My mum isn't ill enough to go in a care home

[pescy]

Hello everyone,
Can anyone help? My mum is 63 and has had Alzheimer's for about eight years now and has lived at home with her partner. Over the last year or so she has needed carers to come to the house and help get her dressed and washed in the morning, and look after her during the day as she wanders a lot. She isn't incontinent and can tell you by expression and body movement that she needs the loo. She needs encouragement to eat and drink (she can't cook or make drinks for herself), but can mostly let you know what she likes and dislikes. She has responded well to the sitting service we have put in place, and seems happier and can converse slightly better because of this.
My problem is; Mum's partner has decided to leave. Mum cannot be left by herself, so she needs 24 hour care. She really isn't ready for a care home- i took her to visit one the other day ( i wanted to see if i could find a home that might be suitable as i was really worried social services might take control and just stick her in anywhere) and she was really upset and could tell that something wasn't right. I know her condition would worsen if she went into a home. Even a trip to my house for a couple of nights, she finds confusing, and will get out of bed up to five times a night, whereas at her home she gets up once to go the toilet. Does anyone know of someone with Alzheimer's who has been funded by the government to be allowed to stay at home, for the good of their health? Mum has direct payments already from 8am to 4.30pm. Surely there must be some way of keeping her at home? I could have my Mum once a week to stay the night (i am married with two young children, otherwise i would have her more). She really benefits from one on one attention and loves going out and looking around the shops and buying things; i know she wouldn't receive this kind of attention in a care home.
Would really appreciate any ideas.....

 

[Helen33]

Hello Pescy

I don't know whether this will help at all Pescy but I did apply for in-house respite and was awarded it because it would be detrimental to my husband's health to have to be placed in a care home. I think this was approved because I was able to state very clearly why my husband needed to remain in his current environment which is a place where successful management of his difficulties is taking place without having to resort to medication. If my husband was placed in a care home environment he would have to be placed on medication which could jeopardise the abilities that he has. I always felt it would be an easier case to win if people actually met me and my husband. I would show them the photographs of what Alan is able to do, and enjoys doing, and they would experience the good quality of life that he enjoys at home without having to resort to medication. I feel that presenting Alan in this way allows others to see him as a whole person rather than just focusing on the problems.

This is my limited experience which may or may not help.

I feel your mother is going to experience a great change when her partner leaves (if it hasn't happened already). I am wondering whether it would be timely to get in touch with the Social Worker and discuss how the effects of this change in your mother's circumstances can be monitored and managed, particularly the times when she will be alone!!

Wishing you well and I hope that you get the information and support that you require at this time.

Love

 

[Grommit]

Not sure if this will help but I wonder if you have the opportunity of extending the Direct Payments to cover some help during the night time?

Maybe the Social Worker can assist in getting the ball rolling for you.

 

[pescy]

Thank you Helen, you have given me a little hope that it might be possible for Mum to stay at home. I am seeing the social worker tomorrow, one of Mum's carers will be there too to help support the idea of Mum being too able to go into care. Thank you Grommit, hopefully the social worker tomorrow will let me know if she can extend the direct payments- i believe though, i will have a big fight on my hands!

 

[Sandy]

Hi pescy,

You might try ringing the Alzheimer's Society's Helpline:

http://www.alzheimers.org.uk/helpline

Having been reading posts on TP for some time, I have to say that cases where 24/7 care has been fully funded are very, very rare.

The most famous case is that of Barbara Pointon who was able to get NHS Continuing Health Care to be able to care for her husband at home. This article is a bit old, but gives you some idea:

http://www.alzheimers.org.uk/site/scripts/press_article.php?articleID=4

Has your mother ever been assessed for NHS CC?

Everyone approaches these situations differently, but may I just suggest that you not close the door on a care home just yet? Even though your mother had a negative reaction to a visit to a care home, that doesn't necessarily mean that she wouldn't settle and be happy in the right home, given a bit of time.

To get a bit better idea of your situation, I read over your old posts. Do you still live an hour away from your mum? If so, then you might want to find a really good home close to where you live and then you and your family could see her as often as you liked.

Take care,

 

[katherine]

Hi there
You sound like you are in exactly the same situation i was in a few years ago. And yes - you can get more help. We put up a fight for it but we get 24 hour care for my mum at home funded by Direct Payments and also the Independent Living Fund. (the other option is NHS continuing care funding)
My mum is still at home now as to date we have never quite felt that she should be in a nursing home (although are wavering a bit now). I'll try to send you a private message with my telephone number and you can give me a bell if you like to talk it over.

But yes - it is possible.

All the best

Kate