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MCI progression, radio silence wanted

Posted by jemsm @jemsm, Feb 12 6:52am

After a year of extensive tests , Aug 2025 my husband was told he has Mild Cognitive Impairment, that there is a 50/50 chance it will progress, most likely into Lewey Body Dementia(FYI we had never heard of it either, but it sounds worse than alzheimers ).
My husband was adamant no one be told except his adult children and 2 of my sisters, who he is close to ( we both have very large sibling families). Doable, as it was not very apparent in casual conversation.
BUT 6 months later it is obvious to me - not him- that it is progressing. Physical and behaviour changes are happening, and he now relies on me completely for decisions, explanations and transportation(although he has not admitted it, he always automatically gets in the passenger seat. I am pretty sure he got lost last fall when alone or had a near miss/scare, but he didn't say anything. He just stopped voluntarily driving).
My questions is, when does his desire to be private get overridden by explanations needed for increasingly different (for him certainly) behaviour? I want to respect his right to his own decisions - but he is unaware of some of his behaviours. Heck just this week he relapsed to a state of anger where he accused me of gaslighting him, there was nothing wrong with his memory ( I heard that a lot until he finally got a diagnosis that multiple doctors have written down for him to be shown).
I also am afraid it wil affect some of his friendships, and his extended family will certainly be angry with me if they are unaware . What a mess. Any suggestions? New to this all. If it helps, he is 69, I am 62, married 41 years, kids all live within 5 miles ( we are farmers)

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cyds | @cyds | Feb 21 12:18pm
In reply to @rubyredkate "@rochrsalley81 Hi, we are also your ages. Husband diagnosed 10 years ago with MCI. We are..." + (show)
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@rochrsalley81
Hi, we are also your ages. Husband diagnosed 10 years ago with MCI. We are thankful its moving slowly but memory and worries are big issues. I’m currently working on our relationship. If they don’t trust us now it may be very difficult to deal with future hard symptoms.
Dr. Natalie has a YouTube channel called Careblazers. I am learning how my actions and words could really make the future difficult. They may not be able to do much in the future but the “feelings” they have towards us may make life very difficult.
Hugs to you

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@rubyredkate

I find that when DH and I have problems, he usually forgets the words, but the feelings remain much longer. And it’s taking longer to smooth things over.

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carolreid | @carolreid | Feb 22 11:08am
In reply to @cyds "@rubyredkate I find that when DH and I have problems, he usually forgets the words, but..." + (show)
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@rubyredkate

I find that when DH and I have problems, he usually forgets the words, but the feelings remain much longer. And it’s taking longer to smooth things over.

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@cyds
When I ask my DH to please stop doing something that is in really bugging me he forgets by the next time and continues the behavior ad infinitum. It is impossible to solve problems. I get more and more frustrated. It feels deliberate but I suppose he really does not remember.

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rubyredkate | @rubyredkate | Feb 22 2:54pm

I totally hear you. There are more times than not that when i disagree with my hubby due to Facts or Truth, he says “well you have your opinion, or No! im going to do it my way and walks away. Next thing i know its “ hay hun can you help me? Or he is making secret calls to business to get advice on his project that has gotten worse.
Now Im trying to ask him questions around the disagreement instead of correcting or reminding him. Its is very hard to continually die to self . For me im more peaceful when i start my day talking Jesus about every! You are not alone in this disease. Keep reaching out for companionship.

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judimahoney | @judimahoney | Feb 23 8:42am
In reply to @carolreid "@cyds When I ask my DH to please stop doing something that is in really bugging..." + (show)
Profile picture for carolreid @carolreid

@cyds
When I ask my DH to please stop doing something that is in really bugging me he forgets by the next time and continues the behavior ad infinitum. It is impossible to solve problems. I get more and more frustrated. It feels deliberate but I suppose he really does not remember.

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@carolreid
Yes, I get it. I try the strategies I've been taught in trainings I attend, like distraction and re-direction, however he stays laser-focused on whatever he is currently obsessing about (usually wanting to always leave the house and go 'somewhere'), and the repetition just starts all over again. If possible I then leave the room or put on my noise-cancelling headphones as a clear sign that I am not listening anymore.
All the best, dementia sister. 🌼

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 23 8:49pm

@jemsm, just checking in. How are you doing? Have you been able to decide who to tell, when and how much?

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lkbous | @lkbous | Feb 24 7:30pm
In reply to @kjc48 "@memoriestomoments I can't begin to thank you for your post and the link to the COmpassionate..." + (show)
Profile picture for kjc48 @kjc48

@memoriestomoments I can't begin to thank you for your post and the link to the COmpassionate Communication. It's so true. and so readable with what we need to remember. I have a husband with MCI, still independent, but very forgetful, and little follow through on anything that requires problem solving. So different from him in the past. Interesting enough, I have a periodontist, who's still practicing, up there in years, and apparently has some dementia. I'm struggling with an infection to an implant, and Thursday's visit to him, with a procedure he had done earlier that didn't work, and now has to be redone over again. Based on the his outburst, and his inabilty to remember, what he had done, let alone read through his notes, now I'm questioning what to do with going back in to have him redo the procedure. I keep remembering the periodontist outburst, and what he said to me, attacking me for what he didn't understand. I used short statements. I tried desperately, to communicate, and couldn't. So I walked out of his office, they schedule an hour comeback, and now I'm left with what to do, who to go to, and how to handle it, since it's obvious he's still working an abbreviated schedule and he's having trouble and his office knows it. Reading your link, gave me clarity, and also in helping me deal with what I'm struggling with at home. Thank you. I love this connect site. and the caregivers and mentors in it.

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@kjc48 Ohhh my gosh!! I'm sorry, that is awful in so many ways.

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