Do we push him to talk or leave him be?

[MLM]

My FIL was diagnosed with early onset Alzheimer's in May and he doesn't appear to want to discuss it so anything we do that involves collecting info, meeting other people, sorting out finance and legalities, is done discretely/secretively.

I asked him if he feels any difference with his medication and he said "yeah fine" quite bluntly and like I had got his back up a bit so I didn't push the topic. But it is already the elephant in the room and I would love him to be with us in our proactive approach to his diagnosis. Should we leave him be though? Do your loved ones talk about their diagnosis or know about it?

 

[Sue J]

My FIL was diagnosed with early onset Alzheimer's in May and he doesn't appear to want to discuss it so anything we do that involves collecting info, meeting other people, sorting out finance and legalities, is done discretely/secretively.

I asked him if he feels any difference with his medication and he said "yeah fine" quite bluntly and like I had got his back up a bit so I didn't push the topic. But it is already the elephant in the room and I would love him to be with us in our proactive approach to his diagnosis. Should we leave him be though? Do your loved ones talk about their diagnosis or know about it?

I don't think anyone ever does want to talk about it, it is almost a symptom of the disease itself i.e. that it mustn't be talked about. But every sufferer, I believe, knows there is something wrong. It depends very much on the individual character what is spoken about.

I have a friend who, whilst I have always known something was wrong, having my own symptoms, wasn't always able to understand the full extent of hers. Understanding her family situation and events/decisions that have occurred on her behalf (before I knew her) and that she is now aware of and horrified were taken on her behalf, albeit possibly made with best intentions but with ignorance, decisions on her behalf without discussing the realities of the situation with her. I always discuss the realities of the situation with her because I know she is intelligent and does not want/need to be left in the dark, I am very similar. I would ask about the character, nature of the person pre symptoms i.e. if someone was a proactive person before symptoms then it would be unwise to 'do it all for him' without telling him or getting him alongside somehow, it is fuel for paranoia when the latter strikes. People can make the mistake of thinking that someone loses their intelligence and also their ability to feel when dementia strikes - not so in my experience. It is a blow to the changing 'face' of the person when all of a sudden they are treated differently because of being ill.

I have not been diagnosed and am in my early 50s but have had symptoms for 5 years now. I have age on my side in that respect to adapt/structure a way of coping whilst I still have faculties even if intermittent. I do not want to discuss having dementia, I want to discuss ways in helping to cope with living my life and if memory loss at times makes that difficult then that is what I need to discuss - society doesn't want to discuss it much though

Best wishes
Sue

 

[Witzend]

My FIL was diagnosed with early onset Alzheimer's in May and he doesn't appear to want to discuss it so anything we do that involves collecting info, meeting other people, sorting out finance and legalities, is done discretely/secretively.

I asked him if he feels any difference with his medication and he said "yeah fine" quite bluntly and like I had got his back up a bit so I didn't push the topic. But it is already the elephant in the room and I would love him to be with us in our proactive approach to his diagnosis. Should we leave him be though? Do your loved ones talk about their diagnosis or know about it?

How is his short term memory? Is he likely in any case to remember any discussion? My mother's memory was already very bad by the time she was officially diagnosed, so even though she apparently accepted that she had AD when the GP told her, she had completely forgotten 15 mins later, and we saw no point in constantly reminding her. And in fact the worse she got, the less she apparently thought there was anything wrong with her, since she simply could not remember at any given moment that she could not manage her own shopping/cleaning/cooking/finances etc. any more. We had to see to everything discreetly, as you say, without discussing it with her. If she asked, the standard sort of reply was, don't worry, we are seeing to X or Y for you.

Of course everyone is different, and so much will naturally depend on the stage the person is at, and how much insight they have into their own condition.

 

[Worriedone]

How is his short term memory? Is he likely in any case to remember any discussion? My mother's memory was already very bad by the time she was officially diagnosed, so even though she apparently accepted that she had AD when the GP told her, she had completely forgotten 15 mins later, and we saw no point in constantly reminding her. And in fact the worse she got, the less she apparently thought there was anything wrong with her, since she simply could not remember at any given moment that she could not manage her own shopping/cleaning/cooking/finances etc. any more. We had to see to everything discreetly, as you say, without discussing it with her. If she asked, the standard sort of reply was, don't worry, we are seeing to X or Y for you.

Of course everyone is different, and so much will naturally depend on the stage the person is at, and how much insight they have into their own condition.

When my mum was diagnosed she told the consultant we saw that she thought we had come on my behalf ! It did not sink in and she has no recollection of the meeting and diagnosis. All decisions have had to be made without reference to her but then in their marriage my dad always took the important decisions. If you asked mum if they wanted to come and stay for example, it was always "Ask the Gaffer!" My mum does not seem to think anything is wrong with her!

 

[Spamar]

In the couple of years after diagnosis OH was happy to talk about it. Several years later, he realises his memory is bad (nearly non-existant) but does not like any mention of the d-word. We do go to the Alzheimer's society meetings and he's happy with that. So it varies from person to person, like most other symptoms and the general progression of this horrible disease.