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'I am mine': Alzheimer's at 41 (2018)

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Re: 'I am mine': Alzheimer's at 41 (2018)

#61

Post by metamet »

mrleiter wrote: post #9

Jo sadly passed away shortly after this article was published. [1] RIP. [1] https://www.macleans.ca/news/canada/they-came-to-celebrate-j...

> Jo was adamant that he didn’t want to end up in a long-term care facility like the one in which he’d visited his mother—sometimes with Robin along for the ride when they began dating as teenagers in Kapuskasing, Ont.—and he hoped that Canada’s legalization of assisted death would allow him to avoid that. But when medical assistance in dying became law in 2016, excluded were “advance requests” that would have permitted people with dementia to set out terms for their death while they still had capacity to consent.

Found this sobering. And somewhat relevant to my life, in a tangential way.

My grandfather passed away from his second bout with lung cancer, a couple years after Alzheimer's had started to take him over, around 5 years ago. He was a miner on the Iron Range in Minnesota, where my family is, so that explained the lung cancer.

My grandma passed away a week ago from COVID. She tested positive for it the weekend before, in her nursing home. The reason she was in a nursing home is that her memory had been fading, up until it was decided that she couldn't take care of her house alone anymore, around a year ago.

Her memory was to the point where she'd circle back to things she already told me about 20 minutes before. But she was still cogent and it was still her.

But she didn't like living in the nursing home, because it didn't feel like much of a life. More of a routine. All of our conversation were extremely positive--that's who she was, afterall--but they were always somewhat morose. She always made sure to devote time in each conversation to telling me how much she loved me, was proud of me, and I'd do the same, reminiscing on the memories we had of me staying with them over the summer as a kid.

But it was pretty obvious to me--even though she never announced she knew she was going to die without being able to return to that life--that she wanted to make sure I knew how she felt, that there was no room for me to have missed the opportunity to know that, and that she was doing that on purpose, with intent.

Some of the hardest aspects to her death come with the circumstances. When her oxygen dropped Thursday night, I couldn't call her. No one could. When she made it to the hospital, her oxygen dropped so far, so quick that all they could do was ensure her body didn't hurt as the virus suffocated her brain. No one could say goodbye, and she didn't get to say hers.

Now we're learning to grieve remotely. My mom has MS, so it's not even a question of gambling on the risks of a family gathering for me to see her. Long phone conversations. It doesn't get easier, but it gets more normal.

Part of me knows that death wasn't something my Grandma feared. It was the inevitable next step in her life, cornered by her body's incapacity to change it. I know she would've preferred for us to be there with her, and for her to have a chance to cry over it and say goodbye to the people she loved, the people that loved her.

Re: 'I am mine': Alzheimer's at 41 (2018)

#62

Post by FiddlerClamp »

Konohamaru wrote: post #16
lqet wrote: post #10

Earlier quoted context omitted.

> good articulation of the circumstances where I would rather die than continue living. I did my alternative civilian service in a nursing home for people with dementia when I was 19. I have noticed 6 stages: 1) Fear that something is wrong with their memory and incredible efforts to hide it (this is usually before they live in a nursing home). 2) Anger, shame and desperation. 3) Internalization, they then either mak…

This doesn't sound all that bad. There are people who lost the will to live in Nazi extermination camps or who died of radiation sickness from the atom bomb. Compared to those two, this is a very pleasant way to exit life.

I visited my father in a nursing home for years when his mild cognitive impairment had turned into full-blown dementia.

There was always at least one patient screaming to be let out, to go home, or that they were suffering in some way. Screaming the same thing, every ten seconds. Hour after hour.

One shouted "Please!" "Please!" over and over again, in a piteous voice.

Those are the ones who still have some speech faculty left. While I know that many were either unaware of anything (like my father at the end), or lived in some pleasant accommodation, there were several who went through agony.

Re: 'I am mine': Alzheimer's at 41 (2018)

#63

Post by ficklepickle »

Andrew_nenakhov wrote: post #46
tmp538394722 wrote: post #18

Earlier quoted context omitted.

