New to APOE4. Signed up for ReCODE Report for my wife.

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Toddbish10
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New to APOE4. Signed up for ReCODE Report for my wife.

Postby Toddbish10 » Sun Feb 11, 2018 6:40 pm

Hi.

My father was diagnosed with Alzheimer's at age 70. I am 66, and my wife is 3 days older than I am.
We have both submitted our 23AndMe tests and are awaiting the results. As of now, I cannot remember some words or names at times, but they eventually come to me. It's an annoyance, but not debilitating. I am engaged in learning to speak Spanish fluently, learning the piano, going birding with groups, volunteering in 2 different organizations, exercising 150 minutes per week, and playing XBOX.

My wife retired over 2 years ago from a job where she was the Director of an agency with over 1000 employees. She was quite literally the center of attention. After retiring, she was suddenly alone, and became quite depressed for the first year. The second year she is better, but still somewhat depressed. She has thus far refused to engage in any activity/job/volunteering outside the home. She cleans a lot and spends a great deal of time with our daughter and 2 grandkids, and her sister. She has not started anything "new". Most importantly, she, and I, have gotten into the habit of drinking quite a bit each evening, as of about 2 months ago, the equivalent of about 6 glasses of wine a night. Over the last year, I and others have seen a significant decline in my wife's mental functioning, mostly being easily confused and not being able to remember words, such as vacuum cleaner.

We have taken 3 approaches:
1) We are cutting back on the drinking with a goal of 1-2 glasses of wine per night. Currently, we are at 3.5. And she has shown some improvement.
2) We saw her general practitioner and she really stressed curbing the drinking, albeit slowly. After giving my wife a brief memory test, the doctor has referred her to a hospital neurology clinic for full evaluation. We are waiting to get an appointment.
3) I have signed her up for Dr. Bredesen's ReCODE Report, which gave us the name of a close MD practitioner nearby. We have spoken with them and are waiting to get an initial appointment.

My chief concern at this point is that my wife is furious at me for doing anything! Especially telling our daughter was is going on. She wants to keep it a "secret" from everybody. And she kind of hates me for lining up these evaluations. Can you offer me any advice? Any help whatsoever? I'm afraid she may sabotage any therapeutic inventions that are prescribed, including the reduction in drinking.

Thank you!

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Jan
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Re: New to APOE4. Signed up for ReCODE Report for my wife.

Postby Jan » Sun Feb 11, 2018 8:00 pm

Welcome, Toddbish 10. I'm so sorry you've experienced these frightening developments in such a short time after your wife's retirement. I'm sure you were anticipating a happy new phase of life, and now find that some of those plans may be in jeopardy.

In my thinking, you've made excellent choices to address the problems your wife is experiencing. As you have confided in your daughter, she may be your strongest ally for at least some nominal compliance on the part of your wife. And if we get nominal compliance to begin with, that might have a beneficial effect on the lethargy she seems to be experiencing. Could continued time with her grandchildren be used as a motivating factor, perhaps by reminding your wife of the milestones to come in their lives?

I have not personally dealt with this particular situation, but I know that we have members on the site who have. I am sure they will chime in with recommendations from personal experience soon.

Let's put into a separate category the steps you are taking to ensure your own future well being - I give you an outstanding. Spanish, piano, birding, volunteering, exercising, even Xbox - just outstanding. Don't stop them! (Remember the airplane analogy - we put on our own oxygen mask first, before we attempt to help anyone else.) I agree with the doctor about the alcohol.

Did the doctor evaluate your wife for depression also? Depression can have an insidious start. If your wife enjoyed her position as the center of attention, she may have been upset about losing that position, much longer than even she realized.

Good luck to you, please continue to use our site for support and questions!
mrc cfnc fmchc
IFM/Bredesen Reversing Cognitive Decline training 2017
E2/E2
What is, is. What is, can be changed.

anne from california
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Re: New to APOE4. Signed up for ReCODE Report for my wife.

