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New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Postby DistinguishedHeathen » Fri Sep 25, 2020 2:54 pm

Hi Everyone! I found this group thanks to Dale Bredesen's book and I'm so relieved to be in good (albeit genetically unlucky) company. Please bear with me, as this is a bit of a novel, but recent events have left me overwhelmed and I just need to get it out somewhere.

TL/DR: My mom is just beginning to slip into AD, meanwhile I'm trying balance the stress of her care while working to avoid the same fate.

Three years ago, my mom and I took a 23&Me test and learned we were both heterozygous for APOE4. I was filled with grief/worry because I'd recently begun to notice the early indications of MCI in my mom (a brilliant former English teacher-cum-engineer), forgetting chunks of some common, multisyllabic words and an odd habit of consistently reversing pronouns ("he" became "she," when flustered, she'd say: "You're my mother! Don't tell me what to do!" instead of "You're my daughter! Don't tell me what to do!").

But mom went into flat denial, declaring we'd never had anyone in the family with the disease (I reminded her of the stories of her paternal grandmother forgetting who grandpa was before she died. Mom denied it was a sign of AD) and, more exceptionally, claiming she KNEW for a fact that SHE would never get AD and becoming furious whenever I would ask, even as a figure of speech: "hey mom, remember when...."

At the time, my partner, a geneticist at NYU Langone, urged me to not read much into it because mom was otherwise healthy -- very high HDL (72), thin and fit, great blood pressure and heart health. He also reassured me that, because of the advances in AD research, and my relative distance from menopause I would likely avoid AD. So, things were calm for the next few years all the way through when we saw mom for Christmas 2019 (she lives in Georgia, we're in NYC) and found her much the same as she'd been over the course of the three years prior.

Fast forward to spring 2020. I'd planned to visit her for her 71st birthday in March, but couldn't due to the pandemic. Over the coming months, her texts became increasingly disjointed and she seemed to forget more words during our calls. She claimed to have lost access to her email and the internet. She expressed increasing confusion when driving, calling me from the road to ask for step-by-step directions on routes she'd known at Christmas. Feeling alarmed, we rushed to Georgia for Labor Day week.

While I was relieved to see the house as neat and orderly as always and her two cats well cared for, it was clear that she'd tipped beyond MCI. Mom has lost the ability to fluidly speak for more than a few sentences or fully recall words with more than three syllables. She also forgets or flubs common, simple words like "pill," "waterfall," "Tylenol," etc. while using odd replacements: "the lane dies (instead of runs out)" and "my tire is dead (instead of flat)," even forgetting recent events like getting her cats spayed in February. And the denial? Worse than ever. I'm now in the process of getting her into a gerontologist under the auspices of treating her osteoporosis (which is indeed part of it) so I can get her diagnosed and hopefully get some legal and lifestyle plans in place so we can both have a better quality of life through this journey.

When it comes to mom, I'm deathly afraid for her quality of life and in deep doubt about her willingness to accept any of the ReCODE protocol (she's violently opposed to all pills/vitamins, claims an allergy to all fish and fat, refuses exercise by saying it's too painful, and is a frail 108 lbs, down from a healthy 128). She also has a lifelong fatalistic attitude and has socially isolated herself over the years from everyone but me and my aunt (who lives next door to her) due to untreated Borderline Personality Disorder.

But for myself? I'm hopeful. Although bloodwork at age 32 (before I knew my APOE4 status) revealed scary low HDL (25) and slightly elevated AC1 (fasting glucose was 78), seeing my mom kicked my ass. I was already doing some of the things outlined in the ReCODE protocol, but I'm adding more pieces every day.

I would love to hear from other who share some of my strengths and struggles and see how things are working out for them:

THE GOOD:

* I'm 37, 5'5" and 152 lbs -- so not a ton to lose before my goal weight of 130

* Just 1 copy of APOE4

* Don't like alcohol

* Never smoked (though I do smoke weed 1x/week since age 30)

* Daily 14-22 hour fasts (with occasional 4-day water fasts) since 2017 because they just feel good

* Blood pressure avg. 100/58

* I LOVE cruciferous veggies, fermented foods, and berries and cook often

* 1g Omega 3 daily in phospholipid form

* 450mg of daily choline

* 10g daily HP Inulin w/butryic acid

* daily B-complex

* daily NR+ Pterostilbene

* Great dental health

* 35 min/day cardio-boosting DDP Yoga since May

* Light 2x/week weight training until I can get back into the gym, as I enjoy lifting heavy

* Walk 12-25 miles/week

* Intellectually intense job (Communications director working in political organizing)

* When not in a pandemic, I'm very socially active


THE BAD:

* One copy of APOE4

* An INSANE sugar addiction. When eating freely/not trying to eat well, I can consume as much as 40-100g/day in the form of ice cream, candy bars, and bubble tea (though I generally don't eat meals w/added sugar and never drink soda). I did perfect keto for 8 weeks back in 2016 and finally broke when a man opened a Snickers on the train and I got the shakes and started sweating. The 4-day fasts reset my baseline, however, and enable me to cut the bulk of my sugar consumption over the next few months.

* I struggle with reaching deep sleep (sleep apps often show that I never get past REM). Despite good sleep hygiene, I'm a VERY light sleeper and move a great deal in my sleep. I also struggle with allergies that worsen at night and interfere with my breathing, often leaving me very foggy in the mornings. Any help with this? It seems APOE4 is associated with impaired sleep.

* I love lean red meat (I have a visceral aversion to the texture of fat) and pork, but this still seems to be a no-no

* I hate the taste of fish with a burning passion, though I'm trying to cultivate a palate for salmon at least

* Stress. As an only child to a divorced mom who is extremely resistant to care, living in Georgia, and who is slipping in AD, I feel deep and constant anguish. This also comes on the heels of numerous protracted deaths and illnesses of loved ones, including those in which I was the primary caretaker for 5+ years until their deaths.
Last edited by DistinguishedHeathen on Sat Sep 26, 2020 4:50 pm, edited 4 times in total.

