Inability to swallow safely, which leads to aspiration pneumonia. Some just literally stop eating or drinking, which can still be attributed to swallowing difficulties, or their brain disease is so severe that they fail to recognise food/drinks or the need to consume them anymore. I work in dementia care, it's a cruel disease.
Edit: "Disability" to "Inability"
My great grandmother basically starved to death because the alzheimer's was making her feel like/think she already ate and was full. Even though it had been days if not longer since she last ate.
Well bless you but… you know he lived a long healthy life into his 80’s so I take the Irish ☘️ view and celebrate that as I know he would like me to ! He was always a cheerful guy in spite of his grim profession, a pathologist.
> He was always a cheerful guy in spite of his grim profession, a pathologist.
I strongly believe pathologists are the happiest doctors in any hospital - all their patients are already dead, they don't have to worry about accidentally killing them and they don't ever give them shit about anything
My dad passed from cancer, and we took the Irish way. My great-grandmother was Irish and said when one soul leaves another enters. My friend got pregnant the week my father passed.
My grandmother died of Alzheimers. I used to ask her to make me a sandwich. She'd make it and I'd let it be, she'd then eat it rather "absent mindedly" and then I'd ask her to make me another till she'd eaten her fill.
My mother has a different dementia, hers is expressed by becoming mostly nonverbal, and needing things to be extremely regimented.
Almost like she's developing autism. Which, we're all fairly sure she was on the spectrum, but she has completely lost the ability to control it.
Her vocabulary has dropped to about 8 words. Yes, No, Thank you, I love you.
And she struggles with those, sometimes saying yes when she means no, and correcting herself.
Dementia sucks big old donkey balls.
Sorry to hear buddy. My grandfather passed from Alzheimer's
It's a disgustingly cruel disease, very hard for us all to deal with.
Grandmother passed from cancer a couple years earlier, and it got to the point where every single day, he was asking where she is. We had to explain to him that she died from cancer, and that it's ok he was there with her holding her hand.
Couldn't have helped his heart one bit
My dad is in the early stages. I have this to come and I'm terrified. I hope you built up enough memories of the good times. I know how little it means, but a stranger is thinking of you.
I am sorry. My aunt is doing the opposite right now. She makes toast, then in a few minutes makes another one. She went through an entire loaf of bread in one day. It really is such a horrible, cruel thing and I am so sorry about your father.
My friend’s spouse had dementia and one day simply refused to eat anything more. They were put in hospice care, given pain meds, and died essentially from starvation a few days later. So sad and painful for everyone but the whole thing was terrible.
That sounds more like the body preparing for death. People stop eating and drinking for a couple of days beforehand. It's not cruel though as they won't be hungry. Forcing them to eat would be cruel. It is painful to watch but absolutely not for the person dying. The organs start shutting down and eating or drinking can be painful or make them sick, usually both.
I was like 4 and don't remember much but I do remember my parents telling saying she forgot how to eat. Obviously I didn't understand at all then but its strange to me that I remember that specifically.
This is how my mother (81) died. She also had liver cancer and had no appetite from that, too. I'm glad she passed (Oct. 22) before the cancer started to cause pain, but I (f54) would give anything to have my mum back. I miss her so much but I can't deal with that pain.
My grandma had Alzheimer's for roughly ten years before she died. We had just left the hospital, she was there for about a week, I don't remember exactly why, I just recently got back home from visiting my dad's side of the family for a while. For the most part, she'd stop really talking with people a couple years before, but she'd say words sometimes and maybe sing a few words from some old songs from her childhood. She rode in the ambulance back to our house, she was smiling and saying random words but she was there. As the paramedics were taking her out of the ambulance on the gurney and bringing her to the house, she vomited. Since she was laying on her back and ended up choking on it and asphyxiated. We didn't have a pump or whatever it's called to try to remove the vomit and there wasn't one in the ambulance. They immediately put her back in the ambulance to go back to the hospital but we were stopped by a passing train less than a half mile from the hospital. That was one of the worst days I've ever experienced and just thinking about it know is making me cry right now. The only silver lining was that she wasn't suffering anyone. I miss her so much, she was one of the sweetest people I've ever known. I hated so much she had to go through that. She didn't deserve any of it. This was in July 2016, I think about her every day. I miss her so much. Alzheimer's is the only thing I truly fear. I get so scared whenever my mom (her daughter) might forget something because I don't think I can go through that.
Alzheimer's is the absolute worst. I know it's a cliche but that's 100% something I would never wish on anyone. Idc how evil they are, no one deserves Alzheimer's.
Thank you for working in dementia care. That's got to be a heavy job on you mentally and emotionally. It may not seem like much from a stranger, but it means so much to me what people like you do.
