Tell my children or not?

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Fc1345linville
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Tell my children or not?

Post by Fc1345linville »

I am a 73 year old father of three male children, ages 38, 41 and 43. My wife and I have seven grandchildren. Two years ago I literally stumbled upon my APOE4/4 status after seeking ancestral info from 23andme. Since then I have been reading about AD, greatly assisted by joining this forum earlier this year. While I have discussed my 4/4 status thoroughly with my wife, I have not done so with my children. All three children live very healthy life styles.

So, my ethical dilemma is whether to tell them what I know. None of them show any symptoms of early AD, and neither do I. Having wrung my hands about this for almost two years, not a day goes by that I do not worry about what could be around the corner for me, or way down the block for them. At this point, I am sticking with silence, but there are a lot of intelligent people out there in the forum who have informed opinions I would be interested in hearing. Thanks in advance for sharing.
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Re: Tell my children or not?

Post by circular »

Hi Fc1345linville,

This is such an important question and I wish I had an easy answer to follow. I will wait like you to hear what others have to say and offer here my morning stream of consciousness on the issue.

I can understand how your 4/4 status has planted fear in your mind, while I'd like to underscore how incredibly hopeful it is that you are symptom free at 73 and a member of this group. You are in a position to either not get AD at all, like some 4/4s, or to delay and ameliorate the effects of it substantially. I hope you find Dr. Bredesen's work reassuring as I and many others of us do.

I suppose your question may depend in part on each child and how they might take such information. One argument towards sharing the information with them is that it provides great support for the healthy lifestyles they're already choosing, and the fact that you are 73 with no symptoms and 4/4 is also so encouraging. Should they ever begin to slack off their healthy ways they might reconsider knowing they have at least one 4. It would put them on notice to follow the developments so they can be on top of new, sound preventive measures right away. They might even currently decide to take some simple additional steps like adding curcumin to their routine. In other words, the information can be delivered in a very good and hopeful context. This may depend in part on how hopeful you are feeling, and I imagine that may change from time to time.

On the other hand it can be argued that even though Dr. Bredesen is seeing good results using his protocol, it doesn't yet fulfill evidence-based medicine standards. If your children approach healthcare strictly from an evidence-based perspective (and I think there are legitimate reasons people do so), then while his approach seems like great news to many of us at this juncture, it may do nothing for someone more wedded to waiting for scientific proof of safety and efficacy in large numbers over a long period of time. That leaves one with knowledge of their genetics and no clear direction, not because there aren't people offering some good guidance that's considered safe from the, albeit often ambiguous, cutting edge, but because these personality types choose not to consider it.

I am having the same question regarding whether to tell my parents. I suppose, following my own reasoning, since they are absolutely, and I think sometimes unhealthily, wedded to following conventional doctors decisions, and completely ignoring anything I suggest might be worth exploring, maybe it's best I not tell them. It will just be another case of them seeing me as a flake because their doctor says something else or hasn't said what I say, and it doesn't coincide with the perspective of the medical "establishment". I have always been future minded, so I am comfortable with ambiguities on the cutting edge. My parents are not that way, so I guess I should respect that and not create fear in them that they will see as unactionable? Or would it nudge them to make healthier diet and lifestyle decisions which they are not doing even within conventional standards? I've even wondered if I should be telling cousins who share the same family members who've had AD in the past.

Here's the Alzheimer's Association's formal statement as to whether people should be tested, which is a similar question https://www.alz.org/national/documents/ ... esting.pdf This document takes the conventional and to some extent reasonable view that there's nothing [strongly evidence based] to recommend for prevention, so there's no use in genetic testing for ApoE, or, that implies, informing another of their carrier status. One would want to balance this with whether they think, or their family member would think, that document is out of date, given what some leading neurologists are saying and the whole emergence of epigenetics pointing to lifestyle changes turning genes on and off. Is the future here now in this regard for AD, or are we still building a specific case?

