Will he hide it?

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vsanthony
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Will he hide it?

Post by vsanthony »

My husband is 3/4 with a strong maternal history of AD (mother and 2 of her male siblings, don't know about older generations). He also has regular phlebotomies for hereditary hemochromatosis (so iron levels are more or less under control); and is at genetic risk for CAD (although he's quite fit, and lipids and glucose aren't bad). He'll be 61 next January and doesn't want to talk about AD. On the other hand, he was recently asking if he should see a functional medicine doctor, so that he could get more extensive testing done. In other words, I'd say he's both terrified and ambivalent about dealing with it, and he doesn't want to admit how scary the prospect is. I'm typically the "health overseer" for the two of us, e.g. reminding him to get his colonoscopy, setting up key blood tests for him etc.): He's the grasshopper and I'm the ant. I need pointers on the best way to talk (or not talk) about it. I know that early diagnosis is encouraged, for a number of reasons. I'm just afraid that if he does (now or in the future) experience symptoms, he'll do his best to conceal it from me, which would be so counter-productive.
Should I just MYOB? How should I be handling this? Should we just be living our best lives and cross whatever bridges there are when we get to them?
Vicky, wife of Phil who is ε3/ε4 and has hereditary hemochromatosis.
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Re: Will he hide it?

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vsanthony wrote: Mon Sep 19, 2022 2:19 pm My husband is 3/4 with a strong maternal history of AD (mother and 2 of her male siblings, don't know about older generations). He also has regular phlebotomies for hereditary hemochromatosis (so iron levels are more or less under control); and is at genetic risk for CAD (although he's quite fit, and lipids and glucose aren't bad). He'll be 61 next January and doesn't want to talk about AD. On the other hand, he was recently asking if he should see a functional medicine doctor, so that he could get more extensive testing done. In other words, I'd say he's both terrified and ambivalent about dealing with it, and he doesn't want to admit how scary the prospect is. I'm typically the "health overseer" for the two of us, e.g. reminding him to get his colonoscopy, setting up key blood tests for him etc.): He's the grasshopper and I'm the ant. I need pointers on the best way to talk (or not talk) about it. I know that early diagnosis is encouraged, for a number of reasons. I'm just afraid that if he does (now or in the future) experience symptoms, he'll do his best to conceal it from me, which would be so counter-productive.
Should I just MYOB? How should I be handling this? Should we just be living our best lives and cross whatever bridges there are when we get to them?
Hi Vicky,

I hope you don't mind another reply from me; I'm the "also a wife who makes her husband's appointments" who replied to your post a few weeks ago. Phil's ApoE 3/4 status in itself would not be likely to put him at risk of a diagnosis of MCI at age 60 (or 61 in January). I don't blame him for not wanting to talk about Alzheimer's; since almost any type or form of cognitive impairment now or 100 years ago is often labeled "Alzheimer's", and many of us picture people with severe disabilities with that diagnosis, it isn't something most people want to consider.

But what Phil may want to consider, and what has helped me tremendously as someone with ApoE 4/4 and a "rich" family history of cardiac problems and Alzheimer's/vascular dementia, was deciding I wanted to know what my coronary arteries and my aortic valve and carotid arteries looked like. So I talked with my doctor and, over several years, paid a relatively small amount of money to get a coronary artery scan, a carotid scan and an abdominal aorta scan for about $ 150-200 for each. That news was good! I also volunteered for a clinical trial for healthy, cognitively normal people--so that I could hopefully be part of finding a strong prevention tool for high-risk people beyond lifestyle. I learned that some things are different (and still normal) for me-- remembering paragraphs verbatim is gone! And I still can't draw, but never could. But mostly I learned that I was okay--and went ahead with the trial, a great experience.

Maybe if Phil hears some good news about that, he would be more likely to be willing to visit with a neuropsychologist for some cognitive screening, or a neurologist to talk about an MRI--as a baseline for him as a 60 year old--similar to a colonoscopy.

