• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

younger people and respite

chip

Registered User
Jul 19, 2005
400
Scotland
Hi All,
I have just been to see out local member of parlament but he was one holiday and got two representations. I tried to get respite as i have to go away for a week. It all fell through nursing homes won't take my husband due to him being too young therefore they would need more staff as he can walk! All nursing homes are for elderly and don't cater for younger people. I got offered 2 places after that one is where i wouldn't put an animal the other is hospital and he doesn't need hospital. As i have to go my Dad is taking him as there is no where for him to go and he is 78. My Dad is also in agreement about not sending him to the only places available. and also been told by a lot they are glad he is not going to these places
The early onset group here have been campaining for 10years to get better respite places for younger people to go but get no where. I have been told that carers here don't take respite due to the conditions.
My husband got santioned on my first respite why because he was frighened he said to our support worker they are all mad in here. He still has awareness. The two representers were shocked and are passing it on to the member of parlament To hear from him next week.
I aim to change things for young people with Dementia in my area. Its bad that i have to do this and care as well. What happened to the take good care of yourselve government carers advice?
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Hi chip, know where you are coming from on this one. It is not just in your area that there is a problem.

Younger people (i.e. under 65) are just not catered for. Even when the care homes get special registration for under 65, the facilities do not match up.

Of course young people do not want to sit around in circles with little stimulation. Just do not know how we can change the situation. I got our MP involved last year, but there is no progress in our immediate area.

Good luck, thinking of you,
 

Kayla

Registered User
May 14, 2006
621
Kent
Dear Chip,
Have you thought of contacting the local newspaper? They are often looking for something to campaign about. Our local paper actually has a section devoted to disabled people and their clubs and activities.
A lot of elderly people can walk quite well so I don't see why that should prevent your husband receiving respite care, especially if it is only needed for a week. Also, homes have to provide individual rooms for people, so they can be on their own if they want to, and most residents spend a lot of time by themselves watching television.
Kayla
 

chip

Registered User
Jul 19, 2005
400
Scotland
Thanks all, i hope the MSP contacts me next week. Had the Day hospital on the phone today and they said it's what is needed and a very good idea. The day hospital is also for elderly. So i will do what i can to get funding for it. In my eye it takes away beds in the hospital, carers get a break, carers are happy and the sufferer wants to go and i hope its more like a holiday to them. I am also an EMT so hope that puts a bit of pressure on. Will keep you all informed how i am getting on.
My husband has just had a good day with the early onset went on a picnic then on a boat they all loved it. Makes a difference not being left and locked up.
If i am sucessful hope you can all push for it
 

wendy43uk

Registered User
Dec 22, 2005
64
sheffield
young people

i find it the same john allways stands out like sore thum what about the lottery would they help us has any body ever asked
 

chip

Registered User
Jul 19, 2005
400
Scotland
Good idea going to the lottery as well. I will contact the early onset on Monday and put it to them. I phoned up a carers council today and was adviced to contact the Mental Health Welfare Commision i'm going to get my advarcarcy to do it as she is saying its bad here. There has to be a equal to this in England, Ireland and Wales.
 

wendy43uk

Registered User
Dec 22, 2005
64
sheffield
restbite

why not ask a home to do rest bite for the young if we only had one i am sure it would be full the company i work for keep buyng homes that are struggling reagle homes thire number is on the net they might be intrested if the socitey will back them
 

bel

Registered User
Apr 26, 2006
757
coventry
Respiite

Dear Chip
my husband has dementia age 59
i read a weekly magazine called YOURS they often campaign for things like this in last weeks issue are campaigning for carers allowance not to be stopped when they reach retierment age i could give you adress if of any use
Love Bel x
 

chip

Registered User
Jul 19, 2005
400
Scotland
An update on respite my MSP is taking it to the scottish exec to see what can be done so fingers crossed and toes. Hope its soon i'm exhausted.
 

dmc

Registered User
Mar 13, 2006
1,157
hi chip

just wanted to wish you luck with your campaign,
my mum is a young 65 and to see her in a ward with people 20 years her senior is upsetting becouse i know it frightens her, but as weve been told (im in wales) there is no facilities available for people my mums age and younger.
so far she's been put in a intensive care psyciatric unit for teenagers or she's been in wards were there are very elderly people, there is no inbetween,
look forward to hearing your progress
best of luck
 

chip

Registered User
Jul 19, 2005
400
Scotland
Will keep you updated when i get more information. Perhaps you should also try you have a word with your member of parliment. If we all done it, it would make an awareness to the fact it can happen to younger people. My mum was 60 and now my husband who is now 53 and was 49 when it started.
I have had backing as well so i will just have to hold on until the parliment resumes.
I also think it is bad that agencies charge a weeks wage for one day care, yet we only get £46 they are taking advantage of the situation. Does anyone else think this?