Talking about the diagnosis

[BeeBeeDee]

My husband was diagnosed in July after a couple of years of concerns. He doesnt think that there is anything wrong with him, despite being unable to do simple tasks without alot of guidance, despite being quite nasty, despite sitting doing nothing all day long unless I gee him along - well despite lots of things.
We dont talk about the diagnosis as I read that you shouldnt tell them what they have.
My question really is do you just bumble along as best as you can ignoring what is happening or do you speak to your partner about it.
I am struggling to know what to do as his character changes more and more and the unpleasant conversations we have. I get so irritated with him and feel so bad about it.

 

[sapphire turner]

Bumbling seems to be the easiest approach until you get to a really hard question- then it all gets a bit trickier. Some people have advised lying and hoping they will forget but I don’t feel easy about that xx

 

[Bay Tree]

I think it depends on the willingness of your partner - my husband is willing to talk about it, even if he forgets later what he's said! If it causes upset or arguments then of course it's more difficult. Is there any possibility that a third party say someone from the memory clinic or Alzheimer's Org or any other people you may be in touch with who could act as some sort of intermediary? The memory clinic were very helpful to us, getting us to talk about it, but there again, I know that in some areas they wouldn't be helpful at all.

 

[Fugs]

As others have said, each PWD is different. My wife knows that she has dementia, but never mentions the "A" word. Despite her mother dying from Alzheimer's she (mostly) has no recognition that she is following the same path. Occasionally some awareness creeps in and she becomes hysterical that she is going to die. This take 5-6 days to calm down and re-forget. So no I don't discuss the disease, or our future, with her.

 

[Grannie G]

I bumbled along.

He did ask what was wrong with his brain and I told him Alzheimer`s, which made him determined to help himself get better. We spent a lot of money on herbal and nature cure remedies which he had always believed in, plus a tin of sardines every day, when he heard oily fish was good for the brain. It was heartbreaking.

Throughout this period and afterwards, Alzheimer`s was never mentioned again. It was always memory loss.

 

[SeaSwallow]

My husband is fully aware that he has dementia and will refer to it. Five minutes later he will say that there is nothing wrong with him.
Some people on here just refer to age related memory problems and their loved ones accept that. Everyone is different.

 

[2ndAlto]

Everyone is different and their reactions to the diagnosis will be different. You know your husband and what his reaction to discussing his diagnosis is likely to be - and if there is any benefit to be gained by discussing it. If you haven't already got POA in place you need to do that - if you think it is going to make him angry, tell him "in case anything happens to YOU (not him)"... My OH and I discuss his diagnosis quite often and how it effects both his life and mine and he makes reasonable comments but it doesn't help much as he promptly forgets the whole discussion. I know it is hard not to get irritated and upset - reading an article on here about compassionate communication - I think this article https://www.alzsd.org/dos-and-donts-of-compassionate-communication-dementia/ helped me a lot. I think there is a better link to that - hopefully someone will come along soon and post it for you.

 

[Grannie G]

I think there is a better link to that - hopefully someone will come along soon and post it for you.

Is this the link you meant, @2ndAlto ?

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[Rishile]

My husband is just beginning to realise there is a problem and I seem to be doing everything for him. He feels guilty about this but is convinced he can get himself better. I try to be as honest and positive as possible without upsetting him. I told him he has a disease in his brain that makes him forget things and makes him do some strange things. He seems to accept this. We regularly have a long, serious conversation about things that matter to us. He has now started to initiate these conversations and will ask me questions and tell me how he is feeling etc. I try to answer with love because even if he forgets the answers I give him, he remembers the love behind the answers.

As others have said, you know your husband and what he will accept and what he won't.

 

[jennifer1967]

we openly discuss his dementia and hes fine about it. he will ask me questions, let me help him, is very aware. we use the word dementia as well.

 

[BeeBeeDee]

Thanks everyone. I think it will be a case of bumbling. If a health carer says the A word he gets cross and says he DOES NOT have it.
I will try and be better with him, it is very hard though. I guess I am treating him just as an annoying husband rather than a husband with Alzheimers.
Yes we do have POA's in place thanks.

 

[maggie6445]

Each pwd will react differently. My OH really didn't have any recognizable symptoms before it very suddenly was apparent there was something wrong. He was an intelligent man and successfully managed them When he was diagnosed he was told and I talked about it but he never really acknowledged or showed emotion about the diagnosis. He talk about being " dopey and getting dopier". Phrases he had always used when doing a silly thing. He was possibly further in his journey than any of us realised.

Now ,he has no insight at all. Talks of going on holiday to Australia,a friend has been, and he is now fixated on Australia. I won't fly so he says he'll go on his own. When I say he wouldn't manage now he says there's no problem , of course he could . Mmm this is a man who can't get his shoes on the correct feet.

 

[2ndAlto]

Is this the link you meant, @2ndAlto ?

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

Thanks Sylvia if I may call you that? This is the one I meant - probably the same as the one you posted even if in a slightly different format https://www.alzsd.org/wp-content/uploads/2017/11/COMMUNICATION-Compassionate-Communication.pdf

 

[hillyjay]

In our house it’s always referred to as ‘your memory problems’. He was foanosed at a very early stage and was fully aware of being told he had Alzheimer’s - his father and grandmother also had it.

He never mentioned it for a long time, wouldn’t talk about it, but now he’s been k own when talking to someone to tap his finger to his head and tell them ‘I’ve got memory problems up here, you know’. Lately he’s also started using the word Alzheimer’s.
Everyone reacts differently to their diagnosis and you have to play it by ear.