Way cool. I hope that is the case, and that signals more sensible policy and personal choices in the future.
The difference between progressive dementia and a sudden stroke is that dementia is… well, progressive. And I have heard of no one first hand who managed to find the right moment to end the suffering. And after a certain point in the progression of dementia, it seems, people are no longer capable of even killing themselves, except, maybe, by refusing to eat and drink. That may be the hidden suicide. Specially not drinking will kill an old person quite fast, I have been told.
I kept my mother who had dementia at home until medical people told me I had to turn her every fifteen minutes to avoid bedsores. I decided to put her in a facility because living on ten minute naps was not feasible for me.
A month later at the facility, she died.
I try to comfort myself by thinking that maybe if I had kept her at home, she either would’ve died anyway, or also that keeping her alive as she was wasn’t any favor to her at all in her condition.
Well, my wife and I have discussed among ourselves and with 2 of our adult children specific indicia that we will not wish to continue, and that the appropriate showing of love and respect will be to help us die. Hopefully it will never come to pass, but we’ll see how it goes if it does.
There are 2 different perspectives to consider. Yes, the dementia patient will have difficulty identifying a specific point at which they wish to check out and acting upon that wish. That specific point may also be difficult for loved ones and caregivers to identify as it is occurring. But in many (most?) cases there should be little difficulty in eventually realizing that you have passed that point some time ago. If you and your siblings get to the point where you realize, “Hey, how many months has it been since mom recognized any of us, or seemed to get any enjoyment out of anything?”, why not make things right at that point?
This is sort of related to the difficulty in discontinuing treatment once it has been initiated. You had the pacemaker implanted in the hopes granny would recover after that stroke, but she hasn’t, and the damned battery has a 10-year life…
I do not know a single pet owner who upon reflection thinks they put their pet down too soon, but I know many who realize they kept their pet alive too long for various reasons that seemed to make sense at the time.
That about the pet owners is a very good analogy.
I can only wish you and your wife good luck and even better timing, hoping the same for me and my wife.
My mother stayed in her home, using up all her savings, until she went into a Medicaid funded nursing home. Which was awful to us, but she had such dementia that she didn’t know where she was living when she WAS in her home. She kept asking, ‘what is this place? Is it a hotel? Is my son/husband/parent staying here, too?’ I checked up on her frequently and she seemed vaguely content, involved in what activities they had, and she passed away quietly in her sleep two years later.
My MIL was vehemently against moving into assisted living, but the kids forced the issue as the previous situation was unsustainable.
Only a couple of weeks after she moved into the new place (she was not completely gone yet) SIL asked her if she’d like to drive past the old place or something. MIL had ZERO interest in doing so, saying “Why would I want to do that? THIS is my HOME.”
I do not intend to encourage that people be MEAN to for with dementia (well, privately I probably would support some euthanasia). But if a person is incompetent to handle their affairs, they should be declared incompetent, and those responsible ought not to let the incompetent person have undue influence over decisions, when those decisions impose costs on others. So the idea/wish that “Granny will be most comfortable in her home,” should be far from the determining factor.
I think it would not be a horrible idea to encourage just about everyone to spend some time in various assisted living facilities, to better get an idea of what they would like for themselves. Me, I’m very happy for our band to perform at them. But the more time I spend in them, the harder I’m finding it to envision a situation in which I would wish to live in one. Especially anything beyond the lowest level where people are relatively independent but have dining and housekeeping services.
My mother was ready to die. She and her sister talked about it every week. But when she had to chance to do it (she was bleeding painlessly into her stomach, and the blood loss would have killed her in a day or two) her doctor and her son talked her into getting treated. Her doctor pointed out how bitter she was that my father went off to play tennis when he had “pneumonia” and dropped dead at the gym. She was ready to die (if a little frightened by it, but her children were not ready for her to die.(I think her facts were wrong, and he would have died of the same pulmonary embolism had he stayed home. But the main facts that mattered were that he was happy to have an easy death, and she was unhappy that he left her. And my brothers were both going to be extremely unhappy if mom refused treatment and died.) (Spoilers to emphasize the main thread, there’s nothing gruesome hidden.)
Anyway, people stay alive for all sorts of reasons. My mother stayed alive for profoundly generous reasons, and paid dearly in pain and fear when covid finally took her.
Someone told my sister, “she’s with your father now”. My sister was polite and mumbled something, but what she thought was "they will both be REALLY surprised if that happens. A lot of us don’t believe in an afterlife. Certainly, I don’t, my siblings don’t, and my parents didn’t.
Thanks for sharing that. It is a conundrum that so many people have to make decisions with such lasting repercussions quickly, with imperfect information, when actively experiencing crises.
Apologies if I am being dense, but what was profoundly generous about her decision to stay alive. It sounded to me as tho she caved in to the doc and your brothers who may not have really had her best interests (which presumably she knew best) at heart.
I profess that I am ignorant as to exactly how the doctors’ side of such conversations comes across. My “suspicion” is that doctors likely tend to encourage treatment in most cases, but I admit that suspicion is based primarily on ignorance.
I’m sorry your mom passed in pain and fear.
My brothers were really not ready for her to die, just as she had not been ready for her husband to die. So she agreed to be treated, so as not to leave some of her children bitter and unhappy that she’d chosen death before she had to.
Her primary care physician wasn’t paid for any of what she chose to do, if that’s what you are implying. Everyone has different ideas about the optimal choices, and he feels that if you expect to successfully treat something, you should try it. And the procedure to stop her bleeding was, medically, completely successful.
My uncle was in assisted living and the last few month he couldn’t even hold a conversation his dementia was so bad. I really hope that if I’m that bad I meet with an “accident”.
This for me, please.
That said, my father spent his final months in a wonderful memory care unit of a private nursing home that we didn’t even pick. They were the first one with an opening and we simply lucked into it. He would have landed in a public home, but they were all full. It was truly a blessing that, if he had to land in a home, he landed in a good one.
As far as the best place to “end up”? The same place we all end up when it’s over, dementia or not.
My parents got in on that early on, and a few years later, I looked into it for myself. I was about 50 years old at the time, and those premiums were so high, one would be better off simply putting that money into a bank account and spending it down when the time came.
With no family at all, I worry about this a lot. There are no good
solutions. 
So when my Dad got Alzheimer’s, he went into a very expensive, upscale memory care facility that had just opened in Florida. Things were fine for the most part. Staff turnover made for some uneven care though.
The really lame thing happened when he started falling and had to be moved each time to a rehabilitation center. After the third(?) time, the memory care facility refused to take him back. So he ended up in a hospice and luckily did not last much longer.
I feel like it is false advertisement to say that you will take care of these people to the end and then bail on them when they become too much of a liability.
I imagine it was buried in the fine print that they could do that. But my sister did not pick up on it.
We bought long term care (LTC) for just that reason. In-home care can eat your saving at a quick gallop. Most insurances offer care on a graduated scale of $$$/Day. Even the federal government has LTC insurance plans, which is what we have.
That’s horrible. I am sorry for your pain and their treatment of your family. My dad was put in a wheelchair and they used a contraption to raise him out of bed and dress him. The team was wonderful and caring. But I’ve since heard his nursing home has gone downhill due to staff turnover. The website sure doesn’t tell that story (of course).
@ carnut Thanks. I am glad that your father received proper care.
That’s horrible. But I presume “they” moved him to the different places?
Or did your sister need to be involved?
@Newtosite He was moved from the hospital to an unassociated rehab facility. Then, the Memory Care place told us that he could not come back. To be clear, he was not a troublesome client. He just fell one too many times for them.