How to help my 4/4 mom

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kayakmac08
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How to help my 4/4 mom

Post by kayakmac08 »

Hi all,

I'm just trying to crowdsource some advice on how to handle a situation that I'm sure many of you have faced: Your 4/4 parent is starting to show signs of cognitive decline. But they seem to be in denial. What do you do?

Important context (my mom's story): So Mom (age 61) and I both discovered that we're 4/4 about 6 months ago, thanks to 23andme. Around the same time, and also thanks to genetic testing, we uncovered the identities of my mom's biological parents (she was adopted at birth). Both are deceased. Mom's mom was diagnosed around age 67 and her dad around 75. I suspect both were 3/4s. Immediately, my mom and I acknowledged the writing on the wall, and have both started to take preventative measures. And here's where things get tricky....

My mom has declared that she wants to fight against her genes with all she's got. Already, she has started exercising and eating better (much of it being right in line with Bredesen's recommendations for E4s--emphasizing cardio, low simple carbs, low saturated fat, high monosaturated fat, avoiding alcohol, etc.). Currently, mom is in excellent shape--trim, vibrant, extremely active--and is very disciplined with what she does do.

However, she relies on me for virtually all of her information on how to pursue prevention. Although she has said she wants to, she doesn't do her own research at all, and she doesn't make any adjustments to her prevention strategies unless I suggest it. I'm not sure why she isn't more internally motivated. It doesn't really add up, since her level of discipline with what she does implement would suggest that she is internally motivated. But the dependence on me and lack of initiative suggests otherwise. I suspect that some factors in her lack of initiative are her confidence that she's doing enough, her lack of understanding of just how dire the writing on the wall actually is (or maybe denial), and her cognition starting to slip (I honestly think her lack of ownership is partly due to her becoming increasingly forgetful and scattered).

Which brings me to the heart of the issue. Even in the last 6 months, since she's been pursuing prevention, her short-term memory and executive functioning have started to dip noticeably. It's mostly lots of little things, like struggling to a rather odd degree with retaining the rules to an unfamiliar board game, forgetting important details in what we were just talking about, forgetting to follow through with tasks she said she was going to do, relying HEAVILY on written lists and planners (to the point that she carries them around and has Post-its everywhere, and it's kind of weird), and other small--yet truly noticeable--stuff. As I've spoken to more family members, everyone is like "Yeah, your mom's memory has been getting worse for years; I've wondered if something might be going on".

So this brings me to my dilemma. I want to do everything possible to help my mom, and I recognize in myself the capacity/inclination to go way overboard in this and be controlling and end up hurting our relationship. Yet I also don't want to chicken out and be unwilling to rock the boat a little so that she realizes she is in serious trouble and needs to ramp things up now, if she wants to preserve her mind for another 5 years, let alone 10 or 15.

My current plan is to suggest her to see a Neuro and get assessed so she has a baseline on her cognitive abilities. I'm not planning to tell her I see signs of decline yet; I figure I might as well let the Doc do that. I think this will provide the wake-up and motivation she needs, and will give me a basis for rocking the boat if that remains necessary. As far as after she gets her results from the Neuro, I plan to go ahead and let her depend on me for information on how to pursue prevention. Like many of you, I'm pulling heavily from the likes of Bredesen, Isaacson, Gundry, et al.

So I guess my questions are: Does this sound like a good plan? Anything you'd do differently? Any general musings/wisdom/recollections on how to navigate this type of situation?

As always, many thanks in advance to everyone who reads this, and especially to those who respond :)
  • 4/4 male, born 1989
  • Status discovery: 2020
  • Regimen: 14+ hr. fast/day; 200-300 min of mod-vig exercise/week; Med-esque diet; Supplementing with Trig DHA, B vits, D3
NF52
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Re: How to help my 4/4 mom

Post by NF52 »

Hi kayakmac08 from someone who could be your mom's older sister, at age 69 with ApoE 4/4 and adult children in their 30's who are ApOE 3/4. I'm going to give my perspective on several of your great questions and observations of your mom, since I know they come from a place of deep love and concern. I'll start by saying that I''m going to suggest changing your perspective to that of your mom, as follows:
kayakmac08 wrote:...My mom has declared that she wants to fight against her genes with all she's got. Already, she has started exercising and eating better... Currently, mom is in excellent shape--trim, vibrant, extremely active--and is very disciplined with what she does do.
Wow! This is great! Your mom is within normal weight, socially vibrant, active, and disciplined! Think of how few people that applies to of any age. Time to reflect back to her all these great attributes!
kayakmac08 wrote:... she relies on me for virtually all of her information on how to pursue prevention.... she doesn't do her own research at all, and she doesn't make any adjustments to her prevention strategies unless I suggest it. I'm not sure why she isn't more internally motivated.
Whoa! Speaking from experience and friendships with LOTS of people with ApoE 4/4, MOST of them find a place of emotional balance and acceptance of their risk which may include joining clinical trials, searching out news and research, playing competitive bridge, being a law professor or judge, running non-profits, taking care of grandkids, pets, gardens, reading, traveling, etc. etc. Notice how only some of those healthy, challenging activities involve "doing her own research"? Go back to your early post asking what people are doing and read what the healthy 80 year olds with ApoE 4/4 are doing--it's not spending hours a week on research.

