New to Forums and Alzheimers

Susu48

    My husband had first time Epileptic  Seizures in 2018. 4 years ago to the month At that time    I was told  (,but he was not)  that it was the beginning of Alzhiemers, as that is what most men in their 70's with first time seizure end up with.. .His health records show he has some mild  cognative imparement but I notive it is accelerating.Also  I notice is the changes in his personality.. he's not the same. While usually being very active and walking miles each week he has become mostly sedentary .. No dorctor has offically told him yet but I beleive he is aware. . Is it my resopnsibility to tell him? Should it come from an  medical professional. I just don't know if this would help or hinder?  Any  guidance  is  welcome..

Thanks you

M1

Hi Susu and welcome.  I can say from experience it probably won't make any difference if you tell him, and most here--I'm sure others will chime in--would tell you not to.  No, it's not your responsibility, but it probably won't make any difference if a doctor tells him, either.  Many with Alzheimer's and other dementias have anosognosia, which is true inability to recognize that there's anything wrong, and if you confront him, it will just cause anger and upset.  You, as the caregiver, have to come up with workarounds.

I had this same experience, when I first noticed changes in my partner, I said something to her and had my face bitten off.  Then I went to our doc, thinking that if he told her she was developing dementia, she'd have an "aha" moment and realize what she had, and would realize that she needed to rely on me for help.  He literally laughed at me, then gave me things to read about what a rollercoaster I was in for and how to prepare myself as a caregiver.  That's probably where you are.  The diagnosis has more implications for you than it does for him at this point.

Interestingly, as my partner got worse, it got harder for her to not realize that there was something wrong, and occasionally we could have conversations about it.  But then she'd forget those conversations.  And after a while, we just stopped having them--and all other meaningful conversations too.  she's in memory care now.

Family is forever

Hi Susu48 -  I am fairly new to this forum but I feel as if I have had a couples years under my belt caring for someone with dementia. My mother went from having some symptoms of mild cognitive impairment to not recognizing me or my father (her husband of 54 years) in a matter of weeks. I always promised my mother that I would never lie to her if she was diagnosed since dementia has plagued our family for generations. The first few times she would ask me what was going on I would explain to her that she was diagnosed with dementia and it would utterly tear her apart inside. I finally made the realization that I needed to protect her mental well-being and put that above my promise to never lie to her. 

Now when she asks what is going on I tell her that we are trying everything we can to get answers and that I will always be here for her even if she is not sure who I am. That seems to calm her down and for the most part she avoids the horrible pain and stress she was experiencing when I told her the real diagnosis. 

Best of luck, and I am so sorry that you are also going through this. 

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harshedbuzz

Susu-

It's hard to say. There is no one right answer.

You know your spouse best-- if he's still in very early stages he may have the ability to appreciate what this means and find the knowledge empowering. Or it could trigger depression, anxiety and agitation that destroy the quality of life for both of you. 

I've known of people who were told and who became passionate advocates. There are at least 2 regular posters on this forum who have had a cognitive shift who bring insight and support to the boards. 

My dad's situation was unusual in that he had a mixed dementia. He was diagnosed during a hospital admission during a psychotic episode. The ER resident gave him a possible diagnosis of WKS. Then the attending changed it to Alzheimer's and told dad who said it was the "best news he'd heard all day" as he didn't want to stop drinking. He was turfed to their memory center where he completed the dementia workup and given a diagnosis of WKS and Alzheimer's. Because WKS can be alcohol-related and improved in some people by lifestyle changes, he was reminded at every appointment and every time he asked for a drink at home. This triggered agitation and aggression. Life was hell. My mother seemed compelled to remind him as a kind of punishment for 60 years of indiscretions which never ended well. 

This helped her a lot.

understanding-the-dementia-experience.pdf (alzconnected.org)

At this point, he knew he couldn't remember new information, but bragged on how he could recall details from the past. He also conflated memories which he believed were true, so while he knew he couldn't recall some things he felt this was a normal part of the aging process. 

Over time, anosognosia set in and he was no longer aware of the cognition and skills he'd lost. In his mind, he was just as capable as ever. He wouldn't shower because he believed he already had as it was his custom to shower at least twice daily. Telling him he had dementia by this point would have been cruel. On the rare occasion he had enough clarity to realize he was confused, we brushed it off as no big deal which kept the peace.

HB

Arrowhead

It would probably be alright to tell him, at least once. If he accepts it, then alright. If he will not accept it, then never mention it again.

LoriAnnM

My mom just had surgery and when she came out of it she seemd to be 10 times worse. She moved in with my brother and we are all trying to help her try this. Yesterday we were sitting laughing and she looked at my brother and said who are you? This lasted the rest of the night and 1:2 of the next morning. Then she realized who he was! Has this ever  happened in a split second to anyone else??