'I am mine': Alzheimer's at 41 (2018)
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[1] https://www.macleans.ca/news/canada/they-came-to-celebrate-j...
"Early one morning, a week and a half after Jo stopped eating, he peacefully exited the world with the people who loved him most by his side. He had not spent a single day in a hospital or long-term care facility."
That he died peacefully really is graceful.
Obviously this tidy philosophy doesn’t mesh with things like murder or other untimely deaths. It just encapsulates nicely why sometimes death is a good thing. And why we shouldn’t fear it.
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.
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.
What you've said means a lot to me. I don't quite have the words to express how much your empathy means, but it's comforting to hear it from someone who has a shared experience.
[0] https://www.wired.com/story/lee-holloway-devastating-decline...
And now I wait in fear it will happen to me too.
That was a great article. Sad I missed the original discussion.
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 directive? I've expressed a version of the above to my loved ones, but I'd like to be much more prescriptive about my wishes to take the decision-making burden off my family should it come to that.
When my mom's dementia progressed from a state where she needed a bit of help to where she needed regular attention, I had no qualms about removing myself from the equation, because I think that if she were healthy she would want me to live my life for myself. If that sounds right to you, it's something you can tell your family.
Per [0], "This Bill would amend the Criminal Code to allow MAID for eligible persons who wish to pursue a medically assisted death, whether their natural death is reasonably foreseeable or not. The proposed changes will reduce unnecessary suffering in Canada. They will also support greater autonomy and freedom of choice for eligible persons, and provide safeguards to protect those who may be vulnerable."
0. https://www.justice.gc.ca/eng/csj-sjc/pl/ad-am/index.html
That’s before you get into the emotional side. How many times a year do you think you could meet your mother and have her not know you from a stranger? No, seeing her every day doesn’t help either - it actually makes it worse for both of you.
Alzheimer’s can be such a slow death you’ve already grieved through “acceptance” while your loved one is still, medically speaking, ‘alive.’
Well, I’ll never finish grieving that loss I guess. I realize all the time that there’s more to grieve. But the shock was certainly not there. The sense of loss wasn’t. That was difficult in itself; to tell people she passed away and not be as sad as people expected. I felt like something must be wrong with me at the time. In retrospect, she had just died much sooner than her body did.
It’s an especially strange human experience I think.
I don't think in the US or Canada there is any way to legally end your life at that point. Maybe nowhere in the world. You would need to end it while still competent. That would be a difficult line to tread because you don't want to forgo good days and with dementia the good days are the ones where you are competent. By the time the days are bad you can no longer competently end your life.
In an ideal world you could specify some kind of ego-distance from yourself where a painless shutdown would be triggered. But of course we are far from having the ability to measure or even formally describe this concept.
I read—within recent memory—"Consciousness and the Brain: Deciphering How the Brain Codes Our Thoughts" by Stanislas Dehaene and was very surprised by just how much consciousness research is being done and how much has been learned. It was really very interesting and I think this research has the potential to make the trade offs between suffering and possible recovery much easier to answer. (This isn't to disagree with you, just to express my surprise that, although I agree with you, researchers actually know/suspect a lot more than I thought they did.)
I think the degree of suffering and misery that comes with death due to attitudes that are imposed on us by our Puritan Christian Heritage is a serious tragedy.
I can't think of a reasonable argument against my position. My body, my life, my decision. And I have the right to make that decision while I'm mentally competent, and have it respected if/when I'm not.
How, if you don't mind sharing? Something like a passphrase shared with a trusted loved one?
Here's one scenario that is feasible today. Imagine an IV drip controlled by a computer. If I enter the correct password when prompted (say once every 24 hours), nothing happens. However if I am prompted repeatedly to enter the password and I do not do so, the IV drip is actuated. The drip contains an end-of-life cocktail.
This puts the onus on me to make an affirmative choice each day to continue to live. If I am unwilling or unable to enter the passcode, that indicates either 1) my condition has deteriorated to the point where I am cognitively or physically so disabled that I cannot remember and physically enter the password, or 2) I am making a conscious choice to end my life.
