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MCI progression, radio silence wanted

Caregivers: Dementia | Last Active: Feb 24 7:30pm | Replies (26)

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@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.

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Replies to "@jemsm You are in a difficult stage and seem to be handling it well. You are..."

@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.