To call her choice a sign of a lack of internal motivation is a negative attribution and violates one of the precepts of ethical work with people: They have the right to self-determination that is in accord with their values and preferences---especially when those are different than yours. Your mom isn't spending her days drinking, smoking, gambling, eating to excess and watching soap operas. She is instead "vibrant and active".
kayakmac08 wrote: I suspect that some factors in her lack of initiative are her confidence that she's doing enough...
Go with this thought,, because no one can tell you or her what is "enough"--is living well to age 75 enough, or does she have to make it to 85?
kayakmac08 wrote:...It's mostly lots of little things, like struggling to a rather odd degree with retaining the rules to an unfamiliar board game, forgetting important details in what we were just talking about, forgetting to follow through with tasks she said she was going to do, relying HEAVILY on written lists and planners (to the point that she carries them around and has Post-its everywhere, and it's kind of weird), and other small--yet truly noticeable--stuff. As I've spoken to more family members, everyone is like "Yeah, your mom's memory has been getting worse for years; I've wondered if something might be going on".
Your mom's inability to learn the rules of an unfamiliar board game is similar to me: I absolutely refused to learn the rules of bridge---mostly because I was completely uninterested in it 55 years ago in spite of my parents viewing it as essential social knowledge. Your mother might need memory cues like lists and planners--so does my husband, who is ApoE 3/3 and can remember every director who ever made a movie, and can call up classical music by the composer and the favorite orchestral arrangement--yet might ask when the kids are coming over.
We all have strengths and weaknesses in memory; your mom's attention may be more disrupted now if she's a little anxious about this new 4/4 news and so she's using post-its to help. I know of someone a few years older than your mom and also with ApOe 4/4 who recently edited a textbook. She also relies on lists for "home" stuff because her mental energy is filled with "work stuff" that she doesn't have to list.
kayakmac08 wrote:So this brings me to my dilemma. I want to do everything possible to help my mom, and I recognize in myself the capacity/inclination to go way overboard in this and be controlling and end up hurting our relationship.,,
PLEASE, take it from me--I do want to make it another 10 or 15 years or more.. But I also know that wanting something is not the same as making it happen. If your mother developed breast or colon cancer, I doubt you would blame her for not having prevented it. Think of AD as a long-term process of 20 years or more--it's not galloping if it's happening. You are the one struggling here, my friend, and you need to practice some self-care and give yourself permission to grieve this knowledge of her risk and your inability to take it away. Please don't tell her to see a neurologist; she's sure to know why you are asking. She has the ability to decide on her own that she wants to do this--and if she's interested, she can bring it up with her doctor.

Try for a month this experiment: Compliment her every time you talk with her about something you've seen, or she's mentioned: Her vibrant personality, her loyalty to friends, her interest in exercise classes (or whatever), her delicious food choices. ALL positive feedback without any "But...." or any suggestions. I think you may be surprised at how well she seems when you are just her loving son, not her researcher and prevention specialist.

Hugs from another imperfect mom,
NF52
4/4 and still an optimist!
JD2020
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Re: How to help my 4/4 mom

Post by JD2020 »

kayakmac08 wrote:
However, she relies on me for virtually all of her information on how to pursue prevention. Although she has said she wants to, she doesn't do her own research at all, and she doesn't make any adjustments to her prevention strategies unless I suggest it. I'm not sure why she isn't more internally motivated.
My parents won't do their own research either. It is very frustrating when dire issues are rising up, and they won't take their own steps to change the trajectory. When the caretaker parent finally gave me an opening to present other-than-mainstream approaches to my cognitively-ill parent, I pulled together all of the information I had been accumulating over the years. I made the case for the multi-pronged, personalized approach. Ultimately, caretaker parent shut down the conversation. I think he was hoping I would say something like "just take more Vit C".

Caretaker parent has developed his own serious health issues and asked me for my thoughts. I started doing some reading and then realized that the problem is way, way beyond me. I provided him with a referral to an integrative doc who had been referred so that he could explore different approaches. He did not follow up.

The point here is that they know that I am trying to age as well as I can, so they are looking to me instead of looking for themselves and consulting with experts. If I were able to navigate these issues by myself, I wouldn't pay my very expensive ReCODE doc for assistance. (BTW, she is totally worth the cost).

