No respite again too young

[chip]

Hi All,
Feeling low have big problems its a constant battle. Went to see a NH today with SW told only one and they only had one bed for respite. Again all were elderly that was just the start of it. We were talking at the end of the tour when a woman came up (i take the manager) and said "how old is he" 53 was replied oh we can't take him he is TOO YOUNG we can only take over 65's so there is no-where for respite even in nursing homes for the elderly for younger people. When oh when is this country going to get care sorted out before all carers get ill. I've been advised to go to the Advice Shop. Surely this is discrimination against young people with Dementia and Carers. Carers who are saving the Government. Whey was this not checked out before i went? What ever is this country coming to? Who cares about us? Do i take it to a lawyer against the Council and NHS for not providing proper care and going against age?
A sick fed up Chip

 

[dmc]

hello chip

i know some of your rules in scotland are different to the rest of uk, but my mum (she's just 66) is in a emi hospital and i know for a fact that there is a man there in his 50's they are not in the majority though my mum is the youngest lady there there dosent seem to be a place for the younger patients to go my mum has either been with teenagers on suicide watch in a psychiatric unit or with the very elderly, there just isnt anywhere they can be put
you do have my sympathies
take care x

 

[TinaT]

Alzheimers And Under 65 Age Group

I live in England so Scottish rules do not apply to my husband and myself. I recently broke a wrist so badly that I was rushed into hospital for an operation and a stay of one week. Husband was taken over by a Hospital Social worker. The Social worker was excellent, such a kind and careing person. It took him hours to pursuade a local authority respite home to take my husband as he is aged 64 and legally(in my area at least) they are not licenced to take under aged 65. He could not go to a younger care home as he needed a secure unit with carers who knew how to cope with alzheimer's disease. Eventually the social worker found one which agreed to take husband on a temporary day to day basis
but they stressed that they were not licenced for under 65 year olds.
I was still unable to use my arm and wrist when I came home but the respite home insisted that he could not stay with them any longer. I then got another social worker taking over our case. She had exactly the same problem. Our local authority have a team of carers who come into a person's home for six weeks to wash,dress/wash undress. They were not allowed to come as husband again had not reached the age of 65. Social worker then tried to arrange an agency care team. They never materialised. Thanks be to God, the supervisor of the local authority care team visited me, took pity on me and insisted that her team came in to help. Of course under the circumstances as soon as I was able to I let them go, even though I really did need them to help me. I carried on in pain looking after husband myself. I was very grateful for jogging pants and 'pull up' incontinence pads as I couldn't manage zips and buttons.
I was so angry at this lack of care for the under 65 age group that I found all the e mail addresses of the M.P's in my town and e mailed them a strongly worded message on the subject. Don't know if this helps anyone but this is my experience of having a 'younger' alzhimer sufferer husband.

ps Final insult came when I had to pay what to me was a large amount of money
when I got the bill from the local authority for his respite care.

 

[bel]

too youg

dear chip
my hubby is 55 and i am finding the same too young my problem is re finances --could get more if he was 65 SO SHOULD WE ALL APPOLOGISE FOR OUR LOVED ONES HAVING DEMENTIA TOO EARLY when will they wake up
love Bel x

 

[MrsP]

Hi to all. I work for the NHS and have seen this problem across many areas of the health service; young people with other disabilities have nowhere to go either. Does anyone out there know a lottery winner who could open a ground breaking new centre for the 18 -65 year olds out there, 'cos I'm sure there's a massive need for it.

 

[wendy43uk]

resbite

hi i was told about famly placement were a person is assesed on merit not age for restbite within a famly bit like fostering this can be like daycare for the day or 2 weeks with the famly placemeant ask the socalworker let us know what he says

 

[connie]

Dear chip, even self funding as we are it is difficult to find places for under 65.
Those beds that are available are usually in a home, where maybe nearly everyone else is elderly (no offense here, but needs are vastly different).

I fould a new home last year, fine, managed 3 lots of respite, expensive, but worth it) That home is now so full, they cannot offer any planned respite.

Lionel is having respite in another new home, only opened in September, so I have booked some more for January 07. After that they could be full.

Hey ho........so the search goes on.

 

[chip]

care/ respite

I phoned up the help line today and they are taking it to National Headquarters perhaps its an idea for us all to do this.
Social Worker is now telling me that when we get the independant living fund that it can be used to buy respite. Its obvious to me that it is cost involved and i am getting hit. Is a Social Worker supposed to tell you what to do with the money you receive for care? I thought it was for you to manage to get care in.

A very angry, upset, down Chip

 

[alfjess]

Hi Chip
I don't know where in Scotland you live, but have you looked at www.carehome.co.uk. I understand that SS can send clients outside of their own area for respite, but prefer to use the facilities within their own county.
I have recently been to visit a complex at Lesmahagow in South Lanarkshire. My parents are booked for respite. It is lovely. Admittedly, the majority of the people I saw were elderly, but while having a coffee in the Courtyard Cafe, which is part of the complex, I noticed a few, not so elderly and obviously patients.
I don't know if it is OK to give you the name of the Trust here, but if you want PM me, I will give you details
Alfjess

 

[chip]

Thanks have sent you a PM have checked the site but as per normal its age problem again.

 

[TinaT]

A footnote

Just got a letter back from my M.P enclosing a copy letter from the Director of Social Services for my area. If you see my reply to this thread entitled 'Alzheimers And Under 65 Age Group' it will put you in the picture.

The director is investigating and will get back to my MP within fourteen days. I invite anyone having problems related to the age of the Alzheimer sufferer you are caring for, to contact your local MP and make a fuss! Maybe it will pay off and help others not to have the same problem. Will post with the next reply I get.