6 ms·
The Comforting Fictions of Dementia Care
- nerdponx 8y agoThis was a fascinating read. Also, refreshing to see a story about elder care that doesn't involve some kind of miserable abuse.
- wycs 8y agoI hope to God I have the right to suicide by the time that happens to me.
- melling 8y agoPersonally, I’m hoping we put more of an effort behind solving the problem so people won’t need to commit suicide. Sometime in the 21th century we’ll come up with some sort of treatment. It’s just a matter of which decade. Maybe we should increase funding now? https://thehill.com/opinion/healthcare/392585-heres-why-we-should-put-more-money-into-alzheimers-research https://thehill.com/opinion/healthcare/392585-heres-why-we-s... There are 50 million people with Alzheimer’s and that number will increase significantly: https://www.alz.co.uk/research/statistics https://www.alz.co.uk/research/statistics
- hycaria 8y agoWhy ? Assisted suicide is already feasible, cost is low, and makes room for the (sadly literal) billions of people waiting for a better life. It doesn't sound very moral to me to be willing to spend tens of thousands from insurances and such (so not exactly one's money) on individual treatment, just to get a bit more time for myself as an elderly person.
- jiveturkey 8y agoSolving the problem? You mean immortality?
- paulpauper 8y agoif you get to that point you would probably not be able to conceptualize that anything is wrong. dementia starts mild, so i suppose someone with mild dementia could consent to suicide, but I think most people would hold out in the possibly of a cure or improved treatments
- WalterBright 8y agoMy father had AZ, and knew something was wrong with him through the entire course of the disease.
- ianai 8y agoSame with my grandparents. Though I do hope I have the type of personality to take permanent lack of context/memory with some form of levity. Laughing at the absurd.
- WalterBright 8y agoThere are still interesting, funny moments. Once, I had done something that angered him. He gave me the third degree, yelling at me. I started chuckling. He stopped, and angrily asked why I was laughing. I replied he hadn't yelled at me for 20 years, and it felt oddly good and familiar to have him yelling at me. It was good to have my old man back. Of course, that took all the steam out of his anger, and he soon slipped back into the mist.
- deleted 8y ago[deleted]
- thx4allthestuff 8y agoThank you for sharing. That was a vivid and moving scene.
- ehnto 8y agoNot to be too blunt about it, but why would you need the right? It's not like there would be repercussions. Unless you meant some kind of contract to be euthanized by the state/caregiver if you lost your faculties. That kind of thing would scare me. What if some interviewer decides they think you have lost it when you're still hanging on? We have a lot to learn about elder care in the modern world I guess.
- jbattle 8y agoI suppose there are practical issues, especially once someone has gotten debilitated enough they don't have a lot of personal autonomy or privacy. If it were legal then one could imagine making a autonomous decision and "getting help" with the practicalities.
- gizmo686 8y agoI think he meant the right to be killed moreso then the right to suicide. However, there are other contexts where the right to suicide makes sense, such as terminal illnesses that leave your mental faculty intact. If you are stuck in a hospital bed, surrounded by doctors, with a machine reading your vitals continously, it can be very hard to commit suicide. Even if you manage to, it would probably not be as pleasent as the morpheme overdose a nurse could give you. Speaking from the personal experience of having watched a family member die of dementia, I absolutly agree that we should have a right to die. The only arguement should be about where to draw the line. In my case we had a woman who watched her own mother go through dementia and was very clear in both her will, and in speaking with her immediate family that she never wanted to be kept alive in that state. In addition, by the end, the entire family was in agreement that she should be put down, and (as far as I am aware) every medical professional we spoke with agreed with our decision to put her on a DNR and avoid life prolonging treatments to the extent possible. I cannot imagine that a hypothetical ethics board would come to a different conclusion. Despite this, she stayed alive until she died of dehydration as a result of loosing the mental faculty necessary to swallow when water was placed in her mouth.
- hashmap 8y agoIf a nurse was comin at me with a lethal dose of morphemes.. https://en.wikipedia.org/wiki/Morpheme https://en.wikipedia.org/wiki/Morpheme Yeah, still way more pleasant than any suicide I could manage on my own.
- brandonmenc 8y agoThe scary - or comforting, depending on how you look at it -thing about dementia is that at some point you become a different person, possibly one who no longer desires to die by suicide.
- Latteland 8y agoI thought more states had this, Wikipedia says it's mostly the crazy west coasters again. It should only be a last resort. One grandmother got it, it was devastating for all. If I was in her boat, I don't know how I'd handle it. She just got worse over 3 or 4 years. It also killed my grandfather. https://en.wikipedia.org/wiki/Assisted_suicide_in_the_United_States https://en.wikipedia.org/wiki/Assisted_suicide_in_the_United...
- cmiles74 8y agoEveryone in my family who has lived into their nineties suffers dementia. It is really hard to know what to wish for. Compassionate children, I guess, and the agency for them to do what they think is best.
- escherplex 8y agoSad, but essentially this article is about benign warehousing of individuals with senile dementia in their waning years with a description of bland distraction methodologies employed by institutions. A question arises as to whether the possibility of coupling individually tailored AI with VR headsets or even OLED panels in rooms could be utilized to provide suitable stimulation for these individuals in this state. Reverence was made to Nozick's 1974 thought experiment called the experience machine (his intent then was to refute thesis of hedonism) which was to provide an individual any experiences the person chose, for the rest of their life but one of his arguments against its use was We want to do certain things, and not just have the experience of doing them but as medical ethicist Schermer points out When there is only pain and no capacity left to deal with that pain, to really understand or come to grips with it, nor even to remember it for very long, then the truth cannot contribute to a good life So I see no reason why an individually tailored interactive VR environment couldn't be used to provide these entities with some degree of stimulation to alleviate their sense of depression and frustration.
