4/4 mom is showing signs. Now what?

[kayakmac08]

Hi all,

My 4/4 mom, 62, is now showing enough signs of memory loss that my stepdad and Mom's best friend are planning to raise their concerns and urge my mom to seek medical attention. I've been talking to my mom for the last 2 years about AD prevention (although not raising concerns about her actually being on the path toward AD, although I suspected that was the case) and she has employed some of the lifestyle changes we've discussed. At this point I'm wondering what next steps should be, and what my role should be in supporting her moving forward. I guess my question is: What do you do once the MCI/AD is starting to show itself in a loved one and you were already beating the prevention drum? What's next? I think a cognoscopy is needed, but not sure what else in the realm of diagnostics or standard of care treatment should be recommended. And how should those things be balanced with continued (or even intensified) pursuit of functional medicine strategies? She has some glaring "holes in her roof" - most notably in the realms of exercise and cholesterol management. Obviously it's not my ultimate responsibility and what she does is totally her choice and I'll support her emotionally no matter what. But wondering about the most efficacious path forward with someone who's already starting to become symptomatic for AD. I think it's plausible that reversal (or at least stabilization or slowed decline) is possible, but I also want to spend my relational capital wisely and not bombard with suggestions or torment with false hopes. Any advice is appreciated. Would love to hear from folks who have been through something similar.

Best,
Justin

[JD2020]

Would love to hear from folks who have been through something similar.

Hey Justin,

I have been through something similar. My parents are not/were not open to this. I tried repeatedly as information became available. They would either tease me about thinking that I am going to live forever or tell me that they will discuss the issue with their (traditional, I will only do what the FDA and CDC tell me to do) doctors. This effort began in earnest in 2012. I had an opportunity in 2018 to really present my case for making recovery first priority, and I was roundly shut down. What I want to suggest to you is this: do your best, but prepare your heart. If she is not willing to change everything and be 110% committed, then there is nothing that you can do.

What I hope my children would say to me in your situation is this: Mom, we have known that you are at risk for cognitive decline for a very long time. You are starting to change. It is time to make this effort your absolute first priority. We are all in for you, if you can also be all in for you.

Even though I am aware of the issue and doing my best in this program, I could see how a person could start to change and not realize it.

And if she is willing to make the effort, I think the most important step is to get with a doc that knows ReCODE. I never could have identified the holes in my own roof without the help of my brilliant doctor. She (and the testing and the supplements) are so expensive, but I would be floundering without her guidance.

Good luck!!!

[NF52]

Hi all,

My 4/4 mom, 62, is now showing enough signs of memory loss that my stepdad and Mom's best friend are planning to raise their concerns and urge my mom to seek medical attention..I think it's plausible that reversal (or at least stabilization or slowed decline) is possible, but I also want to spend my relational capital wisely and not bombard with suggestions or torment with false hopes. Any advice is appreciated. Would love to hear from folks who have been through something similar.

Best,
Justin

Hi Justin,

I've been where you are with my own mother, although she was older than your mother and I was older than you. It's a bit like being in a sudden blizzard and you've lost all your landmarks. Recognizing that you can't see very far ahead and so will have to "flex" with your ideas will help you help her and your step-dad.

I also know a bit about where your mom is-since I also have ApoE4/4 and discovered it when I was your mom's age. I'm now 70 and my cognitive skills are still good. But I and friends with ApoE 4/4 know we would have done many things differently 30 years ago and we're glad our kids are doing some things we didn't. And while we're each doing our best now, in our own way, none of us has filled every "hole in the roof". We want our kids to know that we want to make this work--and we worry that they will blame us if we don't somehow avoid the high genetic risk of ApoE 4/4 that we only recently learned about. Your mom may also be afraid to admit to worries for fear of the future or being "a burden."

The GOOD news is that asking questions and pursuing answers, especially if you are there as a support to your mom and your step-dad, can include both functional medicine and diagnostics. No neuropsychologist or brain researcher would say "don't worry about exercise or about getting enough protein and healthy fats". I know several people with MCI who have been stable for years, and some who have reversed it when they dealt with sleep apnea, stress and other issues. And exercise, even stretching and mild aerobic exercise, has recently been shown in one study to improve the "executive skills" of planning, organizing, etc. in people with MCI.

