New to it all

[loppy]

My sister has recently been diagnosed with alzheimers, she is 35 and also has down's syndrome. I am finding it hard to come to terms with, I keep thinking that there has been a big mistake. Deep down I know that it is as they say. I am having nightmares. I am tearful and want to be able to do something. The prognosis is not good and we are expecting a rapid decline. I want to be able to learn more about the day to day reality of alzheimer in someone with downs. The handbook leaves alot of things unanswered. She is between early and mid stages. Any advise would be good.

 

[charleyfungus]

a cyber hug loppy

Hi loppy,
That saying "there is always someone worse off than you " came to mind when I read your piece about your sister. My wife, Elizabeth was 49 when I first realised she had a problem, but 35 is even worse, I'm not sure about the downs syndrome link but early onset in our case is akin to going down a flight of stairs, for a while you stay put and then you notice you have decended another step.The only advice I could give after 6 years of caring for my Lady is to let the tears flow when you are alone, but savour any good moments, live in the instant, not an easy thing to do, but it works believe me. my heart goes out to you

Charley

 

[alex]

Hi Loppy

I'm sorry i have no experience of Downs at all so i can't help, but just wanted you to know that there are a lot of people here who are all hurting for different reasons so your with friends.
TP is the best place when your feeling tearful...........you'll get lots of support and hopefully good advice.

I hope you get through this tough time.
Thinking of you.
Love Alex

 

[dmc]

hi loppy

ive have no knowledge of downs either, but like your sister my mums dementia is rapid, so i know how your feeling
just wanted to welcome you to TP
take care

 

[Grannie G]

Hi loppy

I`m so sorry about your sister.

One of my friends has a sister with Down`s Syndrome.She is always telling me that people with Downs age much quicker than those without the syndrome. Her sister is in her 40`s, and has done well, but now shows many signs of premature ageing. She is losing her hearing, her mobility is becoming affected and she gets confused and has some memory loss.

I don`t know if all those affected by Down`s Syndrome age as quickly but I do believe it`s quite common.

All you can do really to help her is to be there for her .

Sorry I can`t be of more help. Grannie G

 

[loppy]

thanks

Thank you all for your kind words. It's not always easy to talk to people who are close.It's good to think that there are people there.