There is no action to be taken by anyone to cause my death; the decision rests entirely with me, and is effectuated by a machine, not a person.
Or (3) hardware or software defect exists and has been triggered. Fail-deadly systems are usually disfavored for very sound reasons.
Now, I suppose in this situation you could be convinced enough that you are going to want to die so imminently than the risk/cost of an accidental early trigger is acceptable, though.
(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.
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 make melancholy jokes ("My head's not what it's used to be"), or they completely give themselves up. Often they refuse to eat. We did not have such a case, but I assume that some patients in this stage commit suicide.
4) Total confusion (that happens when the internalization is also forgotten), patients still have enough memory capacity to realize that something is terribly wrong (they usually try to return "home" or are searching for their children/spouses/parents), but they don't understand that they are ill anymore. The nursing home where I worked had codes on every door, but in this stage some patients were still able to trick the staff and wander off.
In stage 5), many patients fell into a child-like trance where they just consumed food and watched the world in complete wonder. I never had the feeling that they were unhappy, in fact they often laughed (e.g. when they saw children, when we played songs or when you just sat with them for a while). We had one old lady who happily recited poems she had learned in elementary school all day.
I never want to end in stage 6, but I am quite certain that the patients in that state had no mental capacity left to experience it.
He was in the hospital one time and they had him chained to his bed because they were scared he would hurt somebody. This is a man who never raised his voice to me even at my worst. I talked to him on the phone he begged me to call the police because he thought he was chained up in a barn that was on fire. The way he described his situation convinced me that it felt 100% real to him. The people around him were trying to kill him.
His medications have helped a bit with the hallucinations. He still sees people around his home and it scares him. The worst part though is that as bad as today is, things are going to get worse.
I just took a commercial DNA test because I'm pretty sure I'm at risk for the same end. I'll do what I can (although it seems like there might not be much) but ultimately I'm going to make sure I'm in control of the end.
If anybody here can point me to information or resources on Lewy body dementia beyond WebMD, I'd be very appreciative.
But it looked to me like those were some fairly happy years for her. When she was of sound mind, she was always worried about countless things. Now she was cheerful, watching the world in wonder, and occasionally flirting with a fellow resident.
Most of them do. Unfortunately, we also had some men in late-stage dementia who were pretty obvious about their sexual interests. Needless to say, this often caused problems with female residents. This is an incredibly different topic to bring up with relatives: we once had to tell the wife of a resident that her husband was happily grabbing breasts all day. Whenever something like this was brought to the attention of relatives, it was usual denial at first, and then accusations that the staff was responsible.
That being said, the neighboring nursing home (for old people without dementia) had an incredibly sweet case where a male and female resident, both over a 100 years old and widowed for decades, slowly started a relationship. By the time I was leaving, they were holding hands all day , going for short walks and he was constantly making her gifts of all kinds. They were like teenagers, completely in love.
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.
Think it can be done within two decades?
The mRNA Coronavirus vaccines were produced in under a year.
That was after years of R&D, of course.
Now maybe it’s possible to convince people to spend more on fundamental medical research.
UPDATE
I see my comments are not appreciated. We’re going with “just shoot me if this happens to me”
Anyway, maybe the seed investments by Gates and Bezos will eventually lead to a treatment.
https://www.biospace.com/article/bill-gates-and-jeff-bezos-t...
However in the meanwhile, there is unbelievable damage and burden on family members that the sick person least of all wants, as articulated by Jo when he still had his faculties.
And there’s a long tail of other diseases. I believe we’ll make progress on those too, but this does not preclude mercy for the victim of the disease.
Sure, we’ll make slow progress and eventually get a treatment. However, this is likely a very difficult disease to treat.
I’m simply pointing out that we have another option to make faster progress.
