minky

[minky]

hello i have just joined talking point my sister who has downesyndrome has now got dementia.as you can imagine its hard enough to care for someone with learning difficulties without the added worry of dementia.sandra lives with my hubby and me she has done for 16 years i just know nothing about the condition we have been told she has it and thats it! we have heard nothing since.where do i go next who do i see, there are so many questions that i need to ask but who to? i have noticed subtle changes in sandras behaviour and when you say it to someone it doesnt seem a problem but it is as there are lots of different things going on. like not knowing why she is in the bathroom or not knowing that she has a cathetre bag that she wears on her leg and has to empty regularly she has had this bag on now for at least 6 years but she cant see it. when i tell her to empty it she looks at me as though im mad! as she cant see it.

 

[Linda Mc]

Hi Minky and welcome.

Have a look at the fact sheets on the homepage they may help you.

I have no experience of dementia with downs syndrome but many here have and will come along soon to help with your questions.

Linda

 

[Vonny]

Dear Minky, was it your GP who diagnosed dementia? You shoudln't have just been sent away without being told where to go next. When we had trouble getting mum's GP to take an interest, we visited the Memory Clinic. Don't know if you have one in your area but that's a good starting point. Also, if you could call in the community nurse and/or the community mental health nurse, they can point you in the right direction and tell you what support is available. Also the Occupational Therapist, if your sister needs any aids to help her physically. Social Services can help with respite and care, but I'd start with community nursing as they seem to have more time for people than busy GPs.
This is a great forum if you need to "let it all out" I'm a new member and have received so much support and sensible advice I feel loads better about my role as part-time carer.
Good luck and hope you get help soon.
Vonny

 

[Scottie45]

Hi Minky

Welcome to TP,hope you find some answers to your questions on here i am sure you will.Vonny has gave you some good answers.I hope you get things sorted out.Take care x

 

[minky]

thanks for your replies it seems weird that there are people out there that know what im on about! even though ive only just touched the tip of it. a dr that deals with dementia diagnosed sandras dementia and refered us back to our gp who mentioned a memory clinic we have heard nothing else though. we have an appointment with the gp on thursday 26th feb and i have got a list of things that i need to ask it seems as though the doctors are a little bit unsure of dementia.

 

[patradnor]

Hello Minky
I suggest you get in touch with your local Alzheimers society.They will point you in the right direction.
Love Pat x

 

[minky]

thanks pat will do x

 

[Sam Iam]

Hi Minky,
does Sandra have a Community Learning Disability Team ?
As they should be more forth coming with advice and help for your sister. Dementia sadly is (for the want of a better word) common in Down's Syndrome. I am very surprised at the lack of help Sandra has recieved.

Look in the "younger people with dementia" part of TP there is a lady there who's daughter is in the same situation as Sandra.
Best wishes xx