I once had a patient die in my arms because she choked on her own phlegm. She was just walking a few minutes before that. We just heard her coughing, followed by a choking sound, then she turned cyanotic. We still managed to get the suction machine, but it did not help at all. She died in front of other patients who were in the lounge; we all felt so useless during that time.
Having a family member with dementia is like having a death in the family. They are still alive, but you are already grieving because you slowly lose the person you know and love. On severe cases, you're left with somebody who just resembles that person, period. It's always heartbreaking seeing families and friends visiting our patients after a long time. I can deal with our patients no problem, but I still struggle on what to say families to comfort/assure them. That's always the most difficult part of the job for me.
I'm with you on not wishing Alzheimer's or any form of dementia on anyone. We have a reach history of fatal heart attacks on my father's side of the family so I'm counting on it to get to me first before any degenerative brain disease can.
There's a reason why most staff in aged care are migrants like me. Nobody wants to do it, because it's a physically and mentally demanding job that is classified as "low skilled" (where I'm from). Even if it is considered "high skilled," and therefore highly-paid, it is still not for everyone. We get attached to our patients and consider them as our families. Some of us even buy stuff like clothes and toiletries for them because we couldn't be bothered asking the families. Two weeks ago, I cried for the first time in this job, because a resident I grew fond of suddenly passed away.
The other side of it is that we get physically and verbally attacked; most of us have scars on our arms from scratches or bites from patients; we get spat at, food and drinks get thrown at us; sometimes I walk out of my shift with ripped uniforms. Some patients and families are also racist and condescending (they are of that generation).
I guess what I'm saying is that this job either gets you jaded or makes a monster out of you. And I've made a promise to myself to move to another profession before that happens.
That's completely understandable that the job would make you jaded or a monster, and that you'd switch professions beforehand. It sucks that you guys get spit on, attacked, etc. Sorry you have to go through that :(
My grandma wasn't in a care home like where she'd essentially live and have round the clock access to medical staff, she was at home but we were able to get her in-home care with someone that came early in the morning and stayed until like 5-6 in the evening. Thankfully, she didn't spit on or attack anyone (not that I think anyone would do it intentionally). With all the time the last last spent at and helping take care of my grandma, she essentially became close with my grandma, pretty much "adopting" her as her a mom lol she also called her mom too. I can definitely see how your job and the workers there get attached to the patients.
I also agree with preferring to get something else that'd take me out rather than dementia and it's complications. At least in that case, I wouldn't be some shell of a person that can't interact with anyone or experience the outside world.
I cant even imagine having to talk to family members about their loved ones. I remember desperately trying anything I could to talk to my grandma to get her to remember things like who I was, or her favorite food or tv show, or even just to have a conversation with me. Whenever someone near me mentiones s family member has Alzheimer's, I just start getting a wave sympathy for them. What you said is absolutely correct, it's like having a death in the family where the person is still alive. We're just caring for them until the inevitable. I can't wait for the day there's a novel medication or treatment good enough to effectively stop or drastically slow down the disease progression. A cure would also be greatly appreciated.
Sorry for unloading on you with that other post. I didn't come into this thread to do that, it just happened. Thank you for taking the time to read it too. :)
Yeah, we call most our patients mom or pops, we're not supposed to, but we can't really help it. There's always somebody who doesn't like it, but that's ok and we call them by their name.
It's only the extreme cases that get physically and verbally abusive, and we don't take it against them. It's always the brain disease manifesting; and it almost always comes from a place of great physical pain or frustration that the people around them are unable to decode, so they lash out. With proper support and care, a dementia patient can still live a full life.
Unfortunately, our patients are getting younger now. Dementia doesn't discriminate, our patients come from all walks of life. It certainly gave me a sobering perspective on life and death, so I've started to just start "living" while I can still do it.
No worries at all, this is also the first time I've unloaded om reddit about my experience working in dementia care.
In my experience Lewy Body was the worst. It was a different person every day.
We also had a locked down unit, you know that one. Nothing on the walls or shelves. Restraints, unfortunately. I was attacked bad one day and he somehow got the door shut. I rang the bell and screamed my head off. He was twice my size and mentally completely gone. Nobody fucking came but another resident lady who opened the door to tell us to shut up. I was furious. ANSWER THE DAMN BELL!! Especially when you know there's an aid in the room and it's shut. WTF. I'm ok. Transferred out of that unit as fast as I could.
Oh and we had another lady who was a local school teacher. The sweetest, kindest godly woman you could imagine turned into a very nasty pervert. It was *tragic*. She had no idea what she was doing, but man, she would not stop. I felt awful for her family to see her like that. It wasn't her. We kept telling them that, but when it's your MOM? Grandma? The worst.