Not an early onset case, of course, but I remember receiving the exact same Christmas gift from my grandmother two times in a row. Each time she seemed delighted about the gift idea. Everybody just joked that she bought too much of it initially and was now slowly clearing her storage. After another 3 years without any obvious symptoms (she took care of the house, drove her car, went shopping, used her bank card, managed all correspondence with banks and insurances), my grandfather mentioned to her something that implied that her mother was dead (she had been for over 15 years). She didn't remember and had a complete breakdown.
Being affected by this when you are 40 is just heartbreaking.
If you study history, you have to reconcile these views with the fact that we've been wrong about every medical development until recent history. At one point we were killing cats to curtail the black plague, when in fact it was the fleas that were the cause.
We just don't know. And it's fine not to know. https://www.youtube.com/watch?v=42QuXLucH3Q
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 animals for sustenance, and there was no reliable way to preserve that food. Which means that we are adapted to eating once or twice during a day, probably during the daytime, when our bodies are meant to be active, and then abstaining from food. It’s the relatively recent innovations that changed the way we handle our metabolic processes, like having food available all day and filling it with sugar, that are responsible for the proliferation of things like obesity and diabetes, which our ancient ancestor just didn’t have to deal with to the extent that we do, because their diets were more “natural” and less maladaptive compared to ours.
All this is to say that when we’re talking about our diets from a normative point of view, we should think of intermittent fasting sort of as the null hypothesis, necessitating a rebuttal before it can be refuted, and our modern way of stuffing our faces all the time as the alternative hypothesis, requiring justification before it can be accepted.
For a healthy adult it’s probably more sensible to consume one’s diet within a reasonable window, say 8 hours per day, than to be constantly digesting the hyper processed, over sugared nonsense we put into our bodies nowadays, to the point where it overlaps with things like our sleep cycle and when we get our exercise in.
Of course, I’m not a physician, so don’t take my word for it. But you should consider the fact that formal research is increasingly coming to understand the benefits of IF; OP’s link is only one example. We don’t understand the full range of benefits that IF provides because modern medicine, in the grand scheme of things, is still pretty much in its infancy; we’ve existed for approximately 200,000 years, but we’ve only had modern antibiotics for less than 100. But it can’t be denied that so far, things are looking pretty good for intermittent fasting, at least when it comes to its suitability for “healthy” adults.
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.
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.
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.
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.
Of course, I’m not a doctor, I just watch YouTube videos xD
It's actually fairly hard to get enough protein with a vegan diet unless you're eating beans, soy and vegetable protein extract and it's easy to fall into eating a lot of carbs and vegetable oil with some vegetables for flavor.
Yeah definitely, I wasn’t trying to claim it was some sort of panacea. I’d be surprised too if it helped cure something like Alzheimer’s.
Still, we’re learning surprising things about how our bodies work every day, and how seemingly unrelated parts are actually very interdependent. For example, we’re now seeing that the bacteria in our guts, our microbiome there, has a range of ways it maintains our health beyond just serving our digestive tracts.
I’m all about rigorously testing the hypothesis over time, but the safety / risks of the intervention has been well studied for a very, very long time.
“Might help and extremely unlikely to hurt” is not a bad basis on which to decide to take up IF.
You're right. As a species, we are wrong nearly all the time. For all the things we know, there are dozens of theories that were contemporaries or predecessors of the correct answer as we understand it now. You are entirely ignoring that our understanding does generally get progressively better until we fully understand the subject in question.
> At one point we were killing cats to curtail the black plague, when in fact it was the fleas that were the cause.
You're right, the cats were not the direct cause, and doing so may have even increased the spread of the Black Plague by allowing rats to spread more quickly.
On the other hand, blaming the cats is much closer to the actual answer than what we would have assumed 500 years before that. Namely that some deity was angry at us, and the only way to stop it was to offer gifts to that deity. And treating it through "humors" was a bad approach, but again, much better than guessing that the person had been cursed by a deity and that their survival hinged upon making good with that deity.