This is exactly what Jo from the article wanted. It turns out that in practice it is quite hard to actually get your loved ones to follow through with clandestinely offing you. And the state doesn’t offer a mechanism for any kind of advanced end of life request.

In most countries, it also puts said loved ones on the wrong side of the law. Better take care of it personally while you are still you.

Or extremely traumatized. I knew someone who had to do this and it didn't take the first time. It was unspeakably bad.

Please never attempt euthanasia by overdose. It is error prone and messy. I think nitrogen is the most humane method I have seen proposed.

Fortunately euthanasia is now legal here.

Re: 'I am mine': Alzheimer's at 41 (2018)

#64

Post by fortran77 »

eastbayjake wrote: post #4

> Families of people with dementia land in different places on this issue, but to her, it’s beyond question that Jo is not here anymore; most everything that made him Jo has been stolen. This was very sad, but it's a good articulation of the circumstances where I would rather die than continue living. Has anyone seen a good framework to help think through scenarios like these as part of a will or end-of-life directiv…

I had a cousin with Pick's disease, which is a rare form of early-onset dementia which has similar symptoms to Alzheimer's.

(See https://www.dementia.org/picks-disease-and-dementia )

His sister (my other cousin) devoted a decade of her life taking care of him. (Neither cousin had married). Extremely sad and the effects traumatized the entire family. It is unimaginably sad to see a younger person succumb to dementia.

At no time did anyone even think of assisted suicide. I can't imagine how this can be done fairly unless someone is of sound mind.

Re: 'I am mine': Alzheimer's at 41 (2018)

#65

Post by fjfaase »

bergstromm466 wrote: post #2

Great Julianne Moore movie about early-onset alzheimer's disease called 'Still Alice'.

My late wife suffered from early-onset alzheimer's disease and I went to see this movie and I felt that it was very far from the reality as I experienced it. Yes, it does portrait many of the things that happen to people with early-onset dementia, but what it left out, is often the insight on what the disease has on the people around them, something that Alice in the movie has until almost the end of the movie. I also feel that the movie ended far to early.

Also in the cases that it is not running in a family (which is about half of the cases), it often takes years before a diagnoses is made. Often, people suffer from a burn-out years before the final diagnosis is made. Often, they show major behavioral changes, before they begin to show the first visible changes. In the six years before the diagnoses was made, my wife, who did not originate from my home country, managed to improve her fluency in the national language.

Re: 'I am mine': Alzheimer's at 41 (2018)

#66

Post by novok »

inglor_cz wrote: post #37
masterMiller_ wrote: post #34

Earlier quoted context omitted.

It’s pretty glib to just reduce the idea of intermittent fasting to “you don’t eat.” Intermittent fasting shouldn’t even be seen as some kind of innovation, since it’s essentially a return to how human beings have managed their metabolic processes for tens of thousands of years. It’s actually the idea of eating all day everyday that’s the innovation. We evolved to be hunter-gatherers; we had to chase down and kill an…

I am an intermittent faster as well and IF got my blood pressure back to normal after 17 years of medication. But I have my doubts regarding usefulness of IF against dementias. These are strange, autodestructive diseases. Maybe IF can lower their incidence or push them to higher age, but unlike diabetes 2nd type, I cannot believe it can reverse them.

I think it is more like avoiding large amount of carbs to avoid developing type 2 diabetes. IF, low carb diets and more all contribute to helping avoid damage. I've even heard of Alzheimer's being called 'type 3 diabetes'. Also looking at the victim, he didn't look to be metabolically healthy, along with his wife. Households tend to eat similar.

Also not eating for 4 hours before you sleep and after you wake up is a very low risk, cheap & safe thing to try out compared to many other things. Same with avoid cheap carby things and eating more meat, eggs, vegetables and more non-processed carby foods.

Re: 'I am mine': Alzheimer's at 41 (2018)

#67

Post by bkovacev »

metamet wrote: post #61
mrleiter wrote: post #9

Jo sadly passed away shortly after this article was published. [1] RIP. [1] https://www.macleans.ca/news/canada/they-came-to-celebrate-j...