Postby anne from california » Sun Feb 11, 2018 11:24 pm

I have no special expertise and haven't been on these forums long, but several things about your note resonated with me, Toddbish. I am younger than you and your wife, and I work for a small company, but I'm in a position of leadership and high accountability, and feel every day the stress of my position and how many things depend on me, as well as what percentage of the company. If I think too much about it, it's overwhelming. I fantasize often about retiring to (finally) pursue some other creative endeavors more seriously than I can now, or quitting to work someplace where I'm a less important cog in the wheel. But as much as I dream about that stuff, I also love my job, and how valuable I am there, and how much flexibility I have over my schedule and my work projects, and how being out in the world forces me to be, well, out in the world and ON it. I believe my job helps keep me motivated and engaged. I worry sometimes that if/when I leave my job, inertia could take over. I wouldn't have to be as sharp or as organized, and the occasional bit of tip-of-the-tongue, the-word-escapes-me I experience now (since menopause) might graduate into something much scarier. Also, while there might be some stress relief in leaving my job, there also might be isolation and loneliness and too much down time, and I worry about brain stagnation and lack of follow-through on my own part. Somehow, when things can happen any time, they also can happen never. That novel I want to write might disappear in "easier" things, like cooking and cleaning and hanging out with people who don't challenge me.

It does sound like there's something going on with your wife's cognition if her physician referred to a neurologist. I'm curious whether she showed any signs of cognitive decline while she was still working. If not, is it possible she's simply understimulated and bored and unmotivated, and has spiraled down too far into depression and/or inertia to pull herself up and out and into anything new?

Add to that the alcohol, which seems significant. When you say six glasses of wine, do you mean EACH? I know for me, one glass of wine in the evening--especially the older I get--hinders my sharpness at the time, and more than one (even one and a half) cuts my mental speed the next day. So for me it's easy: I rarely drink, and never more than one glass. I can't even imagine six glasses. I truly believe it might kill me! Her resentment at being evaluated kind of goes along with an alcoholic's resentment of, really, anything that threatens to impede the ready access to alcohol. (I'm not suggesting she's an alcoholic, although I'm also not afraid of the term—I'm married to a recovering alcoholic of 20-plus years, and recall quite vividly how a Mack truck bearing down wouldn't have budged my husband from his vodka till the last imaginable second. I just wonder if she's particularly attached to the alcohol and therefore reluctant to engage in anything "official" that might suggest she give it up.)

Seeing a Bredesen practitioner sounds like a great idea, no matter what the root cause of her cognitive decline. Some simple changes might really help too. But I know from experience how hard it is to get someone else to do what you know they should do, and how frustrating it is to watch them NOT do it, especially when it seems like the more you want them to, the less motivated they become. I'd love to know what Dr. Bredesen would say about a reluctant patient. Can they be brought along?
57 years old, ApoE 3/3, mother and grandmother have/had late-onset dementia, eager to save brain and optimize health.
Thank you all for sharing your knowledge!

NF52
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Re: New to APOE4. Signed up for ReCODE Report for my wife.

Postby NF52 » Mon Feb 12, 2018 12:09 pm

Welcome Toddbish,

My husband and I are also 3 days apart in age--always easy to remember both birthdays and ages! (His is first, so for 3 days I can tease him about being a year older.)

Like your wife, I retired from a job with a high level of responsibility (big fish in a relatively small pond), and for several years felt the need to take part-time positions, go back to school, check job postings. My guess is that your wife finds great comfort in cleaning,
because it gives a sense of order and tasks completed (especially if she was brought up like me to view cleaning as an almost sacred duty of women!) Spending time with her sister, your daughter and two grandkids is certainly helpful, especially if your daughter can steer her to have an important role in making cookies, teaching them how to play a game, going for walks to see new places.

As for her being angry about testing and new doctors, it may help her to know that some of the women on this site (like me) are her age and also taking those same tests (MRI, PET scan, memory tests) as part of clinical studies so that we can help scientists figure out how to keep people healthy longer--including our kids and grandkids. So she's not just doing it to please you, she's doing it to help her family in the long run. (Just remember to ask for music, or even to ask for some valium if she's claustrophobic, if she has an MRI.)

