• 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.

How does it happen ?

tubbie

Registered User
Nov 1, 2006
16
Cambridge
Apologies if this subject has come up before but I'm still quite new here! Just to put you in the picture, before I ask my question, here are a few facts :

My Dad is 70 and, according to his psychiatrist, in the "middle stages" of AD. He can still hold a conversation (albeit a very repetitive one), he still has a very good appetite and he still manages to wash, dress, feed himself etc. His sense of humour remains in tact and he can even be quite sharp witted at times. He doesn't however watch tv anymore or read and can't use electrical appliances. He can no longer remember anything that he does, no matter how significant, or anything that is said to him. Just recently he's started asking where his parents are and they died 50 and 25 years ago. He has also, on occasions, been unable to tell me apart from my sister and vice versa. He struggles to recognise my brother on the odd occasion they meet these days (don't get me started...).

I know that Dad is going to lose the ability to speak, recognise me, feed himself etc etc but I'm struggling to understand how this happens. I think the fact that he is still physically in control makes it hard for me to imagine the future and I'd really like to prepare myself mentally for this, if I can. I am a bit of a knowledge freak and don't like surprises. Can anyone tell me, will Dad's decline just creep up on us slowly or will he suddenly get worse? Which faculties go first?

If anyone could share their own experiences or let me have the benefit of their (un)professional opinion I would very much appreciate it.

tubbie
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi tubbie and welcome to TP
Can anyone tell me, will Dad's decline just creep up on us slowly or will he suddenly get worse? Which faculties go first?
you ask the impossible, I think... each person's dementia road is different for the following reasons [my opinion only]

the brain gets hit randomly, and there is no predicting which areas will be hit next - those that hold memories, those that control muscles, interpretation of input, balance, etc

Some people can walk all the way through, while others lost that faculty at some stage, perhaps even early on.

If Dad has Alzheimer's then his decline will probably be slow and steady. I recommend you keep a diary to log the problems he has from day to day, month to month. Otherwise, it creeps in and it is difficult to say it is worse today than last month.

If he has vascular dementia [it is possible to have a mixture of dementias, which really confuses interpretation!] then the changes are likely to be much more identifiable, and there will probably be a decline after each stroke of mini-stroke.

Since you are a knowledge freak, then I do recommend the diary approach.

Good luck!
 

tubbie

Registered User
Nov 1, 2006
16
Cambridge
Hi Brucie

I guess it's one of those "how long is a peice of string" type questions then! I suppose I had imagined there would be some sort of pattern that most AD patients would follow but from what you say this isn't the case. I will have to try and come to terms with the lack of timetable for this one.

For what it's worth, AD hasn't been ALL bad news for us. Dad has actually become a far nicer person since his illness. That's not to say he doesn't have the devil in him some days but compared to the man he has been all of my life I have to admit I much prefer him now. It may sound mad but in some ways Alzheimer's has given me the Dad I never had but always wanted. How ironic is that...

tubbie
 

Libby

Registered User
May 20, 2006
625
62
North East
HI Tubbie

Your Dad seems to be at the same stage as my mum, although just over the last few weeks, she doesn't always recognise me when I go in. She's totally forgotten about my eldest sister, as she lives down south and doesn't get up to visit much.

I thought it would hit me really hard when she forgot who I was, but after reading a lot of the posts on her, I think I was fairly prepared for it, and I just took it as another stage.

Take care

Libs
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,406
Kent
Hello Tubbie, My husband sounds at a similar stage to your dad, with one or two exceptions.
I`m still surprised he has all his language and keep expecting it to begin to go. He does watch television, but only programmes he really likes, either political, or repeats of old favourites like Dad`s Army. He buys the papers every day, out of habit, but when I read bits out to him, even though he appears to have read them, it`s new news. I`m still not sure whether he`s read and forgotten or just read the sports page.
My husband is 74 and was diagnosed last year, after about 4 years of increasing symptoms. Like you, I watch and wait, but really know there is no answer. No 2 people are alike and some deteriorate far faster than others.
All the best Sylvia
 

tubbie

Registered User
Nov 1, 2006
16
Cambridge
Grannie G & Libby - thanks for that. It's funny how they're all different isn't it? I guess we can only watch and wait.

I saw Dad's social worker this morning and she was telling me about the problems some of her dementia cases have with acting out nightmares. I sat there thanking my lucky stars we don't have that problem with Dad and then guess what? I went to see him this evening and he told me all about a terrible nightmare he had had. I guess it could be a one off, let's hope so.

tubbie