discharged from hospital on Friday and although the care plan seems to be working so far, it appears her agree-with-everything attitude was simply a ruse to get home, where she seems to be reverting back into her old ways - becoming increasingly irritable and again denying she needs extra help with laundry etc.

It'll be interesting to see how it all pans out over the next few weeks.

 

[KazzyF]

Sad isn't it. They are so determined to remain independent, when actually they can't really manage at all. Does she have a social worker who could pop in and assess the need while she is at home? Maybe the advice would then be to find a Care Home?

I also (off the top of my head) wondered if she could afford a cleaner who would do some laundry? Sometimes you can find little angels waiting in the wings. Someone who would keep an eye out at the same time as cleaning etc?

Unfortunately my Mum was in this pretending stage before she had her last stroke, her house was filthy but I was not too aware of it until I started to clean myself when she was in hospital as she would skim off the worst of it. She was determined she could manage though and still is - even though she cannot for example "work" the taps to wash up.



Keep plodding on - it is all we can do
K