• 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.

Help!!!

BRANDY

Registered User
Nov 29, 2005
3
lanarkshire
Now I really am angry.

Just sat and typed a long note pouring out my feelings and the computer shut down on me ARGHHHHHHHHHHHHHHHHHHHHHHH

The jist of it was that my dad was diagnosed last year at 59 ( think he has had it from about 54)

Why ?????

How long will he have ????

How quick will he deteriorate ????

My gran also had it but my mum and I cant remember these things as who would want to think of that time again as it just breaks out hearts and we certainly dont want to think that it is going to happen to dad.

I just feel so frustrated and angry and heartbroken, every emotion really.

Please help !!
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Brandy, and welcome.
Why ?????

How long will he have ????

How quick will he deteriorate ????
Unfortunately, there are no easy answers to your questions.

Key thing from now is to grab every moment with him and live day by day - that way you are at least sure you are not wasting opportunities you may regret having lost, some time in the future.

Your Dad is what is known as a person with Early Onset dementia - that is, he is under 65 when diagnosed. There are quite a few of us in the same situation as you are on Talking Point, and at different stages of the development of the illness. So there are people who understand, here.

Feel free to ask questions, reply to others' posts, and to rant when you feel like it.

My own suggestions are to keep a diary of how Dad is, what symptoms he shows because that can help in many ways in the future. Also, take pictures.

Above all, realise that Dad is quite normal, and will continue to be so. His normality may not be that of others, but to him, it is. If he behaves strangely - in your terms - then it is not him, it is the dementia. You won't be able to bring him fully into your world, but I have found it best to enter their world, as far as that is possible.

You may find you have to tell lies [not unkind ones], say things that make sense only to him.

While there is nothing that can be done to cure dementia, we can do things to make it easier on us, and on them. There will still be happy times. Enjoy them!

Good luck!
 

BRANDY

Registered User
Nov 29, 2005
3
lanarkshire
help !!!

Thanks

I have just been looking at some old posts from lots of members and I think you are all fantastic, caring and truly strong people.

I just hope I can be as strong as you all. We are nowhere near the stage that some of you are at and I really believe that you are all very special.

I know what you mean by appreciating every day I have with him, and I suppose ( if i try to see the positive side - if you can call it that !!) I am quite fortunate as I can use this time to do more with him, spend lots of time with him whereas others who may lose there loved ones suddenly dont have that chance.

Thanks again for just being there, and I'm sure I will log on regularily and draw strength from you all.

Love

Amanda
 

daughter

Registered User
Mar 16, 2005
824
Hi Amanda,
I am quite fortunate as I can use this time to do more with him, spend lots of time with him...
- that is so true. I am so glad that I spent time with my Dad (and Mum) over the past year. Although we would obviously all wish for different circumstances, Mum and I have a lot of good memories from our visits and outings with Dad - and, as you say, in a wierd yet positive way I am grateful to be allowed that opportunity.

Best wishes,