If I were in your mom's place, this is what I would want my children to say to me:

Mom, it seems like your cognition is starting to change. We do not have any more time to mess around. We have attempted to help you implement this program to the best of our abilities, but we are not doctors. There is a lot of testing that needs to be done to identify your specific vulnerabilities. Strategies need to be developed that are specific to you. We have to start now. Here is the number of a ReCODE doc. Let's call and make the appointment now.

Good luck. It is awful watching a parent age with this disease.
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kayakmac08
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Re: How to help my 4/4 mom

Post by kayakmac08 »

Thank you, both, for your perspectives! And I appreciate how you both emphasized different things. I have a lot to mull over here.
NF52 wrote: Try for a month this experiment: Compliment her every time you talk with her about something you've seen, or she's mentioned: Her vibrant personality, her loyalty to friends, her interest in exercise classes (or whatever), her delicious food choices. ALL positive feedback without any "But...." or any suggestions. I think you may be surprised at how well she seems when you are just her loving son, not her researcher and prevention specialist.
NF52, your advice is challenging but your reasoning is sound. I've staked too much of my own happiness on my mom's welfare, which is incredibly foolish given the fact that--AD or not--I have no control over what happens to her, and that, despite all my sound and fury, she's still going to die some day. So why steal from our the quality of our relationship to add to its quantity, when in the end, that quantity is going to be minimal anyway, in the grand scheme of things? Is the extra 10-15 years bought by prevention really worth the torment that would be created by my attempts to control things that I can't control?

Of course, there are complicating factors in all this that provide additional argumentation for why she should aggressively pursue prevention--such as her wanting to be around for as long as possible to care for my developmentally disabled sister, and enjoy marriage with her future husband (she's getting married this month, actually!), and to minimize the financial burden of AD on the rest of the family--but the point still stands that, at the end of the day, I must respect her freedom of choice, even if I disagree with them.

Fortunately, I think she genuinely cares about preventing AD, and I don't think it would be all that tough to persuade her to up the ante. But it's not the ultimate that I want to make it into.

And while I think her memory is indeed slipping, I don't want that to be a foregone conclusion. And I don't want to define her by that, even if the decline well underway. I like your suggestion of the month-long experiment. I'm already doing that internally, and want to apply it when I see her next.
JD2020 wrote: If I were in your mom's place, this is what I would want my children to say to me:

Mom, it seems like your cognition is starting to change. We do not have any more time to mess around. We have attempted to help you implement this program to the best of our abilities, but we are not doctors. There is a lot of testing that needs to be done to identify your specific vulnerabilities. Strategies need to be developed that are specific to you. We have to start now. Here is the number of a ReCODE doc. Let's call and make the appointment now.
And JD2020, my heart goes out to you. The feeling of helplessness that is rather new and largely abstract for me is much more tangible for you. I hope the the caretaker parent you mentioned becomes more open to the possibilities of pursuing an integrative, mutli-pronged treatment approach. And I hope that you are able to find more comfort and peace in the midst of the situation you guys are in. It must be so hard to be seeing and feeling what you are.

I think having frank discussions with your parent and/or the caretaker about "Hey, this is my honest perspective on the situation, and what I think you should do", tempered with, "But it's your choice and I respect that and love you regardless" is a worthwhile formula. That's the basic pattern I want to have with my mom, although I want to err more on the laissez faire side, given my tendencies.

I really wish I knew of some good literature on this sort of thing! Surely, there must be loads of books written on the subject.
  • 4/4 male, born 1989
  • Status discovery: 2020
  • Regimen: 14+ hr. fast/day; 200-300 min of mod-vig exercise/week; Med-esque diet; Supplementing with Trig DHA, B vits, D3
JD2020
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Re: How to help my 4/4 mom

Post by JD2020 »

kayakmac08 wrote: I think having frank discussions with your parent and/or the caretaker about "Hey, this is my honest perspective on the situation, and what I think you should do", tempered with, "But it's your choice and I respect that and love you regardless" is a worthwhile formula. That's the basic pattern I want to have with my mom, although I want to err more on the laissez faire side, given my tendencies.
That discussion happened a few years ago. I could be wrong...and someone please feel free to jump in and let me know if I am...but I think that there comes a point where a person can't do the program. For example, this recently published study

https://www.medrxiv.org/content/10.1101 ... .full-text

the exclusion criteria includes "inability to exercise". At some point, a person who hasn't exercised for decades will become too fragile to do the exercise that must be done to create the BDNF and realize the other benefits of exercise. At 58, I feel like I am exercising to prevent fragility one workout at a time. I can't even imagine what it feels like to be 80+ and not have exercised since I was 50ish.

There is a lot that I could write about the resistance in my family, but really, why?

And while I think her memory is indeed slipping, I don't want that to be a foregone conclusion. And I don't want to define her by that, even if the decline well underway.

My doc told me that it is much easier to prevent (what I am trying to do) than to reverse. Therefore, I assume that it is much easier to reverse early in the game than later. My very best wishes to you and your mom.
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