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Re: New here! 37F in NYC, Mom (71) is Pending Alzheimer's Dx

Postby Tincup » Fri Sep 25, 2020 3:20 pm

DistinguishedHeathen wrote:Hi Everyone! I found this group thanks to Dale Bresden's book and I'm so relieved to be in good (albeit genetically unlucky) company. Please bear with me, as this is a bit of a novel, but recent events have left me overwhelmed so I just need to get it out somewhere.

TL/DR: My mom is just beginning to slip into AD, meanwhile I'm trying balance the stress of her care while working to avoid the same fate.


Welcome DistinguishedHeathen!

As an only child (E3/4) of a brilliant mother who passed with dementia, I can relate. I'm now 65, so at 37 you have a lot of time for error correction. It is difficult to help at a distance (I did that, too & ultimately moved my mom near me). My E4/4 wife's 73 year old sister is going down the AlzD path. We just got the gory details from one of her daughters. She is also unlikely to change anything. My wife has shared her 4/4 status with her 4 siblings, without effect. This is difficult. One thought, if you could get your mom to consume ketone esters (or less potent caprylic acid, C8), that would provide an alternative fuel source, without having to change diet & etc. If she got more brain energy, perhaps she'd be more receptive to other changes.

One of our member's, Laurie, has a Harvard PhD husband chemist. His mom started exhibiting Alz D at 86, 8 years ago (age & time are approximate - from my memory). They got her to start consuming Fiji water, which is high in silica & will help take aluminum out of the body. They also addressed the aluminum intake side by changing her coffee maker with an aluminum element, among other things. A search on Laurie's posts is here. This being said, aluminum is controversial as a single agent for Alz D. I'm trying to think of things you can do without much lifestyle change for her. Laurie's husband, Dennis N. Krauss, has written a few books on the topic.

As to sugar intake. As mentioned, my mom was very bright. Got a physics degree in 1948 (age 22) & managed the DOD's first attempts at missile tracking with computers. At age 60, she returned and got a degree in computer science. She would tell me she was much mentally slower than she was at nineteen. As she was setting the curve in her classes, I wasn't worried. Fast forward to my investigating my ApoE4 status (I have no idea if she was the parent I got my 4 from). I learned that 4's can exhibit inhibited cerebral glucose processing as early as their 3rd decade, years before any mental deficits occur. This may explain my mother's comments.

You will find a caring group here, with lots of information.
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Re: New here! 37F in NYC, Mom (71) is Pending Alzheimer's Dx

Postby NF52 » Fri Sep 25, 2020 5:51 pm

DistinguishedHeathen wrote:Hi Everyone! I found this group thanks to Dale Bresden's book and I'm so relieved to be in good (albeit genetically unlucky) company. Please bear with me, as this is a bit of a novel, but recent events have left me overwhelmed so I just need to get it out somewhere.

...

When it comes to mom, I'm deathly afraid for her quality of life...

But for myself? I'm hopeful...
I would love to hear from other who share some of my strengths and struggles and see how things are working out for them: ...
Welcome, DistinguishedHeathen!

A warm hug from someone who is of your mom's generation (I'm 68), with a 71 year old sister who, like your mom, will defend to the end her right to refuse help for mental health issues. I also have a smart, wonderful, active daughter just a year younger than you, who is also ApoE 3/4. I witnessed from only 15 minutes away my own mother go slowly for years, then quickly in months, from MCI in her 70's to "mixed dementia" (meaning she had both vascular dementia, linked to long-standing high blood pressure and recent congestive heart failure and Alzheimer's dementia) in her 80's. And while you and I both share a sweet tooth, like your mother, mine kept her weight at 125 for decades, until it dropped with her cognition to a frail 108 lbs. She went from a teen who loved tennis and an adult who loved swimming and walking to a woman who avoided most exercise from what I now believe was a realization that her balance and gait was off and her sense of where she was in space was sometimes limited.

So let me first speak to your "deep and constant anguish". You are experiencing incredible pain, and may be lying awake nights re-visiting all the ways you think you could have changed your mother's current condition, or should have recognized it earlier, or would have been able to do something if only you lived next door to her, instead of in NYC. You need to set that burden down. Life is painful enough without blaming ourselves for what we could not have foreseen or prevented. As the daughter of a similar mother, as the mother of daughter who is as bright and talented as you are and as the not-always perfect woman with a sweet tooth, I have a 35-55% change of having MCI or AD by the time I am 85 (because of my two copies of ApoE 4). I have led a fulfilling and enjoyable life--and continue to seek out new challenges. But if at age 71 I have developed MCI or AD, I want my family to know that I am at peace with that, and know how lucky I am to have them to be there with me wherever this journey leads. In her heart, your mom knows that also. You are going to be better able to support your mom and your own health if you give yourself permission to sometimes take the 30,000 foot view of first what is going well.


I have been lucky enough to learn from many smart people on this forum and some great clinicians and researchers in the field ( I sit on an Advisory Board at the Alzheimer's Clinical Trial Consortium and review grants as a "Consumer" for a DOD-funded program), that no one action, or one choice, determines, or even reliably predicts, who will and will not get MCI/AD at a given age. I also know that we ApoE 4's seem uniquely likely to accumulate toxic amyloid beta plaques and (perhaps more toxic) amyloid beta oligomers. Those over years or decades lead to tau tangles, which eventually jam the signals that are needed for our brain synapses.

Some novel therapies are being tried to reduce amyloid plaques and oligomers and more are in the works. (You've probably seen the news about the FDA fast-tracking a decision on whether to approve Aducanumab for people with MCI and mild AD by early next year.) But none of those was around 15 years ago, when your mom's amyloid build-up may have started, nor are any easy blood tests to identify people with amyloid and tau yet on the market (although those also appear close to being approved within a few years).