Our understanding is progressive, not binary. Our correctness is binary (i.e. we're either right, or we're not), but our understanding usually comes in steps where we slowly get closer and closer to the right answer. For fasting and dementia, who knows? We might be right, and we're at the end of the tunnel. Or we might be wrong, but hopefully one step closer to figuring out what's actually going on.
> We just don't know.
This part I really don't like. There's a difference between "don't know" and "can't know". Assuming you place some level of inherent value on knowledge, it would be optimal if we did know all the things that can be known. Even if you don't place inherent value on knowledge, some knowledge is useful, and surely we should seek to know those things? It's just difficult to determine whether a particular piece of knowledge has use or not. The Planck constant doesn't strike me as particular useful, but I'm almost positive it is to other people.
> And it's fine not to know.
I also heavily disagree with this part. People are, quite literally, dying in a way that is unimaginable to most of us. Getting dementia is a terrifying thing; it's one of the few things in humanity that can make you entirely lose "you". I've lost several relatives to dementia, and it's heartbreaking to watch. Just alternating periods of dementia where they're practically not there, and periods of clarity where they're terrified about what's happening to them. Death truly is a blessing to someone in advanced stages of dementia.
"We just don't know. And it's fine not to know." reads like some late-stage depression that has manifested itself into nihilism. There are tons of corollaries that are probably a lot less comfortable, but with the same implications. "Famine has always existed. And it's fine to not help.", "Racism has always existed. And it's fine to be racist.", "We've tried to stop child abuse and it hasn't worked, so it's fine to stop trying.". Just because something is currently true does not mean it will always be true, nor does it mean that trying to change it is futile.
I'm not particularly religious, but your response does remind me of the beginning of the serenity prayer:
> God grant me the serenity > To accept the things I cannot change; > Courage to change the things I can; > And wisdom to know the difference.
The most important part of that to me is the wisdom to know the difference. I fundamentally believe that dementia is something we can change, given enough time and resources. That makes it something worthwhile to pursue.
So far the answer is no considering how unavailable death with dignity resources are in most states. Ironically it's religion that is blocking the fruitful discussions.
Tragic. In my country no form of assisted suicide is yet legal, but I've watched my grandmother languish and waste away like this and--should it come to that--I'm firm in my resolve not to subject my family to anything like that experience. People need to have the right to choose to end their own lives with dignity; is "death tourism" a thing?
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.
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.
So far all seems well with my dad other than some expected age-related slowdowns in memory and processing, at least from my perspective. I can’t imagine what it would be like to deal with this so early in life.
I read “Being Mortal” by Atul Gawande this year and it was very helpful in some of the conversations I’ve since had with my family about the future and how we should think about death. I wouldn’t have had the courage to ask my parents what they cared about in life and in death before reading the book, and for that courage I am grateful. I recommend it to everyone because death is the only fate we all share.
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.
2 other very good movies are the Canadian "Away from Her" and the French "Amour". But the plot twist of these two is that they are a view on the ones that remain and see their loved ones fading away.
My wife's father (my father-in-law) passed away just 2 days ago at 75 years old with severe dementia due to a series of mini-strokes in his brain over the last ~5-6 years. I can't remember the medical term, but due to weakened and brittle blood vessels in the brain from plaque build-ups within the vessels. Doctors said he was in perfect health other than this single reason. With each mini-stroke, you could see him get knocked down step by step. He'd recover a little, but never back to baseline (which kept getting lower).
Seeing him go from the strong-handshaking, always smiling Minnesota corn farmer patriarch who regularly would outwork me when I'd be helping him with house projects....to seeing him take his last breath surrounded by his wife, 4 daughters, several granddaughters, and me...was heartbreaking.
...from the article, Jo was 40 years old. I'm 47 as I type this and cannot comprehend that happening so early.
My grandfather died like this of Alzheimers. My dad vowed to not follow his path should it come to that.
One of medicine's most elementary failings is [not] providing a reasonable framework for death in these diagnoses.
Edit: Perhaps I should clarify that vaccine and mRNA based treatment approaches for Alzheimer's aren't exactly new and have shown some promise in the past.