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We keep people alive too long when they're suffering is prolonged, and at great cost emotionally and financially to themselves and society... People on the b outside who aren't caregivers think their parent's decline and death will be gentle and sweet, Gramma at home surrounded by grandkids (never mind who is going to change her 15x a day, wipe her explosive diarrhea, lift her, dress her, wake at 3an when she's scared when the wound on her legs spontaneously opens, feed her, take her to doctor when she can't move...).
In the meantime as a caregiver, my business has suffered and may be destroyed because of the time required to manage the recent 2 rehab visits ( 6 weeks in 3 months) before her worst decline this past month. She's a vibrant funny, smart woman who has been reduced to a fearful, sad shell, kept alive only to be tortured by her incapacity and live in grief. I try hard to help her mental state. But how can I expect her to be content... Blind, almost deaf, incontinent, unable to walk to the fridge for a snack, constantly afraid... Away from the home she loved because modern medicine kept her alive with a pacemaker at 95 and antibiotics for every infection that could have (mercifully) killed her.
I definitely am planning a different exit based on this experience.
NO I absolutely do not want this for myself. I do live a much healthier life than my mother did for a long time. My husband and I are astounded as to how more compromised she can be and continue on. We have been told twice the end is near yet she rebounds but even more compromised. I see suffering and I just question why and for how long. It is very emotionally depleting. I also worry about money running out. She already was in a facility that was negligent. I don't want to move her elsewhere similar as she has a litany of health issues that need care.
Being Mortal: Medicine and What Matters in the End
Book by Atul Gawande
He rescinded his dnr, not that it was needed this time. This time he still got to go home but now he falls asleep immediately. He asked what we were watching, Monday Night Football, which he’s watched since it became a thing 40 years ago.
EPEC Distance Learning Modules (CME/CE Available)
Online self-paced modules below consisting of text, main points and video cases. The target audience for the EPEC distance learning programs is for engaged in palliative care education and clinical practice but in caring for my parents it was enormously helpful.Once a module has been purchased, you will have unlimited online access to the content of that module. 1.0 AMA PRA Category Credit(s)™ is available per module.
$30 each
Gaps and Elements of Care
This module provides background for the EPEC curriculum by presenting a profile of how people currently die in the United States and contrasts this with data about the way they would like to die.
Advance Care Planning
This module explains planning future medical care in case of the patient being unable to make decisions.
www.bioethics.northwestern.edu
I worried when my mom's heart/stroke medications were reduced that she would have a stroke that would leave her alive and in worse shape than she was in already, the last thing I wanted for her was even more suffering and indignity. Turns out I didn't need to worry about that, but who knew?
I also am left with lingering questions about whether not treating her much more aggressively when she was in her 70s and 80s led to her multi infarct vascular dementia (my diagnosis based on piecemeal information). So in her case might more actually have been better?
As recently as the 1940s it was normal for a person to go along in their life, take a steep decline for one reason or another, and die in a relatively short time. For some, that happened when they were in the 60s like my great-grandfather, but for others like my great-grandmother, it happened in their 90s. Either way, there weren't years upon years of declining health and mobility, and few people ended up in diapers for years on end.
I saw the real beginning of the decline when my folks were in their early 80s. My dad was the lucky(ish) one to have no serious ailments before dying just a few weeks after a cancer diagnosis, but my mother began to lose her vision to macular degeneration in her mid-70s, then she had a major health crisis at 85. She hung on until last year, dying at 92 after seven years of dementia, CHF, incontinence, and the loss of her vision and hearing. She was a dynamic, intelligent woman with a killer sense of humor, and to see her reduced to a lump sitting in a wheelchair staring out the window at nothing was heartbreaking. I'm only glad that in the final years her dementia made her think she was 16 years old again, in love with her first boyfriend, and perfectly healthy. She truly didn't know anything was wrong with her, but that didn't remove the lack of dignity that marked those last years. She'd have been horrified had she known what was ahead of her.
My husband and I both have had some serious talks about our futures. His dad died from a brain bleed because he was on blood thinners he may or may not have needed years after a minor heart issue, and my mother lived at least seven years longer than her body probably wanted to. Neither of us really wants to be taking a fistful of pills every morning, noon, and night either. Right now we're in our very early 60s and have no health issues, but I expect to make it to about 75-80 before things really start going south. I'm sure we'll have grandchildren by then, so we may not be as willing to check out without intervention as we are now, but it'll definitely be in both our minds to keep the doctors largely at bay.
My Uncle recently passed at 95, and he was still gardening and selling produce at his local produce stand up until the week before he passed. On days off he would go fishing. His kids, grandkids, great-grandkids would always be swarming around him. He drove his tractor with a wagon behind it filled with free pumpkins for many years, in the town's Thanksgiving parade. He lived in a Mayberry type community in the mid-west.
My boss died when he was 85 from covid in 2020 [before the vaccine was available], otherwise he would still be coming to work on a daily basis, meeting with clients, having lunch with his buddies, etc. He was playing his weekly round of golf just days before covid hit him. His buddies were around his age, too.
There are a lot of actors who are 85 and over who still keep busy working. And probably a lot of not so famous people who have a fulfilled lives.
When Dad was in his mid-90's he moved into senior living after my Mom passed. He was happy as a clam where he was living. My Dad's god-children use to call him on a regular basis because he was such a store house of information and he could make them laugh. A former neighbor of Dad use to stop over weekly to chat about history.
Oh, when my parents were in their late 80's, they were still doing volunteer work 3 days a week at a local hospital [information desk]. After their shift, they would go to Roy Roger's for their favorite meal.
Who knows, there may be more older folks out there that are enjoying their older years then we may think. Since we here are only focusing on those that need major caregiving.
Thought provoking.
Some say the Queen Mother's life was prolonged too long.
Me : I do not agree ; she is the exception.
Compounding the issue is that the nervous system is the least understood part of the human body, while giant steps are made in other areas of healthcare.
We can keep blood pumping, livers working, dialysis for kidneys, etc., but we can't fix the brain yet. The end result is a massive population of dementia/Alz patients living for 10+ years.
i wouldn’t commit suicide but i would stop most or all meds prolonging my life.
living too long-
i saw a woman in my aunt’s mc facility who had to be assisted in chewing her food, i.e. the aid held her bottom jaw and moved it up and down for her. Otherwise the woman would pocket the food in her jaw or blow it out of her mouth.
i sure as heck don’t want to live like that!
I also know elderly people who have a little, not much, dementia, and who are sincerely very happy with life. Appreciating every day! My guess is that your question is such a personal one; everyone must decide for themself, what they would want (if they can plan suicide...). Personally, just for me, I wouldn't commit suicide. I would live till the end, whatever it is. In addition, I realize that our survival instinct is very strong; our bodies/our whole soul, tries to live, even under harsh circumstances.
Most caregivers here are booomers or gen x. We will have it far worse and probably be about as bad as these senior brats and or dementia sufferers are. I expect right to die will become more of an acceptable option.
When I think about it, the meds I am taking today at mid 70's are meds that my late parents were taking when they passed in their mid-to-late 90's. Imagine if a doctor said that if you are past the age of 65, you can no longer take that medicine? What would be the cut off age? Don't let Congress get wind of this, someone would try to pass a Bill to cut cost to Medicare :P