Here's how I would gently try to re-frame your mom's behaviors and attitudes:

She also forgets or flubs common, simple words like "pill," "waterfall," "Tylenol," etc. while using odd replacements: "the lane dies (instead of runs out)" and "my tire is dead (instead of flat)," even forgetting recent events like getting her cats spayed in February. And the denial? Worse than ever.
Your mother is using "circumlocution" a wonderful ability of our brains to offer up words that are phonetically or semantically similar to one that is "on the tip of our tongue". As a former English teacher like your mom, I'm sure her brain is a wonderful repository of vocabulary--and it's very likely that she will continue to use that to communicate, which is what she's trying to do. You can help by saying "you're right; that lane is ending" or even joking "yup, that lane is as dead as a doornail". Recent events require the hippocampus to have strong connections to other sections of the brain, and to be able to activate those at a moment's notice. Unfortunately, it is also one of the first areas to show actual shrinkage during the early stages of MCI and AD, which means that it's easier just to shrug off these lapses. "The good news is that the cat got spayed back in February back when everything was still open--who can even remember back to those days."

she's violently opposed to all pills/vitamins, claims an allergy to all fish and fat, refuses exercise by saying it's too painful
Women my age seem to fall into two groups: those who believe all pills, even the meekest, may poison us, and those who think that taking pills above and beyond what our doctors suggest may be essential. Your mom may believe that people have been trying for years to have her take pills for her mental health, and she's distrustful of that. She also may sense that her balance and gait are off. If you noticed that she was walking slower during this recent visit, or that she seemed to be hesitant on stairs, or walking off curbs, that may be a sign that her visual-motor coordination has been lessened. While she might resist "exercise", she might not resist her sister's invitation to "have a walk downtown for coffee" or "join me in a chair yoga class" or even "let's go to the park and feed the ducks". A wise speech therapist once told me "The goal should always be embedded in the activity; the goal is NEVER the actual activity."

Even in dementia, people deserve to have their needs, values and preferences respected, as hard as that can be. I was alerted to this by a woman who was diagnosed three years ago with dementia and think it should be in every doctor's office: CANADIAN CHARTER OF RIGHTS FOR PEOPLE WITH DEMENTIA

You may want to consider whether it would be possible for your mother to agree to an evaluation at Emory's Integrated Memory Care Clinic or consider having them work with her primary care provider after a diagnosis. They can also alert you to current or upcoming trials that may be specifically targeted to people with ApoE 4 and a diagnosis of MCI or early AD.

Finally, yes, do act on the need to safeguard her finances and her legal matters. Having used an elder law attorney in March for myself and my husband to have rock-solid Advance Care Directives, Durable Powers-of Attorney, advice on having most things avoid probate, and a Living Will with preferences for my own care in the event of COVID-19 and or serious life-threatening illness, I think you will find such a lawyer to be invaluable. You may be able to use COVID-19 to get your mother to such a lawyer, because she is entitled to be involved in decisions to the greatest extent feasible.

You may find it important to have bills sent to you, to be sure her phone number has a SPAM alert feature, to be listed as the emergency contact on all medical forms, and to be sent copies of any policies that may lapse in the event of non-payment. You can talk with your aunt about being the "back-up" for her email and internet access, and think about writing cue cards with instructions on how to log on.

Apologies for my own TL/DR reply. Know this: your mother's love will not fail, no matter what happens to her memory or her language. Not even if her emotions and fears sometimes lead her to say hurtful things. As for yourself, trust the wisdom of your geneticist partner: The next 5-10 years are going to be watershed years for Alzheimer's prevention for your generation! Be well, and keep doing your important work every day.
4/4 and still an optimist!

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Re: New here! 37F in NYC, Mom (71) is Pending Alzheimer's Dx

Postby JuttaH » Fri Sep 25, 2020 7:08 pm

Not to sound weird, but there could also be other issues going on that could contribute to her speech issues. I feel compelled to play devil's advocate because it's not unusual for people to jump onto the "She/He has Alzheimer's!" train whenever they see an elderly relative become encumbered with age and fragility.

My mother's been reversing and garbling her words for years at this point, and is in her mid 70s. My much older siblings always insisted SHE had Alzheimers, even when my father was keeping the oven on all night, letting the faucet run until the basement flooded, etc. Since I lived with them, I knew my father was telling my siblings bogus information, there was a lot of projection on his part. His own brother had horrific Alzheimers, as did many of his immediate family in the past.

Hmm, maybe life stress, an overbearing husband, and too many children turned part of my mother's brain into mush at times. Regardless, she could pay her own bills, keep her appointments, clean, cook. Worst thing she'd lose was her glasses, but would find them quickly.

I used promethease on DNA tests from my mother and myself with Ancestry.com results. Promethease was dead-on accurate with many of my personal health problems, including two genetic mutations that I later confirmed via "official" tests. Ironically, I inherited one copy of the Apoe 4, but not from her. She carries one Apoe 3, and that's it. She does carry ATM mutation-- a mutation that causes severe neurological disabilities in people who carry two copies of the same mutation. It sometimes causes neurological issues in people who are simply carriers. I've always jumbled my words horribly, it's been getting worse as I get older, and I carry the same mutation. Oh yes, and I think she was also diagnosed BPD at one point. She is extremely fluent if she's angry and wants to curse at someone.

Your mom's word flubbing could be related to COVID stress, watching too much news, being overwhelmed by all the drama that is 2020, could be a neurological issue that isn't Alzheimers. She might have shut off her internet because she felt it was wasting her time and money, but doesn't want to own up to it. Covid itself seems to cause problems in people that aren't entirely understood, and some people catch it and don't realize it. Sometimes medications for other issues can cause mental fog, including antidepressants, anti-anxiety meds. If she's managing to keep her house in check and her cats healthy, this is a good sign.