Most importantly, I think it would help him to actually talk with people who have been where he is, wondering about getting tested, or what those tests involve, or what an MRI is like (noisy, but painless!) and to know that even if he has some mild issues with attention or memory, his performance may well still be in the normal range. And having known wonderful people with MCI, they and the research I've seen suggests that is often a very steady plateau, especially when the person is healthy in everyday life and has a strong support partner like you!

I think his feelings are valid and so should be validated, and yet so should yours--that you are seeing some differences that may be nothing, but would like to get some more insight. Phil may be more forgetful about things you've talked about simply because he's allowing himself not to pay such close attention, so a better question might be if he forgets things you did together, or things he's told you, or has more difficulty doing tasks that require planning, like finances, or remembering the plot of a TV series.

Hugs to both of you from someone who has been on both sides of the worry fence!
Nancy
4/4 and still an optimist!
vsanthony
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Re: Will he hide it?

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Thanks Nancy and as before, that answer is super helpful: In fact, he's having a CAC scan today! His brother who is also 3/4 and seeing a functional medicine doctor, persuaded DH to get a number of different tests: We got a lot of the basics (as also recommended on this site) and most things look pretty good. I will try to pursue the other two heart tests as well. As you say, establishing a baseline is a great idea. I may even show him your response, when he seems amenable. - Vicky
Vicky, wife of Phil who is ε3/ε4 and has hereditary hemochromatosis.
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Re: Will he hide it?

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vsanthony wrote: Mon Sep 19, 2022 2:19 pm Should I just MYOB? How should I be handling this? Should we just be living our best lives and cross whatever bridges there are when we get to them?
I'm 4/4 and I'll turn 62 years old next month. On our family history, father passed away from Alzheimer's and his father dealt with dementia. My other close relatives who made it to their 70s all developed dementia right on schedule.

Writing as a guy, I'd like to know everything I can about my body's vulnerabilities (and comorbidities) so that I can make the appropriate lifestyle changes. This includes exercise, diet, supplements, healthcare, more frequent dental flossing, cognitive activities, and any other modifications that seem to make sense. The risks (and the inconvenience) are more tolerable than what I watched my father go through.

Writing especially as a guy with the testosterone-poisoned mental and emotional maturity of a teen, I'd hate to live a life of blissful ignorance instead of being motivated to take care of myself. I'd hate even more to abdicate that responsibility to my family for additional reminders, even if the nagging is tactfully executed.

"Hiding it" doesn't work for long. (In my father's case, less than six months.) If your spouse doesn't already know this, there's a big difference between being distracted (losing a set of keys) and losing cognition (forgetting how to use a key). As cognition declines, the behavior changes are very noticeable to those who live with the person. In many cases it's as straightforward as suddenly being unable to follow a conversation or stopping a lifelong habit like reading.
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vsanthony
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Re: Will he hide it?

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Thank you Nords. We've talked about it enough that I think he'll acknowledge when/if he feels like the gaps are getting worse. Right now it seems like normal "lack of focus" forgetfulness, which I'm guilty of myself. He says he won't try to hide it if it gets worse - And as you say, I'll probably recognize it if it happens. I guess I'm remembering our experience with his mother - Who lived alone and could seem okay when we visited (just for a few hours e.g. dinner etc.) - Until in the middle of one night when my husband got a call that she was in her car in a town 20 miles away and didn't know where she was. Because she had never gone to doctors, she developed a rampant lung infection before we were aware of it, (among other things) and died within a year or so after that. I just want to be able to help him forestall it to whatever extent possible.
Luckily, he has always eaten well - Although a no-carb high fat and protein diet isn't going to happen (a la Breseden or Isaacson). He's physically active and takes care of himself so I'm optimistic - Just trying to be as proactive as we can be without driving him crazy. Like you, we remember what his mother and two uncles went through, and definitely want to improve on that experience, for all concerned.
Vicky, wife of Phil who is ε3/ε4 and has hereditary hemochromatosis.
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