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

Post by runeakb »

I feel sorry for your loss and I sincerely hope that you will find peace and time to take care of yourself now, and don't mind the extra pounds. Treat yourself with whatever makes you smile, I bet you deserve it. I can only imagine what a terrible time you and your mother have gone through.
My heartfelt best wishes to you
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Re: New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Post by DistinguishedHeathen »

NF52 wrote: Wed Apr 17, 2024 2:16 pm
DistinguishedHeathen wrote: Wed Apr 17, 2024 11:07 am An update: On July 12, 2023, my beloved mom died at the age of 74 due to rapidly advancing Alzheimer's (she went from stage 4 to 7 in just two years), severe osteoporosis, and multiple myeloma (which was diagnosed in July 2022). Literally no intervention could slow the tide of horror, every 3 months brought a new cliff of breathtaking physical and cognitive decline. My mom died emaciated and in terrible agony -- having attempted suicide no fewer than two times in the months leading up to her final collapse and slow death.

In that time and due to severe stress and trauma, I gained 24 pounds and hit 176lbs as my own health plummeted. Only now am I beginning to pick up the pieces and restart my own journey to avoid my mom's horrific fate.
Please accept my deep and heartfelt condolences on the loss of your mother at the young age of 74 last year. I remember when you posted about her pending diagnosis, and your grief at having to understand what that meant, when she was not going to be able to do the same. It's no comfort to you that her doctors were probably just as surprised at her rapid decline, which may have been exacerbated by multiple myeloma, a rare and nasty disease that neither of you deserved to have as a double blow. Having no means to alleviate unbearable pain is an agony for the person witnessing it, and I'm deeply sorry that she was not able to find relief from that before her death.

I've talked with grief counselors over the years when I was a special education administrator who too often had children with rare, fatal conditions die too young. They reminded me that those children were now free of pain and, regardless of one's religious beliefs, were safely in their parent's love forever. It doesn't make it any easier to get through the trauma initially though. Like you, my weight was well above what it is now after years of supporting my mother with Alzheimer's, with too many hospitalizations and too much that I couldn't control until she died of heart failure.

Going through what you did USUALLY leads a period of "acute medical stress disorder"--when someone knows that a loved one is at risk of serious injury or death and they feel a rollercoaster of emotions and bodily reactions. It is normal to feel as you did and probably do today . You are showing real stamina and determination to be restarting your own health journey. I hope you also prioritize finding time to do something you love deeply, or have been waiting to do for too long.

If the grief and trauma ever seems overwhelming, you might want to consider a few sessions of grief counseling. Most teaching hospitals now have people who are both kind and skillful in working through grief trauma.

You have your own history and your own future story to write. Your mother would want it to be one with joy in it.

Warmly,

Nancy
Thank you, Nancy. It was brutal. I'd hoped to be able to slow her decline (in the beginning) to no avail (the family were highly uncooperative and, in fact, worked hard to convince my mom that I didn't know what I was doing). Ultimately, when mom died, the family blamed me for her rapid decline and death (because I encouraged nutritional supplementation and visits with specialists that I'd chosen. The family, being both evangelical and Q-Anon, were highly skeptical of my and my husband's background -- I'm a science and medical writer and my husband is an Alzheimer's researcher and professor at NYU) and after they furiously fought my every attempt at caring for her, I was promptly disowned the day of her death.

I have pretty severe PTSD from all of it, but I'm lucky to be a healthy griever and not prone to depression. I've also had an excellent therapist to help me through. The worst of it has come at night, when images of her final days and moments sear my memory and leave me a sobbing, furious heap of regret and pain. I'm 9 months out and still embroiled in a horrific legal battle with the memory care facility and hospice who denied her any pain medication and let her die emaciated with bed sores due to their refusal to feed or turn her (alleging her behaviors prevented them from providing adequate care, which my attorney finds appalling coming from one of the most expensive memory care facilities in the state).

Despite the horrors, I never lost sight of my own future and the life she would have wanted me to pursue. The week after she died, I underwent surgery to remove a large fibroid that had dramatically impaired my quality of life, and within 8 weeks I was back in the gym every day. Now I'm finally in a place to manage my diet (I'm generally a healthy eater, but stress binges on weekends weren't doing me any favors) and get some baseline testing as I begin to refocus on myself in earnest.
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Re: New! 37F apoe3/4 in NYC, Mom (71, apoe3/4) is Pending Alzheimer's Dx

Post by NF52 »

DistinguishedHeathen wrote: Wed Apr 17, 2024 3:02 pm. Thank you, Nancy. It was brutal. I'd hoped to be able to slow her decline (in the beginning) to no avail (the family were highly uncooperative and, in fact, worked hard to convince my mom that I didn't know what I was doing). Ultimately, when mom died, the family blamed me for her rapid decline and death (because I encouraged nutritional supplementation and visits with specialists that I'd chosen. The family, being both evangelical and Q-Anon, were highly skeptical of my and my husband's background -- I'm a science and medical writer and my husband is an Alzheimer's researcher and professor at NYU) and after they furiously fought my every attempt at caring for her, I was promptly disowned the day of her death.

I have pretty severe PTSD from all of it, but I'm lucky to be a healthy griever and not prone to depression. I've also had an excellent therapist to help me through. The worst of it has come at night, when images of her final days and moments sear my memory and leave me a sobbing, furious heap of regret and pain. I'm 9 months out and still embroiled in a horrific legal battle with the memory care facility and hospice who denied her any pain medication and let her die emaciated with bed sores due to their refusal to feed or turn her (alleging her behaviors prevented them from providing adequate care, which my attorney finds appalling coming from one of the most expensive memory care facilities in the state).

Despite the horrors, I never lost sight of my own future and the life she would have wanted me to pursue. The week after she died, I underwent surgery to remove a large fibroid that had dramatically impaired my quality of life, and within 8 weeks I was back in the gym every day. Now I'm finally in a place to manage my diet (I'm generally a healthy eater, but stress binges on weekends weren't doing me any favors) and get some baseline testing as I begin to refocus on myself in earnest.
Unfortunately, we don't get to pick every member of our family. Most of my family is wonderful, but even just one person with irrational or paranoid beliefs can be intractable and lead to legal issues. In my case, even with skillful lawyers, that was resolved favorably only 5 years later, long after all of us had wisely decided that our mother would have wanted us to be happy.

Your expertise in science and medical writing and your husband's as an AD researcher will impact many more people than you will ever know. I think of people with ApoE 4, and those who are or have been in clinical trials, or are or have been support partners as an acquired family. We're not always on the same page, but we do all have each other's best interests at heart.

I just heard a presentation today from Dr. Sophia Wang, a geriatric psychiatrist at the Indiana University Alzheimer's Research Center. You can hear here starting at minute 27:38 if interested: 26th Brain Health Forum | Emory University She spoke on the need to provide nonpharmacological, environmental supports for challenging behaviors in moderate and late stage AD and when those are insufficient or, in the case of severe psychosis, bipolar disorder, the person is at high risk of self-harm or harm to others, to get an expert in to try medications. Seems like your lawyer is going to be a great ally in making sure others don't have the same standard of care.

Nancy
4/4 and still an optimist!
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