I wouldn't go full stop on insisting she has Alzheimers. That might trigger her having a very unpleasant reaction towards you. Long story ahead, to illustrate a point: My one sister kept telling my siblings and extended family that my mother had Alzheimers, and it truly enraged my mother when she found out... to be honest, I didn't blame her, as this sibling was prone to extracting large sums of money from my father in the past. Same sibling was badmouthing me to everyone willing to listen, making up stories. I imagine my mother was suspicious that my sister wanted to take over the large IRA my mother had inherited after my father died, my sister was pissed that I had POA status. No, I wasn't touching her money, but... Let's just say that now thankfully, that issue is off my plate now as I live in another state. I had to recuse myself from this POA status, as I was getting maligned by most of my siblings and was accused of things I did not do and/or had no intention of doing.

My mother has a cousin's wife as her POA now, which is great-- this cousin is local to my mother's residence, trustworthy, financially stable, and has no reason to be a leech or to push my mother in a home against her will. Your mother, if she has any social contacts at all, probably knows of young people who've manipulated older people in order to gain access to their social security money, IRAs, etc.. I think this is a real issue that concerns older people who are losing their health as they age. Sometimes designating a POA within a family can set off a real shitstorm of a family feud between siblings, and I'm sure some older people are worried about THAT as well.

If you were to take your mother to a gerontologist, he or she might not be able to make a valid judgement on your mother during one visit. Some people just flub their words, some disease symptoms might mimic Alzheimers (like MS or depression), and physicians don't jump at the opportunity to tell people they're invalid, that they most definitely have Alzheimers... at most they will take away someone's drivers license if they are blind/have seizures, admit them if they're obviously psychologically deranged and about to harm themselves, but they're usually reluctant to tell patients they're incapable of taking care of themselves (unless they specialize in helping people obtain disability). She could tell you to get lost if you bring the issue of Alzheimer's up during an office visit, and the physician would have to make you leave the room. Some physicians themselves are wary of older or disabled patients being manipulated as they're afraid of Munchausen's types, drug seekers (they see children push their cancer-ridden parents to get pain meds, only to steal them) and they're extremely reluctant to violate HIPAA.

Not sure what the laws are in Georgia, but I think some places in the country have social services that will check on elderly people if concerned individuals call them. I also know that if someone gets hospitalized and shows obvious signs of Alzheimers, it's not unlikely that they can be admitted to the hospital against their will if two or more psychiatrists agree in many states. This happened to one relative of mine who had extreme aggression while experiencing Alzheimers. He was admitted for a different issue, but became so combative and violent that the doctors were afraid for his wife's safety, and he was placed into care against his will much to his wife's relief.

My point is, don't push the issue. Older people might resist the suggestion that they are becoming senile for extremely valid reasons. Be close, be supportive, maybe open up to her that you want to designate your own official POA "In case I get COVID!" and maybe she'll get the hint that she might want to do the same. Tell her a story about a "friend" who has a parent suffering from Alzheimers when there's an open opportunity that doesn't make it seem forced. Maybe suggest that she designate someone as a POA "In case YOU get COVID!", but stress that SHE must decide which person she wants to designate, perhaps someone she trusts near where she lives, maybe someone from her church/synagogue of whom she trusts... don't insist that it be you. (Honestly, some people DO develop nasty problems from COVID and end up incapacitated, so that might be a good excuse to bring up POA). Are there any people listed on her HIPAA forms at her doctors' offices? Those might be good local people she can trust. Is your Aunt trustworthy? She might be a better advocate if she sees issues with your mother as she is local and your mother is already close to her.

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Re: New here! 37F in NYC, Mom (71) is Pending Alzheimer's Dx

Postby DistinguishedHeathen » Fri Sep 25, 2020 10:43 pm

JuttaH wrote:Your mom's word flubbing could be related to COVID stress, watching too much news, being overwhelmed by all the drama that is 2020, could be a neurological issue that isn't Alzheimers. She might have shut off her internet because she felt it was wasting her time and money, but doesn't want to own up to it. Covid itself seems to cause problems in people that aren't entirely understood, and some people catch it and don't realize it. Sometimes medications for other issues can cause mental fog, including antidepressants, anti-anxiety meds. If she's managing to keep her house in check and her cats healthy, this is a good sign.


Hi, I appreciate this detailed response, so I want to address each part. I'm sorry to seem pedantic and abrupt, I have Asperger's (lucky me, APOE4 and autism!), so I can seem very flat at times. Mom didn't shut off her internet, she panics when she gets a pop-up from Norton Antivirus (which she believes she MUST) because she's worried it means her information is being stolen (she doesn't understand the scare ads). She still has and pays for internet, she's just terrified to log into anything. She's also on NO medications and has been 100% isolated since COVID began, seeing no one (not even my aunt next door) and shopping at the grocery store in her N-95 mask at 6 am to avoid humans. She's a model in COVID prevention though she doesn't exactly recall that it's called "COVID" and she flubs the words "pandemic" and "coronavirus." When we visited Georgia, a friend of mine who is an Alzheimer's hospice nurse was confident mom already has Alzheimer's. So we're fully expecting the gerontologist (who I've already given a heads up to), to refer us to a neurologist.

JuttaH wrote:I wouldn't go full stop on insisting she has Alzheimers. That might trigger her having a very unpleasant reaction towards you. Long story ahead, to illustrate a point: My one sister kept telling my siblings and extended family that my mother had Alzheimers, and it truly enraged my mother when she found out... to be honest, I didn't blame her, as this sibling was prone to extracting large sums of money from my father in the past. Same sibling was badmouthing me to everyone willing to listen, making up stories. I imagine my mother was suspicious that my sister wanted to take over the large IRA my mother had inherited after my father died, my sister was pissed that I had POA status. No, I wasn't touching her money, but... Let's just say that now thankfully, that issue is off my plate now as I live in another state. I had to recuse myself from this POA status, as I was getting maligned by most of my siblings and was accused of things I did not do and/or had no intention of doing.


