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)

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

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 oh my goodness! How terrible for you. I am so glad that it is clear what is going on with your periodontist. People do a lot of damage tto their own finances etc when their dementia is not as noticeable. But someone in the medical profession can affect so many other people’s life’s irreversibly! Trust your instincts. By all means stop and go elsewhere. I am rather frugal but do not cut any corners when it comes to de tal care because I have known people who have suffered terribly from ba dental work.

Not to mention that he yelled at you!

I am sorry that you are having to deal with that as well as the situation at home.
(Please consider reporting him to the relevant dental board or board of health. It is a heartbreaking thing to have to do, but he is danger to others).

All the best.

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Profile picture for memoriestomoments @memoriestomoments

@kjc48 oh my goodness! How terrible for you. I am so glad that it is clear what is going on with your periodontist. People do a lot of damage tto their own finances etc when their dementia is not as noticeable. But someone in the medical profession can affect so many other people’s life’s irreversibly! Trust your instincts. By all means stop and go elsewhere. I am rather frugal but do not cut any corners when it comes to de tal care because I have known people who have suffered terribly from ba dental work.

Not to mention that he yelled at you!

I am sorry that you are having to deal with that as well as the situation at home.
(Please consider reporting him to the relevant dental board or board of health. It is a heartbreaking thing to have to do, but he is danger to others).

All the best.

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@memoriestomoments Thank you for giving me clarity, as I keep thinking I overreacted. But I know I didn't. It was clear to me the dentist had no idea what was going on, didn't like what I was trying to tell him, couldn't easily get through his notes, and there was no assistant there to lead him, like what was done when I had the procedure done. I'm going to send his practice a note on Monday, to see if I can get the partner in the practice to do the procedure since they have the records and I paid (not covered by insurance, I'm sure they'll say no, and I'm going to have to find someone else. But you helped me here. It's amazing to me, what this disease does, and the lengths people will go to deny and situaton and allow (in this case) him to still practice. Yes, he yelled at me, but that goes hand and hand with the disease where they get angry, and attack due to their inability to understand what's going on. Very upsetting...but even with my husband's MCI, he also said find someone else. Thanks, again for reaching out.

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I may have responded @jemsm When they diagnosed my husband in August 2025 as well, I did reach out to my husband's brother and sister, and our blended family, so they understood confidentiality what was going on. The difference here is my husband didn't ask me to keep things quiet. I didn't tell anyone else - other than family - as it's private, and many people don't respond to it well. Case in point, even in a dialogue with my daughter in law today, she didn't want to deal with it and was unusually quiet on the phone. Yes, it does affect friendships, even family members in denial - but honestly, were they really good friends if they don't stand by you through the good and not so good times. I think many are just fearful of MCI, alzheimers, dementia, etc. It's the whole issue of mortality, and "could that happen to me." So, I think the most important thing is that the family knows and you quietly confide in them, until there is a time your husband is aware that they know. I think we can preserve our loved one's MCI - dignity, but at the same time, be respectful to the family by sharing the diagnosis. My husband and I are in a blended family, that's even trickier especially now with will planning, executorship, Power of attorney, etc. I thought we had the trust/wills clear, but I'm headed back to the attorney, now with my husband's recent diagnosis, and to make sure that if something happens to me first, my own son is the executor with my husband until he no longer has the faculties to do it if he progresses in the disease. So much to consider and so little I know.
Any help from any other MCI caregiver on this Connect site, with a blended family or even a biological one, please reach out. I could use the advice prior to going back to the attorney.

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Profile picture for kjc48 @kjc48

@memoriestomoments Thank you for giving me clarity, as I keep thinking I overreacted. But I know I didn't. It was clear to me the dentist had no idea what was going on, didn't like what I was trying to tell him, couldn't easily get through his notes, and there was no assistant there to lead him, like what was done when I had the procedure done. I'm going to send his practice a note on Monday, to see if I can get the partner in the practice to do the procedure since they have the records and I paid (not covered by insurance, I'm sure they'll say no, and I'm going to have to find someone else. But you helped me here. It's amazing to me, what this disease does, and the lengths people will go to deny and situaton and allow (in this case) him to still practice. Yes, he yelled at me, but that goes hand and hand with the disease where they get angry, and attack due to their inability to understand what's going on. Very upsetting...but even with my husband's MCI, he also said find someone else. Thanks, again for reaching out.

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@kjc48
One of the things that having a partner with dementia does is that it pushes us to hone our Advocacy skills. Yes, many people are helpful, but there are many times when people or systems are not set up to do what we or our Person needs, and we have to quietly but assertively get people to do what we know needs to be done. This is not always comfortable, so we need to practice and build up our inner warrior. 🙂

In this case, I just want to reflect to you that you deserve one of two things: 1. The rework of your periodontal work to be done by the competent partner in that practice, or 2. A full refund ( full because you will have to pay for a full redo somewhere else). There should be no other option pushed on you. They all know what is going on. You can very calmly let them know that it is clear to you as well and that this has created a serious situation that they need to address ethically. Remember that you are not asking for anything that is not owed to you per their licensing.

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Profile picture for kjc48 @kjc48

@141942 Do what I did. I wrote a note in the portal to the doctor. Told her upfront what was going on and my concern over my husband's memory loss. Asked if she could be seen with both of us in the room together so we discussed both of our ailments, that way it looked more like, a health check for both of us. We had mold in our house, and I was able to leverage that so I don't know if you have some "lead in" you can use, which helped me in getting my husband into the primary care. But it helped, and from that visit, that day, the doctor tested him, and suggested he been seen by a neurologist and explained gently, that memory loss at this age isn't uncommon, but she thought more might be going on, and an MRI and Pet scan with a neurologist would help determine if there was something to be concerned about.

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@kjc48 Thanks! That is exactly what I was thinking! And here we go!

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@141942 Good. Go get em' tiger! We're loaded for bear! From one caring care giver to the other....

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More like a kitty cat finding its way...

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Profile picture for marketlink @marketlink

My husband was diagnosed with MCI two years ago and he was reluctant to let anyone know as well. It didn’t help that his older family doctor told him not to pursue brain scans because once he got a diagnosis , he wouldn’t be able to travel? We found a wonderful psychologist who has her phd in neuro psychology and she’s guided us. I found out last month that the changes in his brain are vascular. He’s 73 and the specialist says he has the brain of an 80 year old. I’m 68. Also, his executive functioning is impaired which means his filter doesn’t work as well and I’m never sure what’s going to come out of his mouth.

I share this because even though it’s still MCI and he’s still functioning, the behaviour changes are becoming very noticeable. I privately started sharing with close friends and family because I needed the support. Our closest friends have been wonderful with him and I have a network now I can lean on or have a good cry with if I need it.

I’m trying to consider his needs through all of this but it’s a difficult journey. Last week he got frustrated when I was trying to help with his computer and he bit my elbow. Not hard but it was a first. It had my emotions spinning.

I think that trying to hide the diagnosis will be difficult for you as symptoms change. I don’t envy your decision but remember that you need support as well. Big hugs.

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@marketlink I am in the same boat as you. I am 67 and my husband is 70 and I am going through the exact thing you described. I just starting sharing with friends.

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Profile picture for rochrsalley81 @rochrsalley81

@marketlink I am in the same boat as you. I am 67 and my husband is 70 and I am going through the exact thing you described. I just starting sharing with friends.

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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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Thank you for your advise. I will definitely look at the YouTube you mentioned above.

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