MCI progression, radio silence wanted

so sorry for the situation.
There will come a time, maybe now, where Truth is more pressing than privacy. If his decline is obvious, making believe nothing is wrong is dishonest.
I personally never like to share my health issues. It's no one's business til it is.
There is no shame in health conditions.

This is a tough situation.

Given the proximity of the family, it will be tough to conceal his condition for very long, though. When (not if) they see him, they're going to know something is very wrong.

That, in turn, will lead to speculation on their part. They may wonder: Do you see the changes, too? Are you in denial? What exactly is wrong with him? Is he a threat to you?

Those who truly care about him may want to spend time with him before his condition worsens. Is it fair to deprive them of that opportunity?

You're probably aware of all this, and only you and your husband can decide. Have you ever discussed this possibility together?

Best wishes to you both as you go through this heartbreaking time.

@jemsm How difficult all this must be for you. Many other members have faced this same confusing time and they have started discussions. You can find these discussions by going to the top left-hand spot on this page.
If you would like to narrow the list, simply put your question in the search box and push your enter button. This will bring up a long list of similar discussions. You can read to your heart’s satisfaction!

@jemsm
You are in a difficult stage and seem to be handling it well. You are asking for some guideposts to help balance hisright to privacy vs. the need to have others understand new behaviors. I will share what I did and what drove that.

1. We did not ever have a discussion in which he asked me to not tell anyone. In part that is because we have rarely spoken about his condition. We have operated so that he does not feel like things are changing. I adjust what we do and how things get done so that he maintains his sense of wholeness as his capabilities decline.

2. I told a few people early on because I needed to be able to talk to someone about what was going on. Get ready, though. People will react in various ways and not all of them will be helpful. For example some friends kept saying things like "Oh everyone our age forgets a few things now and then!" I'm sure that they were trying to make me feel better but instead it made me feel like they were saying I was making it up, when I was trying to say "This is happening!", but saying it gently.

3. Over time I told more people as needed --privately and confidentially -- with the stated intent of making him comfortable as changes occurred and enabling people to feel comfortable with the changes too. At this stage I told a larger set of friends, and all of our families. (Consider this: Do you really need the added burden of keeping track of who knows and who does not?) In your case, yes, this would be going against his wishes. In our case, I have consistently acted based on what would be make his life happy, not what he might say he wants.

4. To help people who do not have experience dealing with someone with dementia, look up the very concise and helpful resources on Compassionate Communication from the Alzheimer's Association. e.g., https://www.sdalzheimersproject.org/content/dam/alzheimers/en/pdf/Compassionate%20Communication%20with%20the%20Memory%20Impaired_Alz%20Assoc.pdf

All the best,
Keep posting. We all benefit from the exchanges.

Hello:
My first thought was, have you put the wheels in motion to become his Power of Attorney while he is still cognizant enough to go forward (since he can't ethically/legally sign if he's not truly understanding the legal document)?
My husband's MCI progressed to dementia, and we did the POA while he was still in his MCI stage and not too bad off yet.
My husband also said he didn't want me sharing his diagnosis, however I told him I needed the support. I only tell folks if it's a need-to-know basis, and we told family right away.
Regarding your fear that he will lose friendships, you are spot on as I see this happening to my husband. Some friends are no longer reaching out, and if they did it would be like community service on their end, since he no longer makes conversation or engages (he just does 'report outs', and will answer questions).
All the best to you as you navigate this new normal. 🫂

If he has had a significant decline in cognitive abilities, this is likely more than MCI (and if a professional mentioned Lewy Body Dementia, there must have been a reason because that wouldn't be confused with MCI in most cases).

If he is having obvious and alarming symptoms, it is perfectly reasonable to inform family and close friends of what the reason for them is. You cannot just ignore symptoms that may be frightening or of some other concern to people who know him. You have to use your best judgment and you cannot rely at all on his "judgment". Certainly honor his wishes as best you can as long as they make sense, but you may have already reached a point where they don't make sense any longer.

Need a little more advice. Wife was asked, by her then doctor, to have some tests done because she was showing signs of dementia. Got mad as a hornet! Refused the test and refused to go back to that doctor. I got her an appointment with my doctor, gave him a heads up, and we both went to her appointment. He never mentioned that possibility, checked everything out, and said to keep on doing what she was doing. She has continued to get more confused with each day. Still drives but just to her beauty appointment. Terribly forgetful. And occasionally, like today, jumps my bones about absolutely nothing. How can I get her back to doctors so they can diagnose her?

@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.

@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.

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.