Sadly, in my panic, I already made that mistake when we discovered we both had one copy of APOE4. It made mom furious. I can't undo it, I was so panicked, I called her crying, begging her to see a doctor ASAP about her memory. I'd only recently become successful in my career and had all these grand plans to repay her for all the sacrifices she'd made when I was a child by taking her on vacations and paying her way (though she earns a very good pension and isn't in need), only to begin to lose her just as I was able to step into that role. I have no siblings, but yes, my evangelical ultra-Trump loving anti-masker family doesn't trust me because I'm a liberal in NYC working in political organizing for gender and LGBTQIA equity. That said, no one suspects I want her money. We are doing well and I'm mostly terrified of not being able to afford her the best in-home care so she can age in place for as long as possible.

JuttaH wrote:My mother has a cousin's wife as her POA now, which is great-- this cousin is local to my mother's residence, trustworthy, financially stable, and has no reason to be a leech or to push my mother in a home against her will. Your mother, if she has any social contacts at all, probably knows of young people who've manipulated older people in order to gain access to their social security money, IRAs, etc.. I think this is a real issue that concerns older people who are losing their health as they age. Sometimes designating a POA within a family can set off a real shitstorm of a family feud between siblings, and I'm sure some older people are worried about THAT as well.


I don't care if it's me or my aunt who is my mom's POA, but NO ONE else is willing to take it on, so it's me. Indeed, my family believes it's my duty to quit my job, leave my soon-to-be-husband, and move back to rural Georgia to be her full-time caregiver. The thing is, mom refuses any POA right now because she believes/confuses it with a guardianship and thinks it's for people to control her life. We've tried explaining that she can make it so it doesn't take effect unless she's completely unable to act in her own interests due to coma/etc., but she doesn't trust ANYONE. Though she trusts me the most because I've taken considerable time away from NYC to be with her during her to appointments and be her healthcare advocate as she struggles to explain her symptoms of a fractured spine due to osteoporosis and recount her medical history without 100 pages of her memory aids falling out of her journal onto the floor.

JuttaH wrote:If you were to take your mother to a gerontologist, he or she might not be able to make a valid judgement on your mother during one visit. Some people just flub their words, some disease symptoms might mimic Alzheimers (like MS or depression), and physicians don't jump at the opportunity to tell people they're invalid, that they most definitely have Alzheimers... at most they will take away someone's drivers license if they are blind/have seizures, admit them if they're obviously psychologically deranged and about to harm themselves, but they're usually reluctant to tell patients they're incapable of taking care of themselves (unless they specialize in helping people obtain disability). She could tell you to get lost if you bring the issue of Alzheimer's up during an office visit, and the physician would have to make you leave the room. Some physicians themselves are wary of older or disabled patients being manipulated as they're afraid of Munchausen's types, drug seekers (they see children push their cancer-ridden parents to get pain meds, only to steal them) and they're extremely reluctant to violate HIPAA.


It'll be clear to the doctor that my mom is cognitively impaired, I think, so I believe we are likely to be referred to a neurologist for further evaluation. And it'll be clear that I'm not looking for drugs, but want to know stages, get a social worker, and convince my mom to do some lifestyle interventions to try and improve her cognition and improve her independence.

JuttaH wrote:My point is, don't push the issue. Older people might resist the suggestion that they are becoming senile for extremely valid reasons. Be close, be supportive, maybe open up to her that you want to designate your own official POA "In case I get COVID!"


This is a great suggestion and one I'll take! I'm hoping that, after a diagnosis and meeting with a social worker, mom will come out of the denial, and despite the profound existential grief I'm expecting, will find some reserves to make a plan that we can go in on this as a team. Because fuck this disease and fuck it taking me or my mom without a fight.

Sorry for the language, but it feels appropriate. Thank you so much for the considered and thoughtful reply. You've given me a lot to think on.

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Re: New here! 37F in NYC, Mom (71) is Pending Alzheimer's Dx

Postby DistinguishedHeathen » Fri Sep 25, 2020 11:07 pm

NF52 wrote:
DistinguishedHeathen wrote:Hi Everyone! I found this group thanks to Dale Bresden's book and I'm so relieved to be in good (albeit genetically unlucky) company. Please bear with me, as this is a bit of a novel, but recent events have left me overwhelmed so I just need to get it out somewhere.

...

When it comes to mom, I'm deathly afraid for her quality of life...

But for myself? I'm hopeful...
I would love to hear from other who share some of my strengths and struggles and see how things are working out for them: ...
Welcome, DistinguishedHeathen!

A warm hug from someone who is of your mom's generation (I'm 68), with a 71 year old sister who, like your mom, will defend to the end her right to refuse help for mental health issues. I also have a smart, wonderful, active daughter just a year younger than you, who is also ApoE 3/4. I witnessed from only 15 minutes away my own mother go slowly for years, then quickly in months, from MCI in her 70's to "mixed dementia" (meaning she had both vascular dementia, linked to long-standing high blood pressure and recent congestive heart failure and Alzheimer's dementia) in her 80's. And while you and I both share a sweet tooth, like your mother, mine kept her weight at 125 for decades, until it dropped with her cognition to a frail 108 lbs. She went from a teen who loved tennis and an adult who loved swimming and walking to a woman who avoided most exercise from what I now believe was a realization that her balance and gait was off and her sense of where she was in space was sometimes limited.

So let me first speak to your "deep and constant anguish". You are experiencing incredible pain, and may be lying awake nights re-visiting all the ways you think you could have changed your mother's current condition, or should have recognized it earlier, or would have been able to do something if only you lived next door to her, instead of in NYC. You need to set that burden down. Life is painful enough without blaming ourselves for what we could not have foreseen or prevented. As the daughter of a similar mother, as the mother of daughter who is as bright and talented as you are and as the not-always perfect woman with a sweet tooth, I have a 35-55% change of having MCI or AD by the time I am 85 (because of my two copies of ApoE 4). I have led a fulfilling and enjoyable life--and continue to seek out new challenges. But if at age 71 I have developed MCI or AD, I want my family to know that I am at peace with that, and know how lucky I am to have them to be there with me wherever this journey leads. In her heart, your mom knows that also. You are going to be better able to support your mom and your own health if you give yourself permission to sometimes take the 30,000 foot view of first what is going well.


