alzheimer questions

spaghetti_monster

Hi,
hope it's ok to ask a few questions here, see if anyone has any experience - I guess this is the board I visit most and it is a family issue...

My poor Dad is finally in a secure hospital being assessed for his Alzheimer's. He was being cared for 24/7 by my Mum, but it just wasn't possible any more (violence/aggression). Since being in the hospital he's deteriorated further and is now definitely in the end-stage of the disease.

I'm really wondering what will happen next and wonder if anyone has any experience? (Not regarding the Alzheimer's - I know that's unpredictable how long/how bad/etc), but more what kind of homes/care he will eventually end up in. It's now clear that he can't go back home.

In hospital he's developed severe problems with eating and has lost a lot of weight. They say that before they let him go they have to build a bit of strength back up as he's quite weak. They also wanted us to sign a do-not-resuscitate order, which we've done.

As a family we haven't done much research into homes in the area yet, I don't know anything about the subject. I imagine he will be too much for a normal nursing home. He was put in respite once for one week and although they said they were specialised in dementia they couldn't cope with him. I somehow don't know where to start with looking for somewhere....maybe we don't choose and the hospital or a department of social services find somewhere??

About moneysaving.... I think we're pretty much ok as we got some good advice. We were told that power-of-attourney was not-relevant and too time consuming/expensive in our case. Mum and Dad have no significant savings (only a few thousand, and all in Mum's name). Their main asset (house) has been split and wills have been sorted out.
Mum was getting attendance allowance, but immediately called to stop this when Dad went to hospital.
If anyone knows anything else to watch out for......

Pollycat

Have you had any contact with your local Adult Social Services?

Ours have been really good (not in exact same circumstances, Dad has dementia but is non-violent) and they have done assessments on the flat (together with our local non-emergency) hospital and set up a budget for care.

We have had very recent dicussions about Dad's condition and they have mentioned a care home that does care for dementia.
Not sure how you would go on if the repite home couldn't cope with him and that was supposedly specialised in dementia.

You county council website should have a list of care home and what type of patients they will take.
Ours even has a list of vacancies.

This website has a lot of factsheets there's one on finding a care home:
http://www.counselandcare.org.uk/finding-and-paying-for-a-care-home

Although you say you've had good advice, you do mention a property so it might be worth looking through 'Care Home Fees - paying them in (wherever you live) just to be sure.

Good luck.

building_with_lego

A relative of mine suffers from this awful condition and cannot even recognise her own children any more. When Contented Dementia came out I read it and found it a useful introduction and insight into dementia, certainly a nicer approach than medication. I wish you all the best for the future.

spaghetti_monster

Thanks pollycat - I'll look into all those things now and see what it says for our area.
I was also puzzled by the care home that couldn't cope with him. He definitely has the full range of challenging behaviour - but nothing that isn't normal for dementia.

BWL - I also got this book a while back and found it a great read for trying to understand some aspects of dementia. Some people do not agree with one of its main principles - that you should go along with what the person says/experiences - but for my Dad this was essential as he's one of those that always denied anything was wrong with him and gets very upset/agitated/aggressive if you tell him he's wrong/needs help/etc

spaghetti_monster

Also pollycat, forgot to say that Mum and Dad have had the full financial assessment by social services. Mum said she had to fill in an enormous amount of forms with all their financial details and SS are fully aware of their situation.

onlyroz

spaghetti_monster wrote: »

but for my Dad this was essential as he's one of those that always denied anything was wrong with him and gets very upset/agitated/aggressive if you tell him he's wrong/needs help/etc

I've read this - in particular when it comes to forgetting that somebody has died. E.g. if they say "Where's John?" and in fact John died years ago, you should reply "He's gone out for a bit, we'll see him later". And then by the time "later" has come, he's forgotten all about it. Just reminding somebody of their losses or incorrect memories will just upset them further.

building_with_lego

That's the whole point, isn't it? To keep the sufferer contented and calm and not confused. The way the book described it made it really easy to understand. I passed it onto my relative's hubby after I read it and he found it useful too; I don't think they implemented any of the strategies but he understood her behaviour more.
I hesitate to add this- let me know if you'd like me to remove it. Her husband died recently and she is 'blissfully unaware' that he's gone. That's the silver lining to the horrible horrible illness.

Pollycat

spaghetti_monster wrote: »

Also pollycat, forgot to say that Mum and Dad have had the full financial assessment by social services. Mum said she had to fill in an enormous amount of forms with all their financial details and SS are fully aware of their situation.

It sounds like you're sorted (at least financially).

I must admit that I skipped over the 'owned property' bits as Mum & Dad are in warden-controlled pensioner accommodation so it didn't apply.

We're not at the financial assessment stage yet but I'm aware that it will be coming.
I look after all their finances so I'll be sorting that out for Mum. :huh:

spaghetti_monster

building_with_lego wrote: »

That's the whole point, isn't it? To keep the sufferer contented and calm and not confused. The way the book described it made it really easy to understand. I passed it onto my relative's hubby after I read it and he found it useful too; I don't think they implemented any of the strategies but he understood her behaviour more.
I hesitate to add this- let me know if you'd like me to remove it. Her husband died recently and she is 'blissfully unaware' that he's gone. That's the silver lining to the horrible horrible illness.

Yes, for my Dad too there have been other losses in the family which he's been unaware of. It is the silver lining in a way - but he's also not emotionally connected to any of the good things that have happened.

Another good thing in that book was about dementia sufferers emotions - that although concrete memories/facts will be missing they can still feel and experience emotions. For example if you tell them they forgot something/are wrong they can then feel confused/angry/upset/distressed and this feeling will stay with them for a while. If instead you tell a white lie or make up a little story, they might then feel satisfied/happy that things are OK - and this more contented feeling stays with them instead.

Pollycat

We find that even innocuous questions, like asking Dad what he had for lunch at a Day Care centre he goes to, can cause him upset if he can't remember.

So if we see he's struggling, we just say, "I bet it was chicken, Dad" and he'll agree and be happy that 'he's remembered'.

katsclaws

Hello spaghetti monster. Please go to the Alzheimer's Society website. There are lots of factsheets and also a fantastic forum called Talking Point. You will find lots of help and support there.

katsclaws