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Revelation of the Prognosis

Chris M.

Registered User
Jan 14, 2021
21
0
How and when does one reveal the reality of what lies ahead?
Is it best not to do so in all it's detail?
 

lemonbalm

Registered User
May 21, 2018
1,389
0
Reveal to whom @Chris M. ?

One really doesn't know what lies ahead at all. Best not to torture yourself or anyone else fearing all that might be, in my opinion. I've never really been a go with the flow person but I became one, looking after mum. It was the only way to deal with it I think.
 

Quite contrary

Registered User
Jan 5, 2020
178
0
Ilford, Essex
Hi @Chris M. My husband was diagnosed nearly 3 years ago and I have never spoken to him about the prognosis of the disease. I believe that he really does not need to know that. Of course I do because, like you, in the beginning I researched everything about it and nearly drove myself insane with the anxiety, looking too far into the future. Now I take things a day at a time and only read the threads on this forum, which are a wealth of information, but in a very down to earth kind of way. Everyone is very supportive and it is amazing how there are also some funny moments in spite of difficulties which has helped me to see the lighter side of some of my husband's lapses. What I am saying is 'just put one foot in front of the other'
 

jennifer1967

Registered User
Mar 15, 2020
3,205
0
Southampton
i told my husband that hes got vascular dementia but not long term. he wanted to know life expectancy, i had a great uncle that had just died of it and he was 90 so used that. told nothing to worry about and i would be here to look after him. he said he trusted me implicitly and left it at that. it doesnt serve any purpose or make it any better so doesnt need to know
 

Vitesse

Registered User
Oct 26, 2016
244
0
I agree with the other posts, what purpose does it serve to talk about what lies ahead? What will be, will be!! My husband was diagnosed in 2016, and we didn’t
really discuss it too much. We just said we’d cross the bridges when we came to them. The first year went by with very little change except his memory letting him down, and he was aware of it and frustrated by it. I decided not to read too much about the condition as I found it fairly depressing and scary. From 2018 on, things have gradually worsened to the stage that he doesn’t know me, doesn’t know where we are, and basically lives in a little bubble where I do most things for him and he wanders about in another world. But he doesn’t know, and that’s the point. If he had known what was coming, it would have upset him, worried him and to what avail? It’s a horrible existence for me, I hate seeing him like this, and I know he would not want to be like this. But we can’t do anything about it, except make him as comfortable and content as I can. Try to go with the flow, however difficult that may be for you. I used to be a control freak, now I can’t control my way out of a paper bag, just live from day to day.
 

Jacques

Registered User
Apr 4, 2020
46
0
My husband knows that he is having a problem with his memory but doesn't realise the reason for this. When he gets upset about losing things I just remind him that he is having a problem with his memory and we leave it at that. We watched our SiL go downhill and at this moment in time he can still remember her. By the way I'm still looking for the dustpan and brush!!
 

Lawson58

Registered User
Aug 1, 2014
2,308
0
Victoria, Australia
The reality is that none of us can predict what path any person with dementia will take so what do you say? How can you explain what you don't know but can only guess at.

My husband's mum had Alzheimer's and her behaviour and that of my husband bear no resemblance to each other. My husband was very difficult in the three years before diagnosis which was almost seven years ago. He is a high functioning individual perhaps because his memory problems are hugely different to other people with dementia. He plays bridge regularly several days a week but cannot remember much of the first thirty years of his life.

At diagnosis, I would have expected him to be like others.

I think you should keep answers to any questone she might have simple and reassuring, but you know that already. My husband prefers not know as that would scare the pants off him.
 

Chris M.

Registered User
Jan 14, 2021
21
0
So many thanks to those very helpful replies about revelation of the prognosis.
Reading them I can almost feel the anxiety seeping out of me like deflated Michelin man!
 

Lfc

New member
Jan 16, 2021
3
0
I’ve always been a forward planner and a “now “ person. I only joined this forum yesterday and I can see I’m going to have to change. i have donated regularly to the society for many years after seeing several of my friends getting Alzheimer’s. Little did I realise how I would need the support of the society myself In fact it was their decline which made me aware if the changes in my husbands condition. My husband plays golf, walks daily, belongs to a choir, plays Bridge twice a week, does daily crosswords and Suduko, visits friends in a care home and takes these friends out for lunch each week . He is a copious reader .The list goes on and suddenly because of COVID most of these activities have stopped . He is lost, and bored doesn’t know what to do with himself . At least during the first lockdown he was working in the garden and doing DIY.
It’s all come at once and I’m struggling . Hopefully as Age UK have become involved and I will be able to cope better. I suffer with anxiety so I hope things will become more tolerable. It’s been beneficial just writing this down
 

jenniferjean

Registered User
Apr 2, 2016
896
0
Basingstoke, Hampshire
It’s been beneficial just writing this down
Yes it is. A good idea is to start your own post and keep account of how things progress. It helps to look back over it from time to time.
I would have been lost caring for my husband if it hadn't been for TP. It's the best help around as we're all in it together.
 

Jacques

Registered User
Apr 4, 2020
46
0
I would have been totally lost if I hadn't found these wonderful people. They have already given me advice regarding medication and explained the reason for my husbands behaviour. I know that I am going to have to cope with more challenging times in the future but take strength from knowing that I am not alone. You also will not be alone.
 

MartinWL

Registered User
Jun 12, 2020
722
0
I too have avoided too much detail in dealing with my father. He gets angry with himself because of frequently losing things around the house. I have tried saying it is an illness, can't be helped. That hasn't had much of a calming effect. He is aware of these problems but when it comes to other common dementia issues such as operating gadgets and domestic equipment he tends to claim that the equipment is faulty. On my last visit I fixed the washing machine without much difficulty but he had been talking of calling in a repairer, fortunately I had persuaded him not to untill I had investigated. There was nothing wrong with it.

The trouble with not talking about the D word is that he may behave as if everything were normal and potentially try to do things that are not safe for him to do any more, for example operating an electric hedge-cutter. Less seriously he continues to try and do things with his computer that are now beyond his reducing skills and gets agitated when he fails. Like others I try to use excuses and distraction but he is still able to discuss technical stuff so the issue of why he can't do things is hard to avoid.
 

canary

Registered User
Feb 25, 2014
14,933
0
South coast
The trouble with not talking about the D word is that he may behave as if everything were normal and potentially try to do things that are not safe for him to do any more,
Unfortunately, I think that you will not be able to persuade him not to do things whether you use the D word or not. In his own mind, he is perfectly capable of doing everything and trying to persuade him otherwise is doomed to failure. If you insist that he doesnt use things that are maybe dangerous, then he will defy you. You are going to have to use love lies and subterfuge, however much you dislike it.

Could you perhaps remove dangerous stuff like the hedge cutter by persuading him to lend it to you and then "forgetting" to bring it back (although you will bring it back "tomorrow")? Or perhaps you could offer to do things for him, even though you "know he can do it himself ";) ?
Otherwise you may just have to allow him to fail, heart rending though that often is.
 

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