I have been lucky enough to learn from many smart people on this forum and some great clinicians and researchers in the field ( I sit on an Advisory Board at the Alzheimer's Clinical Trial Consortium and review grants as a "Consumer" for a DOD-funded program), that no one action, or one choice, determines, or even reliably predicts, who will and will not get MCI/AD at a given age. I also know that we ApoE 4's seem uniquely likely to accumulate toxic amyloid beta plaques and (perhaps more toxic) amyloid beta oligomers. Those over years or decades lead to tau tangles, which eventually jam the signals that are needed for our brain synapses.

Some novel therapies are being tried to reduce amyloid plaques and oligomers and more are in the works. (You've probably seen the news about the FDA fast-tracking a decision on whether to approve Aducanumab for people with MCI and mild AD by early next year.) But none of those was around 15 years ago, when your mom's amyloid build-up may have started, nor are any easy blood tests to identify people with amyloid and tau yet on the market (although those also appear close to being approved within a few years).

Here's how I would gently try to re-frame your mom's behaviors and attitudes:

She also forgets or flubs common, simple words like "pill," "waterfall," "Tylenol," etc. while using odd replacements: "the lane dies (instead of runs out)" and "my tire is dead (instead of flat)," even forgetting recent events like getting her cats spayed in February. And the denial? Worse than ever.
Your mother is using "circumlocution" a wonderful ability of our brains to offer up words that are phonetically or semantically similar to one that is "on the tip of our tongue". As a former English teacher like your mom, I'm sure her brain is a wonderful repository of vocabulary--and it's very likely that she will continue to use that to communicate, which is what she's trying to do. You can help by saying "you're right; that lane is ending" or even joking "yup, that lane is as dead as a doornail". Recent events require the hippocampus to have strong connections to other sections of the brain, and to be able to activate those at a moment's notice. Unfortunately, it is also one of the first areas to show actual shrinkage during the early stages of MCI and AD, which means that it's easier just to shrug off these lapses. "The good news is that the cat got spayed back in February back when everything was still open--who can even remember back to those days."

she's violently opposed to all pills/vitamins, claims an allergy to all fish and fat, refuses exercise by saying it's too painful
Women my age seem to fall into two groups: those who believe all pills, even the meekest, may poison us, and those who think that taking pills above and beyond what our doctors suggest may be essential. Your mom may believe that people have been trying for years to have her take pills for her mental health, and she's distrustful of that. She also may sense that her balance and gait are off. If you noticed that she was walking slower during this recent visit, or that she seemed to be hesitant on stairs, or walking off curbs, that may be a sign that her visual-motor coordination has been lessened. While she might resist "exercise", she might not resist her sister's invitation to "have a walk downtown for coffee" or "join me in a chair yoga class" or even "let's go to the park and feed the ducks". A wise speech therapist once told me "The goal should always be embedded in the activity; the goal is NEVER the actual activity."

Even in dementia, people deserve to have their needs, values and preferences respected, as hard as that can be. I was alerted to this by a woman who was diagnosed three years ago with dementia and think it should be in every doctor's office: CANADIAN CHARTER OF RIGHTS FOR PEOPLE WITH DEMENTIA

You may want to consider whether it would be possible for your mother to agree to an evaluation at Emory's Integrated Memory Care Clinic or consider having them work with her primary care provider after a diagnosis. They can also alert you to current or upcoming trials that may be specifically targeted to people with ApoE 4 and a diagnosis of MCI or early AD.

Finally, yes, do act on the need to safeguard her finances and her legal matters. Having used an elder law attorney in March for myself and my husband to have rock-solid Advance Care Directives, Durable Powers-of Attorney, advice on having most things avoid probate, and a Living Will with preferences for my own care in the event of COVID-19 and or serious life-threatening illness, I think you will find such a lawyer to be invaluable. You may be able to use COVID-19 to get your mother to such a lawyer, because she is entitled to be involved in decisions to the greatest extent feasible.

You may find it important to have bills sent to you, to be sure her phone number has a SPAM alert feature, to be listed as the emergency contact on all medical forms, and to be sent copies of any policies that may lapse in the event of non-payment. You can talk with your aunt about being the "back-up" for her email and internet access, and think about writing cue cards with instructions on how to log on.

Apologies for my own TL/DR reply. Know this: your mother's love will not fail, no matter what happens to her memory or her language. Not even if her emotions and fears sometimes lead her to say hurtful things. As for yourself, trust the wisdom of your geneticist partner: The next 5-10 years are going to be watershed years for Alzheimer's prevention for your generation! Be well, and keep doing your important work every day.


Wow. I feel like you're in my brain. Thank you so much for this incredibly empathic, thorough, and thoughtful post. I feel a fragment of the burden lifted just reading it.

I feel like I've cried so much in the last two weeks that I can't even feel any more. My mom, for all her flaws, is a wonderful human being who I cherish in too many ways to count, and watching her slip like this and feeling like I'm holding this terrible secret of knowing something she doesn't is pure torture. My God, I've had an unusually hard/tragic life as far as personal tragedies and a wildly abusive childhood w/my father and then ex-husband, only to have us both break free of it all to end up here as the world is falling apart around us.

I'm not fatalistic, despite the sounds of it, just overwhelmed and terrified -- terrified of seeing my mom become someone who will just lie in a bed the last years of her life. As someone deeply in favor of The Good Death for myself, seeing this suffering and knowing there's no way to meaningfully help (even if she wanted to while lucid) is a weird sort of torment.

