how long ago did you know things were not right

[bel]

i would like to hear your experiences
Now with hindsight
hubby has not been well for a lot of years he is dylexic and i thought it was ADD as time went on
no i am not going to put myself down
2 years ago consutant said possible frontal lobe dementia now he says probable frontal lobe
have a day off they do not live in the world we live in
like i have told him he spends 20 mins with me and hubby in a room where there there is no distractions his answer is get hubby to go to day centre once a week so they can monitor him hubby does not want to know
i know for them to see hubby for longer periods will help them to realise the problem but i know the problem hubby has dementia WHY DO WE FEEL LIKE WE HAVE HAVE TO PROVE IT LOVE BEL XX

 

[Nell]

Dear Bel,

Is it the fact that the doctor will only say "probable frontal lobe dementia" that is so upsetting. . . .?? I think we all find that getting an "absolute" diagnosis is very hard to do - I believe even now the only sure way to diagnose Alzheimers is with an autopsy. However, you KNOW your husband has dementia, just as we all know that our loved ones have a form of dementia. The old saying "if it looks like a duck, and walks like a duck and quacks like a duck - it probably IS a duck!" seems to apply to dementia!!

However if the lack of a definite diagnosis is affecting the treatment your husband receives, it is naturally of great concern.

The day care idea might be worth sticking with - even if it takes time for your husband to agree. It would provide you with some respite. I realise that if our loved patients DON'T want to do something, they simply WON'T!! (Mum is a classic example!) But maybe the idea will begin to take root after a while and he'll be more open to the idea. . . ??

Whatever happens, just know we are all here for you.
Hugs from Nell

 

[Grannie G]

Hi Bel and Nell, We first began to suspect something was wrong 3 years ago, but my husband had had questionable behaviour, probably 6 years ago. We didn`t recognise it for what it was. We thought he was just becoming a grumpy, forgetful old man.

At this stage, I don`t wish to be negative but I can only imagine him going to Day Care when he doesn`t have the ability to agree or disagree.

If I ever suggest reluctance to leave him for more than an hour, he tells me he is well able to look after himself and I shouldn`t worry.

Yesterday he was too cold to come to the shops with me. I left him a note, where I was, what time I left and where I was going. I also left the mobile number. I was out for 1 hour. When I got home, he had his coat on. `Where have you been? I was worried you might have had an accident. I was going to come to look for you?.`he said.

As for diagnosis, because it is so uncertain, is a strong case for medication to be available to all. Then, at least it has been tried. I know the dreadful side effects it had with my husband, I was grateful it was offered immediately, and I can now accept, with peace of mind, there is nothing to help him.

I honestly don`t know whether he actually has Alzheimers or some other condition causing Dementia. Thinking back, Alzheimers wasn`t actually voiced. The consultant said the scan showed abnormal brain shrinkage and prescribed Aricept. Because I knew about Aricept, I presumed it was thought he had Alzheimers. Now his short term memory is sometimes less than a couple of minutes, his movement and fine and gross motor skills are affected, as is his spatial awareness. But he has lost no language, even though he cannot have a rational or logical conversation.

He insists on vaccing every day, but if you saw how he gets his feet entangled in the flex, you would cringe. I have to let him do it because this is the only household task he can manage and he clings to it for dear life. He used to do all the cooking, when we both worked, but now he has no interest as the organization asks too much of him, even if I do all the preparation and clearing up.

There is just a slow steady decline. We can only live from day to day and make the best of what we have.

One good thing. The anger seems to have gone. There is less conflict. That in itself is a blessing.

Sorry for going on. We are all in the same boat, but on different decks.

Love Sylvia xx

 

[bel]

thanks all i appreciate big time your feed back

nell i know that the only way to say for sure what type of dementia is by autopsy
i know it does not matter - i think its me hubby thinks he is ok and i try to go along with it
day care like you say for a few weeks once a day is the way to go for the future so they can see what he is like in a day to day situation
THEY DO NOT BELEIVE ME i think that is what hurts me so much
i know they have to be careful
but dont records over 36 years show hubby and i are honest people never taken anything from socity until now it upsets hubby big time that they will come and say he is ok to work i try to reasure him but it still in the back of his mind he does an odd job one that would some one 5 mins he takes all day
he looks so good
but only you on TP know ---
love bel xx