I also think it's helpful to add something desirable while you're subtracting something less desirable (i.e. wine). Can you and your wife go on day trips to museums, or evening concerts, or travel further afield, so that the habit of drinking after dinner is replaced with something else? Does she have hobbies from decades ago that she could re-visit?

Like Jan, I think it's wise to consider asking either her family doctor or the memory clinic to consider the possibility of depression. Researchers have found an association between untreated depression and the development of mild cognitive impairment. As someone who likes to be "in charge", I wonder if what she wants to keep secret is that she has "subjective memory complaints" or "subjective cognitive complaints" that strike fear in her deepest sense of self-worth. She might need you to validate her concerns that she's not herself, that the family will look at her differently, that she's no longer in control of decisions like she was at work, or whatever-- paired with reassurance that she still has many well-honed skills, and that you're partners in this journey, wherever it takes both of you.

And know that we're also available to be supports on the journey.
4/4 and still an optimist!

Toddbish10
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Re: New to APOE4. Signed up for ReCODE Report for my wife.

Postby Toddbish10 » Tue Feb 13, 2018 7:50 am

Thanks so much for your quick reply, Jan! Very reassuring to hear!



Jan wrote:Welcome, Toddbish 10. I'm so sorry you've experienced these frightening developments in such a short time after your wife's retirement. I'm sure you were anticipating a happy new phase of life, and now find that some of those plans may be in jeopardy.

In my thinking, you've made excellent choices to address the problems your wife is experiencing. As you have confided in your daughter, she may be your strongest ally for at least some nominal compliance on the part of your wife. And if we get nominal compliance to begin with, that might have a beneficial effect on the lethargy she seems to be experiencing. Could continued time with her grandchildren be used as a motivating factor, perhaps by reminding your wife of the milestones to come in their lives?

I have not personally dealt with this particular situation, but I know that we have members on the site who have. I am sure they will chime in with recommendations from personal experience soon.

Let's put into a separate category the steps you are taking to ensure your own future well being - I give you an outstanding. Spanish, piano, birding, volunteering, exercising, even Xbox - just outstanding. Don't stop them! (Remember the airplane analogy - we put on our own oxygen mask first, before we attempt to help anyone else.) I agree with the doctor about the alcohol.

Did the doctor evaluate your wife for depression also? Depression can have an insidious start. If your wife enjoyed her position as the center of attention, she may have been upset about losing that position, much longer than even she realized.

Good luck to you, please continue to use our site for support and questions!

Toddbish10
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Re: New to APOE4. Signed up for ReCODE Report for my wife.

Postby Toddbish10 » Tue Feb 13, 2018 8:04 am

Anne, thanks a lot for your reply. I hear you!

So far, my wife is going along with the alcohol reduction program very well. Hoping she will keep up this enthusiasm when we get to 2, then to 1.5 glasses of wine per night.

She has had medication for depression in years past, but currently is not interested in trying that again right now.

We have gotten her first appointment with a ReCODE doctor for Feb 26! Very excited about this! Will report on this later...


anne from california wrote:I have no special expertise and haven't been on these forums long, but several things about your note resonated with me, Toddbish. I am younger than you and your wife, and I work for a small company, but I'm in a position of leadership and high accountability, and feel every day the stress of my position and how many things depend on me, as well as what percentage of the company. If I think too much about it, it's overwhelming. I fantasize often about retiring to (finally) pursue some other creative endeavors more seriously than I can now, or quitting to work someplace where I'm a less important cog in the wheel. But as much as I dream about that stuff, I also love my job, and how valuable I am there, and how much flexibility I have over my schedule and my work projects, and how being out in the world forces me to be, well, out in the world and ON it. I believe my job helps keep me motivated and engaged. I worry sometimes that if/when I leave my job, inertia could take over. I wouldn't have to be as sharp or as organized, and the occasional bit of tip-of-the-tongue, the-word-escapes-me I experience now (since menopause) might graduate into something much scarier. Also, while there might be some stress relief in leaving my job, there also might be isolation and loneliness and too much down time, and I worry about brain stagnation and lack of follow-through on my own part. Somehow, when things can happen any time, they also can happen never. That novel I want to write might disappear in "easier" things, like cooking and cleaning and hanging out with people who don't challenge me.