I was traumatized watching my beloved maternal grandparents (neither had AD) decline and die in a few short months. I cannot conceive of YEARS of this. I often wonder how I will feel pleasure or ever enjoy life again with the constant knowing that mom is suffering.

That said, I realize this is still very fresh grief and that this is a normal part of the journey. I logically know I will adapt and will find a way to be ok and love/accept my mom in whatever form she takes. But right now? I'm just bleeding out emotionally.

I will say this: You've also given me a LOT of hope. To have two copies of APOE4 and to be so sharp and clear at 68 as you are offers a light that my many books and documentaries I've been watching about AD and people w/APOE4 do not.

May I ask: Do you follow the ReCODE/Bresden Protocol or nothing/something else? If so, how long and how closely?

I appreciate this is all anecdotal here, but I'm clinging to whatever slivers of hope I can find.

Once again, thank you for your vulnerability, empathy, and advice. So much.

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Re: New here! 37F in NYC, Mom (71) is Pending Alzheimer's Dx

Postby NF52 » Fri Sep 25, 2020 11:49 pm

DistinguishedHeathen wrote:...
I'm not fatalistic, despite the sounds of it, just overwhelmed and terrified -- terrified of seeing my mom become someone who will just lie in a bed the last years of her life. As someone deeply in favor of The Good Death for myself, seeing this suffering and knowing there's no way to meaningfully help (even if she wanted to while lucid) is a weird sort of torment.
... I often wonder how I will feel pleasure or ever enjoy life again with the constant knowing that mom is suffering.

That said, I realize this is still very fresh grief and that this is a normal part of the journey. I logically know I will adapt and will find a way to be ok and love/accept my mom in whatever form she takes. But right now? I'm just bleeding out emotionally.

I will say this: You've also given me a LOT of hope. To have two copies of APOE4 and to be so sharp and clear at 68 as you are offers a light that my many books and documentaries I've been watching about AD and people w/APOE4 do not.

May I ask: Do you follow the ReCODE/Bresden Protocol or nothing/something else? If so, how long and how closely?

I appreciate this is all anecdotal here, but I'm clinging to whatever slivers of hope I can find.

Once again, thank you for your vulnerability, empathy, and advice. So much.
Hi "D.H.",

Looks like we're both night-owls at times. Hope you don't mind my use of abbreviations; you have a terrific user name, but my spelling is not supported by my poor typing skills, especially after 1:00 AM! I was so glad to read both your reply to JuttaH and to me, since they show how thoughtful, analytical and open to others' views you are. I happen know plenty of great people with Asperger's and autism spectrum, some of them in my own family, so please look at that as a gift! I can confidently say that it you want a complex problem solved or a novel approach offered, you better include someone on the A-spectrum. If you haven't read Temple Grandin or heard her talk (which I was lucky to do at Cornell about 15 years ago), you should check her out.

I am not alone in being healthy and cognitively normal or above at 68 with ApoE 4/4. The trial I was in enrolled over 1000 people like me ages 60-75; I got to meet and hear from several, including some who decided or weren't able to join. as well as others on this forum. They include professors at leading schools, advocates for "Compassion and Choices" in dying who speak to legislators, grandparents who can manage multiple kids of ages as well as any kindergarden tacher, people who run non-profits and arranged supports to refugees, people who follow the Bredesen protocol mostly, or in part, or who are vegans or meat-eaters, or who eat anything they want and never gain an extra pound (sigh, not me!) They include people like me, who went back to get a second master's degree (on the Brain & Education!) from my dream school at age 57, and those who won competitive bridge tournaments at age 66, and those who moved cross-country to take a dream job at age 63 and those who served as an ombudsperson for assisted living residents at age 75, and those who climb mountains for fun, learn how to swim in their late 60's, plan trips to the South Pacific and use their CPA skills to revitalize community recreation programs for seniors. And that's all from handful (or two) of people.

For myself, I try to follow Dr. Bredesen's 3-12 rule of fasting (sometimes to 14 hours) and have lost weight since I retired--mostly due to less stress, more sleep and more exercise. My diet would best be considered Mediterranean, with little red meat, more salmon and eggs than I used to have, and supplementation with methylcobalamin (B-12) and Vitamin D-3. My mother, like yours, had terrible osteoporosis. I thought I was tough until one day, when my mom had another compression fracture, the young, female doctor on duty off-handedly looked at me and said: "You'll look like her eventually also; all the Germans do". I was just into menopause, when HRT was verboten, and burst into tears in the parking lot. (I'm also 50% Scots/ English). SO...I've done lots of weight bearing (including my two 50 lb grandkids) and took Fosamax the recommended 5 years. We can write and set "right" our own stories through lots of paths!

What works for me may not for you; check out Dr. Stavia's Primer, including the section on Biomarkers/recommended lab tests after Strategy 12, for great wisdom. It's been my go-to resource when I need to get my bearings--eespecially since Stavia is a doctor with ApoE 4/4 who has come back from two severe TBIs to run a diverse family medicine practice in what may be Paradise.

It's been very hard for people like your mom to be so isolated during these months. My 71 year old sister has chosen to isolate herself for years, much to the worsening of her mental and physical health. Yet I realize when I spend time with her that she is not "suffering" in the way you or I imagine that life. Nor do i think your mom will suffer the same kind of angst that she feels right now for more than a year or so. My mom and those of many people I've known and met became unaware of what she forgot (in the same way that i don't think about songs whose names and lyrics I don't remember; it's not something I've ever been good at, even with supposedly perfect pitch. Similarly, most people are unaware of tiny blind spots we almost all have, because our brains fill in the missing "pixels" from the available evidence. Loss of self-awareness or insight is variable, but does tend to increase over time.