The association does raise the important point that if one knows or finds out they have E4, they should not put it in their medical record unless they have all forms of insurance in place that they could want. (Well I embellished a bit on their statement there.) While currently health insurers can't consider an applicant's genetics in medical underwriting (could that law ever change?), insurers can still do so when underwriting life, long-term care and possibly other types of policies (annuities? disability?...). This leads to another important consideration whether to tell your children, and it's complex. Will they want to incorporate long-term care planning into their long-term financial plans? Long-term care planning is very complex and can involve private funding, long-term care insurance, or a combination. If long-term care insurance is even part of one's plan, buying young, even at your children's current ages, is important both to getting coverage (what other future conditions could rule out coverage in underwriting?) and to getting a lower premium. You can search the forum for earlier discussions of this.

While my LTC insurance is costly and I got it in my late 40s, now in my early 50s I would no longer qualify because of musculoskeletal issues ... just to give you an idea of how this can play out. I will break even on total premiums paid in within about a year of needing care. While I hope it's a waste of money, trading the cost of one-year of care for potentially many years of coverage is a choice I've been willing to make. Privately paid for care (including LTC insurance) is often much better than care provided through public funding after one's funds have run dry.) I'm now at high risk of needing care for multiple health reasons, something I'd never imagined at your children's ages when I, like them, was living a health life. The argument here isn't for having long-term care insurance, a very individual matter, but for incorporating long-term care risk into one's long-term financial planning. If your children are or will be focusing on long-term financial planning, will they want to incorporate knowledge of their status? Most people plan for just two years of long-term care needs. Will that be sufficient? If one plans for a longer term event and a cure comes about, they can dial back their coverage later.

Possibly our group should invite someone who specializes in genetics and ethics to address this issue with us, maybe as a webinar or question/answer in the doctor's category of the forum. A group like this may offer insight beyond what the Alzheimer's Association does https://bioethics.georgetown.edu/explor ... nd-ethics/

I wish it were cut and dry, but hopefully this will help some ...
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Julie G
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Re: Tell my children or not?

Post by Julie G »

Possibly our group should invite someone who specializes in genetics and ethics to address this issue with us, maybe as a webinar or question/answer in the doctor's category of the forum. A group like this may offer insight beyond what the Alzheimer's Association does https://bioethics.georgetown.edu/explor ... nd-ethics/
Good suggestion, Circ. Apologies FC for going slightly off-topic, but this is a good opportunity to announce that in July, we will be invited to embark in research conducted by Dr. Doris Zallen of Virgina Tech, delving into the implications of learning of our E4 status. Dr. Zallen is the author of To Test or Not: A Guide to Genetic Screening and Risk


Dr. Zallen has a fascinating background. She is a Harvard trained hardcore scientist, but has largely turned her focus to bio-ethics. She's very intrigued with the implications of the knowledge of APOE-ε4 status. I've had the privilege of speaking with her on a few occasions, she's a lovely and caring person. She's currently traveling, but I shall soon invite her to host a thread delving into the myriad ways this knowledge effects us. It's a big deal to us personally, but as FC indicates; it also has tremendous effects on our family members.
http://www.vtc.vt.edu/education/departm ... isbio.html
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Stavia
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Re: Tell my children or not?

Post by Stavia »

Fc, if your wife is 3/3, then your sons are 3/4 and at higher CVD risk before they will be old enough to be at AD risk. There is heaps of evidence around reducing CVD risk. Is their lifestyle truly optimal for this?
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Re: Tell my children or not?

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Fc1345linville wrote:I am a 73 year old father of three male children, ages 38, 41 and 43. My wife and I have seven grandchildren.
I am also a 73 year old father of three male children, slightly older at 46, 49, and 50. And I have six grandchildren, so we're almost in the same ballpark. I'm 3/4 rather than 4/4, however, and my eldest has gotten the news that he's 3/3 from 23andme, so I don't worry much about him.