It sounds like your step-dad and/or her best friend have shared with you their concerns, which means they trust you and your reasons for wanting to help your mom. So given that your mom has 3 wonderful people in her corner, here's some thoughts from someone (me) who could be in your mom's place at some point:

1. Even people with cognitive impairment have the right to make decisions based on their beliefs, values and preferences. I know several people with MCI and mild AD, and they believe strongly in making their lives purposeful--in their own ways. Having a conversation with your mom on what she looks forward to, or hopes to do, or loves to do, will give you ideas to motivate her to "join your friend as a stretching class at the Y so you can enjoy that trip to Italy." Or "Take a scrapbooking/painting/cooking/etc class with your friend ____ since she misses seeing you." That way, you're focusing her outward, not inward.

2. The three of you share a concern, but don't mention whether you mom shares this concern, or is aware of any changes. If she is, it's easier for someone, maybe her husband to say "You've talked about being frustrated that you can't remember conversations. I think there might be some things we could do abut that. Let's make an appointment with (her primary care provider or functional medicine provider) so we can both talk about this and see what they think."
Her doctor can order tests that insurance will (mostly) cover to rule out common issues and can also administer a quick memory screening test, if your step-dad alerts the office ahead of time to include that. If your mom does have difficulty on a memory screening test at her doctor's office, they would likely be a good source to suggest a regional memory clinic that provides a team approach with a nurse, neuropsychologist, and neurologist, among others.

3. People with ApoE 4/4 are also at risk for coronary artery and carotid artery issues which, if present, could contribute to brain fog. Women tend not to be diagnosed with CAD (coronary artery disease) or CVD (cerebral vascular disease) until they have a heart attack. If her doctor is told of her ApoE 4/4 status, they could refer her to a cardiologist for a workup.

4. You might want to talk with your step-dad to see if her best friend can enlist others to spend MORE, not less time with her now. She may have spent the last 2-3 years of COVID cooped up inside and benefit greatly from a routine, for example, Tuesday brunch with one friend, Thursday walk with another and Saturday bowling, swimming, scrapbooking, etc. etc. with a third. It also gives your step-dad some respite, and time for him to be sure he's taking care of his own physical and mental health.

You are part of a wonderful family support system--that's one of the best "techniques" you can offer your mom. Keep us posted.

Nancy

[TLS]

Hi Justin,
I am in the same boat as you. My Mom started having issues in 2015 around the age of 68. I approached her at that time to see if she would consider going to see an alternative doctor to which she flat out said she would NOT be doing any of that. I had to respect her wish and then went down the path of trying other things to help out.

Long story short, she progressed and was diagnosed with MCI 2 years ago. At this point she is much more open to accepting help. I still need to work with her at a level that she is interested in.

Here is what helped me and may offer you some ideas:

• I read both Bredesen books and listen to as many podcast interviews as I can to get ideas

• I switched up doctors and got one of her medicines adjusted because the does was too strong

• I had the neurologist order heavy medal and other blood tests to see if there were issues with her B12, zinc/copper ratio, etc. They were very happy to run those tests.

• I agree with the recommendation above - socialize as much as possible! COVID isolation was really bad for my Mom

• Go at things indirectly. Some people hate exercising. Instead ask her to join you for a walk at a park, don't call it exercising.

• I slowly added supplements, one at a time to make sure she didn't react to any. Basic ones that are recommended in the book and are very well studied.

• Learning new things can be hard. They got a new microwave and she couldn't figure out how to use it so I made instructions and put them next to the microwave. She now is able to use it without the instructions. Same thing for other new appliances they just purchased. (I don't give up)

It's hard to give other people advise, especially unsolicited, and get them to listen. Be creative. I use all my influence skills, such as humor, or I tell 'stories' about 'other people' to make a point, and most of all, I try to listen. Maybe asking her some questions, ask her what it is like, what her frustrations are. She might be feeling very fearful and not ready to face the future. People want to feel heard and this might help you understand things from her perspective so you can use your influence skills based on what you hear from her. I asked my mother what she was willing to do and we went from there. At that time, she was open to getting a new camera and using it to take photos. That was a win! Minor but a win.

My father told me she's actually been doing better. I don't know what made the most impact and suspect it is all of the above. Socializing definitely helps.

You are a wonderful son! The fact that you reached out shows you care deeply.