alzheimer questions

Savvy_Sue

sheila, will your brother be able to live alone? Have you asked for him to have his own assessment, either as a carer or as someone needing care?

I_know_my_ABC_and_my_CMYK

My mother was exactly the same as your father, aggressive, lost allot of weight, difficult to manage etc.

She went into hospital for assessment and she deteriorated rapidly, It's taking them out of a familiar surrounding that makes them slide down.

You may find that your father will go into a special secure unit that deals with very bad cases of Alzheimer patients, my mother did. These are usually NHS so don't cost anything and are attached to the main hospital.

My mother was so difficult that the nurses had a rule of no more than 15 mins at a time with her as she was exhausting. She couldn't be left on her own at all.

These special units do all sorts of thereapy with them, not just physical but mental as well. They try to jog memories they have to try to keep them alert a bit longer.

The unit my mother went into was amazing, they really are special people that nurse this condition day after day.

I have no idea how long your father has had this terrible disease but for my mother it was exactly 5 years from showing the start of this to her passing, which was quite a relief.

She knew my father but but no one else. We asked her one day how old she was and she said 17, she was 67, she married my dad when she was 17. She had actually gone back to that point.

sheilavw

H Savy Sue...My brother will live with my Sister. We could cope with Mum if she could stay in, its the constant in and out and last week going miles away, we were 5 hours before she was located. We will see what this week brings. David does have a Social Worker but he never met him, he assesed him over the phone? he has now moved team and someone else has been asigned to him but not met her either

Pollycat

Sheila
I hope the assessment on Wednesday goes well and that your Mum finally gets the care she obviously needs.
Let us know how it goes.

Re your brother - I don't really know much about Social Services and Down's Syndrome but it doesn't seem right that he's never had a proper assessment.

sheilavw

Hi he only got assesed after hospital stay. He was in intensive care jan/feb on life support and they said they would contact his social worker when he was going home. I said he didnt have one and they said of course he will, but he had reached 44 years and hadnt ever been allocated one. Mum has been given 28 vouchers which gives us some respite if they have short term vacancies. The home is brand new and is like a hotel, and we will have to tell her thats what it is!

sheilavw

Hi just to update we have got mum in monday for 2 weeks at the lovely home we looked at the other week. It specialises in dementia, its beautiful just like a 5 star hotel and has a lovely coffee bar and hair salon, they have loads of activities, in fact the organist who does the sing a long used to play up the club my mum and brother go to. My Sister is really nervous as am I , but its for the best. She was seen going out at 2,30am in the morning by a neighbour, when asked she said she was going home, they followed her at a discreet distance and she went to a house about half a mile away where she lived over 25 years ago. A neighbour of my sisters has seen her coming back from church at 5.30am, we just cant keep her in. We are going to say that she is having some work done at her home. Due to me working we are taking her about 4.45, they didnt want it any later, need to settle her and have tea etc

Pollycat

Sheila
is this going to be a permanent move for your Mum or just temporary respite?

I'm sure you'll already have thought about it but do take some photos and other 'knick-knacks', maybe even a throw she uses on her chair that will make it seem more like home to her.

I hope she settles OK.

I posted not many weeks ago about by Dad who has dementia and Mum was struggling to cope.
Things have moved very fast for us.
After a recent fall and a hospital stay it was decided that he couldn't come home and so was discharged straight into the Care Home (that caters for dementia sufferers) that we'd looked round a week or so ago.

He seems to have settled in well but we're not sure if he understands that it's a permanent move for him.

We're now waiting for a financial assessment by the council so we know how much we'll need to contribute to the fees.

I'll be glad when it's done as it's a big financial worry for Mum because most of the household income was Dad's.

At least we know that Dad is in a place where he'll get the care he needs and that Mum isn't being run ragged trying to care for him.

sheilavw

Hi Pollycat , temporary with a view to permanent I think. We havent been assesed yet for permanent, we only have the 28 day vouchers. Im staying with David monday and my middle brother rest of the week. Dont want him to be on his own in the house, we havent told either of them yet. She went to an occupational group thursday from memory clinic they picked her up and took her home, but she has no memory of it. I asked her if been out and she said hadnt. She does remember selective things, remembered my youngest daughter passed her driving test last monday. We are trying not to think about it too much until monday. I am taking them both to a show my daughter is in tomorrow then bingo at local club tomorrow night. I have a feeling she wont like it but hope will adap. Good Luck with your Dad, glad he is settling.

BungleGirl

I have only scanned through this thread but just wanted to add my experience. My mum has early onset Alzheimer's (diagnosed at 50 but it was obvious to us several years before but doctors refused to listen to us despite the fact that her sister and father had exactly the same thing!). Mum was very lucky and social services places her in a Barchester home (very much like a 5* hotel, in fact we told her that she was going to stay at a hotel) and was in a special secure section of the home.

Mum deteriorated rapidly when she was first sectioned and taken to a secure psychiatric unit and then again when she was moved to the home. The positive side of this was that the period of her 'knowing what was happening to her' (a terrible time for us as she was so upset - no matter what age you are it is horrible seeing your mum crying and very scared!). Mum became bed bound very quickly and we were lucky that she was then moved to a different 'wing' that was used for respite and end of life care - it is a much quieter and more relaxed environment.

Mum was sectioned on new years eve 2004 and moved into the home in the February - she deteriorated rapidly and I guess 1 year later she was bed bound, could not communicate and could do nothing for herself. The NHS continuing care funding was not granted until 2009 and the fact that she started suffering with bed sores was the defining factor (how ridiculous is that?!).

One thing to consider in choosing a home is how YOU will feel being there, the place where mum is has a conservatory/atrium in the middle with cakes and a posh coffee machine (sorry if this is sounding very me, me, ME!) and this really helped my sister and I as when we visited mum (especially at the start) and it all got a bit too much, we had somewhere to go to for a little while to pull ourselves together before going back to see mum. I'm sure this sounds stupid, but it really helped, we still go there if we get a little upset.

Also, download the Alzheimer's Society 'This Is Me' leaflet http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=1290 and complete it in case your loved one has to be transfered to hospital for any reason (also helpful for new carers etc.) as mum has been hospitalised twice and both times it has been a nightmare, including last time when they didn't have a clue what to feed her and I had to drive to the home and ask for some of the things that they feed her so that I could take it back to the hospital to feed her!

BungleGirl

I've just realised that my post above may seem quite hard hearted and without feeling. It's just that this has been part of my life for so long and I think I have switched off my emotions a bit - otherwise I think that I would be a mess all of the time!