My mother, her sisters, my mother-in-law and my paternal grandmother never progressed to "advanced" dementia. I only had one aunt who did, and that was after years of treatment for multiple life-threatening illnesses with hospital stays, each leading to further declines. My own Advance Care Plan makes clear that if I am in a moderate stage of dementia or higher, I do not want any life-sustaining treatment or test for cancer, or serious illness unless doing so would prevent great pain, not simply postpone death. My mother and two of her older sisters with Alzheimer's all lived to their late 80's, but each spent only 2 months in a nursing home before their palliative care deaths from respiratory/heart failure. All lived alone with some help from family and friends. (And all kept VERY clean homes, like your mother!) None of them ever had to undergo chemo or surgery for cancer, none had to deal with intractable pain (aside from osteoporosis), and none ever forgot those whom they loved. That is a Good Life and Good Death in my view. But one day at a time for now, and that includes sleep! Hugs from a former New Yorker (the western side) and current Southerner.
4/4 and still an optimist!

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Re: New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Postby SusanJ » Sat Sep 26, 2020 1:29 pm

Most of us here have faced helping a loved one battling dementia. It's a tough and exhausting place to be. Remember that you are doing your best to support your mom, and all caregivers out there will admit to having bad days and imperfect solutions.

DistinguishedHeathen wrote:My mom, for all her flaws, is a wonderful human being who I cherish in too many ways to count, and watching her slip like this and feeling like I'm holding this terrible secret of knowing something she doesn't is pure torture.


You might want to think of it as an act of kindness on your part to keep that "secret" from her. Sometimes the broken brain can't make sense of even the most logical explanations, and hearing "bad" things can be devastating when the ability to process (and remember) information is faulty. It might not be denial on her part, she might just not remember that anyone in the family had dementia, and the word dementia instead evokes a strong emotion that she cannot connect to family history.

DistinguishedHeathen wrote:My God, I've had an unusually hard/tragic life as far as personal tragedies and a wildly abusive childhood w/my father and then ex-husband, only to have us both break free of it all to end up here as the world is falling apart around us.


Please take a moment to read our thread about adverse childhood experiences. You owe it to your yourself to work through childhood trauma as you try to improve your own health. I had several years of helpful therapy, and thought I'd gone as far as I could, but when facing some new challenges several years later, I realized I needed more healing.

viewtopic.php?f=4&t=606&hilit=Adverse+Childhood+Experiences

And do come back and let us know how things are going.

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Re: New here! 37F in NYC, Mom (71) is Pending Alzheimer's Dx

Postby laurie » Sat Sep 26, 2020 1:37 pm

You mention "APOE 4 and Asperger"

I have some information for you. Have you read about aluminum being a causal factor of both Alzheimer's and Autism ? Professor Exley at Keele University has been researching this. His group has found large amounts of aluminum in the brains of people with Alzheimer's and Autism. He has also found that silica in the form of OSA (orthosilicic acid is effective at removing aluminum from the body including the brain). My mother in law has Alzheimer's and my husband Dennis N Crouse 7 years ago began researching ways to help his Mom. When he learned there was not treatment for Alzheimer's he read the scientific literature (he is a scientist). During his reading about aluminum and its neurotoxic effects he learned aluminum might be a cause of Autism. I am a retired child psychologist who worked in the public schools and witnessed first hand the rapid rise of Autism. My husband has written 2 books and I am passionate about getting this information to people. I am involved in a facebook group where children with Autism are improving in language, awareness and other areas when drinking silica rich mineral water. My mother in law is now 93 and living by herself in her own home. Her Alzheimer's began to impact her daily functioning in a significant way around the age of 85. I have a few posts in this forum. Here is a link to one of his evidenced based write ups about Alzheimer's and Aluminum. https://prevent-alzheimers-autism-stroke.blogspot.com/2019/01/aluminum-as-causal-factor-of-alzheimers.html
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Re: New here! 37F in NYC, Mom (71) is Pending Alzheimer's Dx

Postby DistinguishedHeathen » Sat Sep 26, 2020 3:45 pm

laurie wrote:You mention "APOE 4 and Asperger"

I have some information for you. Have you read about aluminum being a causal factor of both Alzheimer's and Autism ? Professor Exley at Keele University has been researching this. His group has found large amounts of aluminum in the brains of people with Alzheimer's and Autism. He has also found that silica in the form of OSA (orthosilicic acid is effective at removing aluminum from the body including the brain). My mother in law has Alzheimer's and my husband Dennis N Crouse 7 years ago began researching ways to help his Mom. When he learned there was not treatment for Alzheimer's he read the scientific literature (he is a scientist). During his reading about aluminum and its neurotoxic effects he learned aluminum might be a cause of Autism. I am a retired child psychologist who worked in the public schools and witnessed first hand the rapid rise of Autism. My husband has written 2 books and I am passionate about getting this information to people. I am involved in a facebook group where children with Autism are improving in language, awareness and other areas when drinking silica rich mineral water. My mother in law is now 93 and living by herself in her own home. Her Alzheimer's began to impact her daily functioning in a significant way around the age of 85. I have a few posts in this forum. Here is a link to one of his evidenced based write ups about Alzheimer's and Aluminum. https://prevent-alzheimers-autism-stroke.blogspot.com/2019/01/aluminum-as-causal-factor-of-alzheimers.html


Hi! I have seen this. My partner (a geneticist) and I think that, much like AD, the causes of ASD are myriad, with many contributors genetically (because it's been in the human population for eons) and environmentally (with a lot of recent research pointing to gut microbiome). I don't discount aluminum as a contributor (given that it was a small potential toxin to rid from my life, I switched to aluminum-free deodorant several years ago), though my family has a long history of diagnosed and suspected aspie folks, so there's a strong genetic component, it seems. We've been fortunate in that none of us are intellectually disabled (indeed, I had exceptionally precocious language abilities), as my partner and I suspect that ASD with concurrent intellectual disability might have other causes and could be another phenotype entirely that has yet to be teased out. Like AD, so much is still unknown about ASD.


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