It does sound like there's something going on with your wife's cognition if her physician referred to a neurologist. I'm curious whether she showed any signs of cognitive decline while she was still working. If not, is it possible she's simply understimulated and bored and unmotivated, and has spiraled down too far into depression and/or inertia to pull herself up and out and into anything new?

Add to that the alcohol, which seems significant. When you say six glasses of wine, do you mean EACH? I know for me, one glass of wine in the evening--especially the older I get--hinders my sharpness at the time, and more than one (even one and a half) cuts my mental speed the next day. So for me it's easy: I rarely drink, and never more than one glass. I can't even imagine six glasses. I truly believe it might kill me! Her resentment at being evaluated kind of goes along with an alcoholic's resentment of, really, anything that threatens to impede the ready access to alcohol. (I'm not suggesting she's an alcoholic, although I'm also not afraid of the term—I'm married to a recovering alcoholic of 20-plus years, and recall quite vividly how a Mack truck bearing down wouldn't have budged my husband from his vodka till the last imaginable second. I just wonder if she's particularly attached to the alcohol and therefore reluctant to engage in anything "official" that might suggest she give it up.)

Seeing a Bredesen practitioner sounds like a great idea, no matter what the root cause of her cognitive decline. Some simple changes might really help too. But I know from experience how hard it is to get someone else to do what you know they should do, and how frustrating it is to watch them NOT do it, especially when it seems like the more you want them to, the less motivated they become. I'd love to know what Dr. Bredesen would say about a reluctant patient. Can they be brought along?

Toddbish10
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Re: New to APOE4. Signed up for ReCODE Report for my wife.

Postby Toddbish10 » Tue Feb 13, 2018 9:13 am

Thank you very much for your reply, NF52. It means a lot to me. I especially like your suggestion about getting my daughter involved through the kids - helping my wife do new things. I have emailed my daughter the link to this forum!

And I will re-visit the depression aspect with my wife. She has had medication in the past, but is resisting it now.

Thanks again!




NF52 wrote:Welcome Toddbish,

My husband and I are also 3 days apart in age--always easy to remember both birthdays and ages! (His is first, so for 3 days I can tease him about being a year older.)

Like your wife, I retired from a job with a high level of responsibility (big fish in a relatively small pond), and for several years felt the need to take part-time positions, go back to school, check job postings. My guess is that your wife finds great comfort in cleaning,
because it gives a sense of order and tasks completed (especially if she was brought up like me to view cleaning as an almost sacred duty of women!) Spending time with her sister, your daughter and two grandkids is certainly helpful, especially if your daughter can steer her to have an important role in making cookies, teaching them how to play a game, going for walks to see new places.

As for her being angry about testing and new doctors, it may help her to know that some of the women on this site (like me) are her age and also taking those same tests (MRI, PET scan, memory tests) as part of clinical studies so that we can help scientists figure out how to keep people healthy longer--including our kids and grandkids. So she's not just doing it to please you, she's doing it to help her family in the long run. (Just remember to ask for music, or even to ask for some valium if she's claustrophobic, if she has an MRI.)

I also think it's helpful to add something desirable while you're subtracting something less desirable (i.e. wine). Can you and your wife go on day trips to museums, or evening concerts, or travel further afield, so that the habit of drinking after dinner is replaced with something else? Does she have hobbies from decades ago that she could re-visit?

Like Jan, I think it's wise to consider asking either her family doctor or the memory clinic to consider the possibility of depression. Researchers have found an association between untreated depression and the development of mild cognitive impairment. As someone who likes to be "in charge", I wonder if what she wants to keep secret is that she has "subjective memory complaints" or "subjective cognitive complaints" that strike fear in her deepest sense of self-worth. She might need you to validate her concerns that she's not herself, that the family will look at her differently, that she's no longer in control of decisions like she was at work, or whatever-- paired with reassurance that she still has many well-honed skills, and that you're partners in this journey, wherever it takes both of you.

And know that we're also available to be supports on the journey.


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