- trimtab 8y agoBecause the person with dementia does not have a stable level of cognition. It changes continuously. The article mentions this. At higher levels of cognition they will know whatever the simulation is false and it will upset them. Spend some time with dementia patients and you'll quickly realize the issue. Any VR would have to be able to determine current cognitive ability to not cause as much frustration and harm as relief.
- jimduk 8y agoGood point, but it's also the case they forget being upset quickly. My father-in-law had dementia, and as he progressed I found it useful (for me) to interact with him as if he was like an X yr old child (without a medium/long term memory). e.g. If X was 6-8 we would talk about family, have a walk, point things out, express preferences, tell stories. If X was 3-4 we would talk about people and things in the room, discuss food, check he was comfortable, smile and be upbeat. I had much better time with him like this, than seeing other families who were trying to be 'grown up' and have serious conversations. YMMV. Dementia is awful.
- rmason 8y agoThis brought back many bad memories. My mother had dementia, she didn't even recognize me the last year of her life. This is a woman who did the NY Times crosswords in ink, read 2-3 books a week in English as well as French for my entire life. She didn't know who was president or what she ate fifteen minutes before. My dad soldiered on until he had his first auto accident at 97. My sister told him he should give up driving, I helped him sell his car and his condo. He moved into the same home my mother lived in. At 99 he started getting super forgetful, made it hard for me to take him to his doctor appointments. Then he had a severe fall after turning 100. He seemed totally out of it and I thought it was the drugs he had while in rehab. A nurse took me aside one day and said it wasn't the drugs he was suffering from dementia. I got my share of 2-3 am panicked phone calls. He was always upset that he didn't have any money in his wallet. Got tired of telling him he didn't need it. Just started putting a wad of ones in the wallet but he kept either losing them or tipping the waitresses at his meals. Kept losing hearing aids which were expensive to replace. I sincerely hope that they find a cure, I sure as hell don't want to put those close to me through it should I live that long.
- ianai 8y agoI’ve lost two grandmas to dementia now. The first I lost was an RN professor specializing in geriatric care. She said her one wish was to never have dementia/Alzheimer’s. And yet it came for her. It’s just cruel.
- ianai 8y agoI’m hoping more research and ultimately therapies are developed around treating neurodegenerative diseases with psychedelics. A cursory google search seems promising.
- darepublic 8y agoCursory google searches often do
- andai 8y agoIf I ever get dementia, put me on a steady diet of psilocybin.
- anon7429 8y agoMy grandmother, on good days, thinks my mom is her sister, that some mysterious individual is going to buy them all new homes and take her away from the nursing home. Most days though, my grandmother is mean to anyone around. Nursing home staff must grow very thick skin.
- WalterBright 8y ago> If a woman asks for her husband, having forgotten that he is dead, should you tell her the truth and cause her terrible grief, knowing that this fresh bereavement will likely repeat itself, over and over, day after day? I learned that the hard way. My father forgot his father was dead, and asked to go see him. I said he'd died long ago. His face filled with grief. It was awful. I never did that again. I'd just say his father was away on a trip or something.
- DanielBMarkham 8y agoIf a woman asks for her husband, having forgotten that he is dead, should you tell her the truth and cause her terrible grief, knowing that this fresh bereavement will likely repeat itself, over and over, day after day? Or should you just tell her that he is at the office? And is direct lying different from various forms of passive lying—encouraging delusions, or allowing existing delusions to persist? What is more important—dignity or happiness? This is not a dignity or happiness question, this is an agency question: who is charge of this person's life? It gets directly to the definition of consciousness (but not sentience, which is a different animal entirely). My working definition of consciousness is the ability to receive stimulus in such a way that your internal mental model is changed. If you cannot understand your husband has died in such a way that prevents you from keeping that thought in your head tomorrow and continuing with your grief, you are not conscious in the same way the rest of us are. You certainly may be able to speak and move around, but you are not fully awake. You may never be. In this case, and this case only, you have lost agency. That is, others must make decisions for you based on their ability to receive new data and adjust their mental models. That's not the nursing home's job. That's probably a close family member, somebody you trust with your life. It's an evil thing when other people take away your agency. The elevator button appears to make the elevator speed up, but it doesn't. The doctor uses meds as chemical restraints because that's easier for the staff. The emergency responder tells you that you're doing fine when in fact he knows you only have minutes to live. It's evil. There's no getting around it. Somebody is purposefully taking away your ability to make choices by creating a fake universe for you to live in so that their life is better. (Same goes for online forums that give you voting buttons that do nothing, or ghost you, but I digress) But it's not an evil thing when you do it to yourself, when you select somebody to create a wistful fantasy for you to live in for your final days. It's probably the most humane thing we have going for these folks.
- deleted 8y ago[deleted]
- foxyv 8y agoThe thing I hated about the care they gave my grandma is they kept trying to feed her bland shit with a "Low Sodium Diet." What a cruel joke on someone slowly dying of Parkinsons. She was dying for god's sake. Let her eat what she wants! We had to fight to get her a freaking salt shaker. I still feel ashamed that I didn't spend every day bringing her real food and candy. Some of the doctors and managers that supervise those places deserve to go to jail. Hospice clinics are even worse. Just ask the nurses that work there.
- GeekyBear 8y agoI come down firmly on the side of allowing people with late stage dementia to think things that may be untrue but nonetheless make them happy. If a patient is incapable of remembering that their beloved spouse is dead, it's simply unkind to insist on making them relive the death trauma over and over again when doing so has no effect on what they can remember ten minutes from now.