• 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.

What next?

twink

Registered User
Oct 28, 2005
265
67
Cambridgeshire UK
hiya

My husband was diagnosed in August at the age of 55. I didn't know what to do either, we hadn't lived here for very long and I didn't know anyone. I rang my local Alzheimer's Society and they have been brilliant. I speak to the manager quite often and she got the Support Worker to come round and see us and she is a really wonderful help. Brilliant at filling forms in, you can have a laugh with her and she always rings back if I leave a message. I also go to two different carers meetings a month and they are really useful for advice, as is this wonderful group.

It will start to become clearer for you, good for you posting in the forum, you will get helpful advice here. Most of them know far more than I do about everything to do with AD.

Best wishes,

Love Twink/Sue
 

Amy

Registered User
Jan 4, 2006
3,453
Hiya Robbo,
So sorry to hear about your husband; don't panic, maybe you don't need to 'do' anything yet, just be. Make the most of every moment, take lots of pictures, continue doing the things you enjoy doing together.

I know the Society has lots of good help sheets and booklets, that tell you about the disease. I know when my mum was diagnosed I read all I could; my dad on the other hand closed his eyes a bit, I had to drip feed him information.

There are many others on here that are in the same position as you, (I have only experienced it from a daughter's perspective). You have done the right thing posting on here; I only discovered this site when mum had been ill for many years, and had had no-one to ask advice of or to discuss feelings with. It is so good to not feel isolated; mainly people who do not have a relative with dementia do not understand the issues and feelings involved.

So looking forward to getting to know you.
Take care.
Amy
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
I have split this from the original thread where it was posted because it should receive more replies here
 

crums

Registered User
May 22, 2004
12
shipley
hi robbo my husband was diagnosed 5years ago aged 51. take every day as its comes and enjoy your time together. contact your local alzheimers society who will help and support you in every way they can.take care and keep smiling i know this is hard . best wishes clarex
 

zed

Registered User
Jul 25, 2005
76
London
Also remember, every person experiences dementia in a different way. When my mum was diagnosed aged 57 her doctor made some sweeping generalisations about how her condition would progress, and none of that has happened. She is doing well.
 

daizee

Registered User
Mar 31, 2006
51
Broken Hill, Australia
re: what next

Hi, Robbo, I guess I'm going to answer this a little differently from what's already been said because when my husband was diagnosed 7 years ago at 47 and I asked myself that question 'what do I do next' along with the practical advice I needed, what worried me the most was ..what do 'I' do next...me the person. I know at that stage there was a lot of helpful advice about coping and getting help and support, but I seemed to be just nodding and smiling and not taking anything in , because in my head all I could hear was....... this is not real, it doesn't make sense , it can't be happening. Maybe you're a bit more' together 'than I was , but if you do find yourself in that same state of denial from my experience what happens next is you panic you cry and ask your self how your going to get through, and then you come to this point when you realise that you've got a long hard journey ahead of you , I used to liken it to those pioneer women in the olden days, they did tremendous things against unspeakable odds and were just ordinary women like us going off into the unknown. Your inner strenghth like theirs is still untapped, and so if you ever feel it's too hard you can't go on ,think of those pioneer women, because now you're one of them too. cheers Daizee