Does anyone have any advice

[Lula]

Hi all,

 

My uncle who is 60 and has Downs Syndrome is now showing all the signs of having Alzheimers Disease, now whilst this is pretty rare in Downs Syndrom people I gather it is not unheard of. My mother (who is disabled) looks after John at home, the centre that he attends know of this and are aware that he is to be kept an "eye on" and never allowed out on his own.

 

To be honest, it is quite a rare event in itself for someone to reach 60 with DS and for the last year or so he has started to look very old and has started to get the pallor of an old person if you know what I mean, I saw the same in my grandmother before she died, I have told my mum that he may not be around much longer, and she agreed with me. He seems to have lost interest in most of his hobbies and just does his crocheting and watching DVD's.

 

Does anyone know of any organisation that could possibly advise on his care (in the home, he is NOT going into a home, that would just distress him far more than he gets at the moment).

 

Many thanks

[Lula]

Well, after doing a bit of research, it seems Alzheimers ISNT that uncommon, but the fact that John is already 60 and now seems to be showing signs is a bit unusual lol

[Cymraeg]

I know of one family that has a daughter with Downs and Mencap has helped them a lot. Perhaps you could find the local one to you and have a chat with them.

[bazak1]

lula, try http://alzheimers.org.uk

my step father had it later in his life and that alone is terrible enough. but with everything else you speak of, i feel sorry for all of you.

hope the link helps.

[bazak1]

hi lula, did you get any help sorted for your uncle ?

[Lula]

Hi Bazak, not as yet, my mum is still in a sort of denial, she says that she has taken him to the doctor who hasnt done any tests but who says that given his age and condition, if he has got it then it will be dealt with as it comes, Actually, this is ok, because my brother is nearby, and I am half an hour away and should anything untoward happen, it wouldnt be long till one of us could get there.

 

The centre that he attends have been spoken to as has his link worker, so everyone who needs to be aware of this is.

 

I have said to my mother, if his condition starts to deteriorate, she MUST get help, because she is disabled and cannot do too much for herself, he has a carer come in on weekdays to help him bath, so at the moment he is good, he is not allowed anywhere off the premises at the centre, or outside at home. To be honest, thats really all that needs doing for him at the moment.

 

But I have that url and should his condition deteriorate, as it invariably will, I will be onto them and asking for their advice and help.

 

Many thanks for your help and support Baz, it is much appreciated

[bazak1]

hi Lula,

i'm glad things are ok at the moment.

It's a lot to deal with, but with help from friends and family, you manage to get through from day to day. Any time you feel like a chat, or need any help, just give us a shout. only too happy to help if i can.

Take care

 

Baz

[Lula]

cheers Baz, again, much appreciated

[lizzie51]

Hi Lula.

One thing your mother might consider is to enrol on a course run by the Expert Patient Programme called 'looking after me'. It's a self-management programme for people with a long-term condition who are also carers. Its worth seeing whether there is one nearby. It really is an excellent source of support, help and advice if you can find one locally. Have a look at their website: myWorkPlace Expert Patients Programme and go to 'contact us' to find your nearest contact.

[hepburn07]

Hi Lula,

 

You say the GP hasn't done any tests ... it's probably a good idea to at least get your uncle's thyroid levels checked and his hearing tested again. Problems in both these areas are really common in people with Down Syndrome and can give symptoms similar to dementia. Both can be relatively easy to remedy and make a big difference to quality of life.

 

Saying that, if he is developing dementia it's worth rattling the cage of your local Learning Disability Health Team now, rather than wait for further signs of deterioration. That health team should at least have a physio, occupational therapist, speech therapist, psychologist, specialist nurse, that type of thing. They can all contribute to both making a diagnosis of dementia, and recommending support strategies for when skills start to deteriorate. ( Hertfordshire Partnership NHS Trust : Specialist Learning Disability and Forensic Services )

 

In my experience, I wouldn't leave it all to the GP,a lot need support just to understand the basics of dealing with people with complex learning disability.

 

Good luck

[hepburn07]

and if you need local carers support for your mum, these might help: Carers' Rights

(PS, I'm only guessing with the Herts links, but if your mum is outside Herts, then there should be the same sort of organisations where-ever she is)