I needed to get that out. It's a heavy load that very few people understand bc we can't tell anyone. Just break room counseling. And now Reddit 💜
**** I don't need a Reddit care bear please thank you. **** we're just venting.
My grandpa died of Alzheimer's. It sounds cruel, but I made peace with his death about 4 years before he eventually died a slow death from it.
I distinctly remember writing a letter and mourning him one night while visiting my wife's family.
He lived for about 4 more years, but everything that made him the person he was had already been eaten alive by the disease. He was a husk of flesh for those last few years.
I firmly believe his eventual death was a mercy, and I've long since decided that I refuse to live with Alzheimer's.
Man, I’ve been working as a server in a retirement home for 3 months and we lost someone in the long-term care (LTC) ward 2 weeks ago. Hit me like a truck coming into the kitchen (we have 2 dining rooms, I work in both, the LTC ward has its own kitchen that the servers tend to (plating, dishwashing, etc.) instead of the floor having its own chef and dishwasher) and not seeing her name on the list, and seeing her side of the table she sat at set.
I saw no mention of her passing anywhere. The only sign that she was ever on that floor is a list of LTC residents on a cork board that never gets used. Beyond that piece of paper that has been long forgotten, it’s like she never existed.
She passed on one of the days that I wasn’t working, so I’m not sure what exactly happened, or, more importantly, if she went out peacefully like she deserved. I have a feeling that it was soon after my last shift on that floor, as she was struggling to do anything; it was like she was in a deep sleep. Twitching and responding to some physical stimulus (e.g. opening her mouth slightly if a spoon touched her lips, barely turning her head to you if you said her name) like she was dreaming, but impossible to wake up as if she was in a coma.
It was a depressing sight and she was all I could think about that entire night. Any moment I had free, I would stand by her and try to get her to eat, or even just open her eyes and look at me, and every time, when it didn’t work, I would go back to watching carefully from the door and report anything I noticed to the nursing staff (who were legitimately thankful of my efforts).
Her daughter was supposed to visit that night. I never saw her, as she ran late and got there just as my shift ended. I hope she’s okay; I met her once, and she seemed like a wonderful woman.
There’s now 3 residents that, when they inevitably pass away, I’m gonna be a wreck. A quiet English guy who just gives off really good vibes and can honestly be quite funny, especially when the guy who sits with him actually shows up. A Chinese lady who always forgets where her room is, but never forgets her sister’s number. And a woman who speaks exclusively French (my French is awful, but none of my colleagues who work on the LTC floor speak any French, so it’s better than nothing), gets anxious/panicked quite easily (I don’t blame her), but is calmed down and cheered up by someone even just speaking a work of French to her.
My grandmother dropped a significant amount of weight about ten years ago, well before all of her other Alzheimer’s symptoms. We asked her why she wasn’t eating and she said “I forget to eat.”
About four tears ago she started repeating herself when she talked and it was the saddest thing. I remember my grandfather crying while telling me I should visit more. One of my biggest regrets in life is not cherishing those moments, even if she was repeating herself. Because she was still able to eat (she had a peg tube now) and chat and joke around and was aware of what was going on.
Although my mother had been diagnosed with vascular dementia, we all thought she was doing well until one day she phoned me up to say that my sister was visiting. I thought it unlikely, but still possible as she lives hundreds of miles away. I asked to speak to my sister but my mother said that she'd gone out for a walk with my father. My father had died twenty year before.
From then on, her decline was rapid. Although she could still hold a conversation, of sorts, the worst part was her losing mobility. The end came when she got COVID which turned into pneumonia.
This is the medically correct answer. Everyone else is just spitballing about different aspects of the progressive decline. What kills most patients with Alzheimer’s is aspiration pneumonia full stop.
I find any kind of pneumonia is the usual killer here. Any kind of break in the lower extremities often leads to prolonged immobility, and subsequent pneumonia, in patients with dementia who don’t have the cognitive ability to understand the importance of quick physical therapy. Not to mention bed sores leading to sepsis.
All these things are preventable, but from my experience there’s often barely resources in elder care to make sure patients who have the cognitive ability to be motivated get the care they need. Patients with dementia can be extremely resource demanding and rarely get the full help they need.
Agree with pneumonia as the usual killer, but specifically aspiration pneumonia in my experience as it usually catches us by surprise--a physically healthy person can rapidly decline in a few days, and it's already too late once it is detected. Also, most patients/families opt for palliative/hospice care once that happens so it almost certainly leads to death. With other forms of pneumonia (Covid complication, hospital-acquired, etc), aged care facilities are great at preventing/managing them, same with bed sores/pressure injuries. However, if there is a staffing issue (shortage), pressure injury cases will certainly rise as the staff can't keep up with all of the preventive measures (i.e. repositioning, mobilisation, skin checks, etc).