Major difference, however, is that I've had three wives. My youngest son has just recently advised me that his mother (not my current wife) has been diagnosed with AZ at age 70, so I've urged him to get his genome sequenced, and he has, but his results aren't up yet.

The thing is, these aren't kids. These are adults with adult problems and outlooks, and they have the ability to deal with anything that you can throw at them. My youngest son initially told me that he didn't want to know, but after his mother was diagnosed, I convinced him that it was in his best interests to have as much information as possible about his own genetics, especially since it's still early enough for him to do something about it.

So yes, I told my kids as soon as I found out that I was 3/4. And the reason that I went to 23andme in the first place is because my own father died with AZ, and I wanted to know as much as possible about my own genetics.

I can only wish that this information had been available to me in my 30's or 40's.

As Kenny Rogers might sing, with regret, "I picked a fine time to find I'm E4..."
It's weird how I'm constantly surprised by the passage of time when it's literally the most predictable thing in the universe. -- xkcd
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Re: Tell my children or not?

Post by circular »

Wow Julie, very exciting news about the study coming up!!!
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Re: Tell my children or not?

Post by Tincup »

I'm 3/4 and up learning my status, a year ago, immediately told my adult children. I offered to have them both tested. They both wanted to know, did test and are both 3/4. They are in their mid to late 20's. I'm very open with them about it. At the same time, I offered to have my fiance' (now wife) tested. She did and learned she is 4/4. She recently joined me in the Bay Area for our Meetup.
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Re: Tell my children or not?

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Fc1345linville wrote:I am a 73 year old father of three male children, ages 38, 41 and 43. My wife and I have seven grandchildren. Two years ago I literally stumbled upon my APOE4/4 status after seeking ancestral info from 23andme. Since then I have been reading about AD, greatly assisted by joining this forum earlier this year. While I have discussed my 4/4 status thoroughly with my wife, I have not done so with my children. All three children live very healthy life styles.

So, my ethical dilemma is whether to tell them what I know. None of them show any symptoms of early AD, and neither do I. Having wrung my hands about this for almost two years, not a day goes by that I do not worry about what could be around the corner for me, or way down the block for them. At this point, I am sticking with silence, but there are a lot of intelligent people out there in the forum who have informed opinions I would be interested in hearing. Thanks in advance for sharing.
I'm de-lurking to express my strong opinions.

Tell your guys that you're 4/4. Then tell them how you're going to make their lives easier.

In 1988, my grandfather ambushed our family with dementia at age 84. (He lived alone, thousands of miles away.) Once Grandpa settled into the care facility, Dad spent several years (and thousands of dollars) reconstructing and sorting out his affairs. Grandpa spent 14 years in full care, dying in 2002 at the age of 97. I could write thousands of words on that subject-- quite a few family horror stories-- but I'll just report that Dad told my brother and me several times that he wouldn't do this to us.

Dad first noted his own Alzheimer's symptoms in 2008 at the age of 74. (He lived alone too.) It became clear to us sons in 2009, but Dad rejected all offers of assistance. We decided to wait him out, although we quietly hired a geriatric care manager and started researching care facilities. In early 2011 Dad ended up in the emergency room with a perforated ulcer.

My brother and I had an 18-month head start on Dad's loss of independence, but we still scrambled for a week in the ICU with the GCM and the discharge staff. Once Dad settled into the care facility, it took us sons nine months and over $10K in legal fees to be appointed his guardian and conservator. We had to empty a 2BR apartment and search through dozens of files and boxes going back 60 years. I spent over a hundred hours reconstructing and sorting out his finances, and now I've been running them for over four years. I still spend a few hours every month on routine financial chores, plus more hours for the tax returns and the annual conservator report to the probate court. Today Dad's 81 years old and in much better physical condition than Grandpa ever was. We're in this for the long haul.