> Jo was adamant that he didn’t want to end up in a long-term care facility like the one in which he’d visited his mother—sometimes with Robin along for the ride when they began dating as teenagers in Kapuskasing, Ont.—and he hoped that Canada’s legalization of assisted death would allow him to avoid that. But when medical assistance in dying became law in 2016, excluded were “advance requests” that would have permit…

I am so sorry for your loss. As someone that has gone through something similar about two months ago, and who is still grieving, I can tell you that I share the same thought - "Part of me knows that death wasn't something my Grandma feared" - and I believe we are right. That generation of people is extremely strong - they went through much more than we did. Your Grandma stoically handled the nursing home and every conversation with you, but so did you. In a way, I believe she was preparing you for her death. When my other Grandma passed away she told me that I should not worry or stress, but just grieve and reminisce, and that change of generation is required for the world to function properly.

I know the last few conversations you had with your Grandma were at times extremely hard to handle for you, as mine were with my Grandma. I'm making a lot of assumptions here and I apologize if they are off in any way. Grieve, reminisce and once again, I'm so sorry for your loss. I had to comment as this resonated with me on multiple levels.

Re: 'I am mine': Alzheimer's at 41 (2018)

#68

Post by kortex »

novok wrote: post #66
inglor_cz wrote: post #37

Earlier quoted context omitted.

I am an intermittent faster as well and IF got my blood pressure back to normal after 17 years of medication. But I have my doubts regarding usefulness of IF against dementias. These are strange, autodestructive diseases. Maybe IF can lower their incidence or push them to higher age, but unlike diabetes 2nd type, I cannot believe it can reverse them.

I think it is more like avoiding large amount of carbs to avoid developing type 2 diabetes. IF, low carb diets and more all contribute to helping avoid damage. I've even heard of Alzheimer's being called 'type 3 diabetes'. Also looking at the victim, he didn't look to be metabolically healthy, along with his wife. Households tend to eat similar. Also not eating for 4 hours before you sleep and after you wake up is a…

> Also not eating for 4 hours before you sleep and after you wake up

Wait, does that count as IF? I mean yeah, I guess it is called break-fast, but does sleep time count as fasting time? Somehow in my mind it felt like it would "pause" the clock.

Re: 'I am mine': Alzheimer's at 41 (2018)

#69

Post by exhilaration »

zionic wrote: post #41
ransom1538 wrote: post #15

If this happened to me, I would tell my family to kill me in 1 year. We could setup an assisted suicide - I would feel it cruel to force me to live in such a state. If my family refused I would just go sky diving during month 5 and have an amazing decent down. The idea of people caring for me is worse than hell or torture. People should be allowed to die.

A hike alone in the woods with lots of cliffs would work as well.

I mean, maybe, but what if it didn't work that well?

Re: 'I am mine': Alzheimer's at 41 (2018)

#70

Post by novok »

kortex wrote: post #68
novok wrote: post #66

Earlier quoted context omitted.

I think it is more like avoiding large amount of carbs to avoid developing type 2 diabetes. IF, low carb diets and more all contribute to helping avoid damage. I've even heard of Alzheimer's being called 'type 3 diabetes'. Also looking at the victim, he didn't look to be metabolically healthy, along with his wife. Households tend to eat similar. Also not eating for 4 hours before you sleep and after you wake up is a…

> Also not eating for 4 hours before you sleep and after you wake up Wait, does that count as IF? I mean yeah, I guess it is called break-fast, but does sleep time count as fasting time? Somehow in my mind it felt like it would "pause" the clock.

Yup sleep time counts! And you can drink water and coffee and other zero calories drinks. Some say you should avoid zero-calorie sweeteners.

So 4 hours no eating before sleep, 8hrs sleep & 4hrs after sleep is a 16 hour / 8 hour IF fast. Basically don't snack after dinner and skip breakfast.

You can do longer fasts for different reasons, but that is the basic one.

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