From my perspective, I think your guys would appreciate having a little advance notification about what could be waiting for them if you develop Alzheimer's symptoms. At the very least you could give one of them the POAs from all your financial institutions (now!) so that they can help out your spouse while she's in the caregiver role. A revocable living trust would be even more useful. An advance medical directive is essential.

I'll also say that you don't want to make your loved ones search through your files for your logins and passwords. Get that on paper in a lockbox accessible to your spouse and at least one adult child. Update it every 6-12 months.

Instead of wringing your hands, you could worry constructively. Read David Hilfiker's blog, or Bob DeMarco's Alzheimer's Reading Room, or Thomas DeBaggio's "When It Gets Dark", or Paula Span's "When The Time Comes". Pick the techniques and solutions that work for you. Discuss them with your family so that they don't have to guess.

Do your adult children another favor: test their genomes. You should pay for it so that they feel the obligation to accept your gift.

In late 2011 my spouse and I and our 19-year-old daughter tested our genomes. Our biggest surprise had nothing to do with APOE4.

23andMe revealed that I'm a carrier for cystic fibrosis. If my spouse had happened to be a CF carrier too, our daughter's life could have been very different. (When I Googled for other family with CF, I discovered a distant cousin who had a double-lung transplant a few years ago at the age of 19. She's much better now.) Thanks to me, our daughter is also a CF carrier. 23AndMe lets her make a more informed decision about starting a family (and who she starts it with) than her parents ever did.

My brother declined genetic testing-- he's decided that he wants to be blissfully ignorant. But then he hasn't started a family, either. Or maybe he's decided to just watch me.

Since I'm Dad's conservator, I'm not going to discuss my APOE status. However the precedent of my male heritage has scared me straight on diet, exercise, possessions, and financial records. I'm sure you're getting lots of helpful suggestions from your family on the first two so I'll just focus on the latter two.

Sorting out and cleaning two apartments for old guys has just about turned me into a Stoic minimalist. I've been steadily pruning my personal crap out of my closets and drawers. Every time I go into our attic for something, I look at each object up there and ask myself if my spouse & daughter would appreciate having to go through it after I'm no longer capable. I clean all of my file folders (paper and hard drive) annually. My spouse and I have scanned hundreds of photos and reams of paper so that the memories are on record now. I even have StoryKeeper accounts for myself and my father.

My spouse has let me handle most of our finances for the last 29 years. (She's informed but apathetic.) In the next couple of years we're going to set up a revocable living trust. In 2020, when I turn age 60, she's going to take over as primary trustee with our daughter as contingent trustee. Somewhere in the 2040s, my spouse will turn the whole trust over to our daughter. I have fewer than five years to simplify and consolidate all of our finances for my spouse & our daughter to take over, or else I'm going to hear about it for the rest of my life.

If I develop dementia symptoms, then nobody gets sandbagged with a third-generation bad turnover. If I don't develop dementia symptoms, then I've escaped many decades of financial drudgery with more time for surfing. Either way I win.

If you take action then you'll do less worrying and hand-wringing too.
Author of "The Military Guide to Financial Independence and Retirement". Royalties go to military charities.
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SusanJ
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Re: Tell my children or not?

Post by SusanJ »

Nords, sorry about the family history. Several of us know all too well the challenges of dealing with relatives with Alzheimer's. My father had Alzheimer's, so I'll send an extra hug on Father's Day.

I readily agree that all of us with E4 genes need to have complete legal planning and family plans.

It's been peace of mind for my husband and I especially since we don't have children. We have a trust, POA, and organized everything into the infamous "red folder" for my niece. Families need to know, since as you points out, once someone starts showing signs, they often deny having problems. I suspect we all would fall into that camp when faced with symptoms.
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Re: Tell my children or not?

Post by Stavia »

Nords, thank you so so much for your honest post. I'm serious about being very grateful. I'm about to show my husband and insist we follow it. I am the same age as you but he is 60. It cut thru all the handwringing crap that sometimes clouds my thinking. I needed this and prolly many others did too.
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