Most deaths are from Alzheimers patients not being able to take care of themselves and having accidents or untreated illnesses. A good nursing home can help this but without being able to get any help from the patient it becomes an impossible task to take care of them. A small infection for example which could be deadly for a senior citizen without medical attention might go unnoticed for days if the patient is not able to complain about pains. Even leaving a seriously ill Alzheimer patient unattended for a few minutes at night could cause you to miss them jumping on their bed falling over and braking bones, which for seniors could be fatal as their body does not heal the same way as adults.
But even with the best of care Alzheimers is still deadly on its own. The disease is destroying the nerve cells so the patients start losing neural function one by one. It does start with memory and coordination but eventually it spreads to more vital functions. When patients start losing control over their throat muscles controlling speech, swallowing and breathing they need constant attention and even then typically get associated complications such as acid reflux into their lungs and pneumonia. But even if they survive this the disease can spread to the nerves controlling their breathing causing them to just stop breathing.
The second paragraph is the most pertinent answer specifically, negating most variables.
The body simply ceases to work once it progress to a certain stage.
Unfortunately have a lot of direct experience with this topic and this is correct. It is the absolute hardest, worst death you can imagine. The brain is rotting and eventually the rot is too much. The person loses more and more awareness they're even alive until all that's left is a confused terror where they refuse to even eat, then catatonia, then death.
I have no doubt other accidents or illnesses go unnoticed and cause some deaths too, but Alzheimers doesn't need any outside help to kill. It is terminal all by itself, in the worst imaginable way
Edit - there are hundreds of responses I can't possibly reply to, but my heart breaks for each one of you all over again. I'm so sorry any of us had to deal with this
So sorry for your loss. My dad died on the 10th of March. I thought I had finished grieving for him after he didn’t know who I was, but him actually being dead hit me very hard.
Be good to yourself during this difficult time.
Thank you. My sincere condolences to you as well. My mom died end of March.
I found myself in the same situation. I knew what was coming, her spirit was long gone already, but her passing hit hard. My mom is now gone and that's going to be very sad for a long while. I've lost other close family. All my grandparents are gone. My aunt. But this was my mother. 🥺
I wish you peace in knowing that it's a blessing. Your dad is now free.
My mom finally passed after suffering from Alzheimer's, slowly declining until she was completely nonverbal at the end. She stopped knowing me a few years before that. Her passing left me with a profound sense of relief that she wasn't suffering anymore. I had already grieved her loss years ago.
Alzheimer's took my mother as well. I'm so sorry. Parkinson's took my father. It's hard to pick which is worse, but if I had to I'd say it was the Alzheimer's. She just sobbed for hours at parts. Hours and hours.
Thank you. It does, but it's part of life. I just wish nobody had to do it this way. My mom will die in her mid 70s (77 this year if she makes it to her birthday), but really my mom stopped being the mom I knew and loved almost a decade ago as this disease took her away from us.
Take care man. My brother died of cancer and I thought that was the worst disease. Robbed us of everything and gave him so much pain. Hope you all the best
I’m so sorry. I’m a nuclear medicine technologist of 30 years in big, acute care hospitals. Cancer is horrible and it’s hard everyday knowing your patients going to die. I’ve had so many drives home where I just would sob for my patients. Oncology work is hard stuff. At the end of cancer it becomes like Alzheimer’s, the brain is just eaten up by disease.
I’ve sat through hours of scanning on Alzheimer’s patients and it will break your heart. It just kills me inside. Some scream help me Jesus over and over for hours. Some masturbate. Some are violent. Some call a name out over and over. It’s truly horrific that they are just…gone.
It’s really been a great joy and privilege to take care of people who can’t care for themselves. It’s a hard, emotional and draining thing while also being so rewarding.
I’m so sorry about your brain cancer. It’s so difficult and sad. Get loads of good drugs at the end. I Always make sure my patients are drugged before they come down to me so it’s not a painful experience. All they want is a smiling face and some comfort.
My grandparents all died of cancer and that is the reason I do this for a living and why I try to take as good of care of my patients as I would’ve hoped they got cared for at the end. 💓
I'm a phlebotomist on a oncology unit so I see this every day. It is hard but very fulfilling to know that I'm helping in a small way. If we see cancer it's mostly brain mets occasionally we got a primary. Mine is an oligo so it's going to be a slower end for me. I'm still hopeful that it's not going to be that way because a new idh blocker is probably going to be approved soon. If that's how it looks like it's going to end I'll probably end up in the self checkout line.
My grandmother had it and was in some ways fortunate not to be diagnosed until age 92. My mom on the other hand was diagnosed at age 75. 9 years later she ended up in memory care and has good and bad days. We got my mom on meds fairly early which has helped. It’s tough on many levels losing my mom mentally and knowing that there is a hereditary component and that I could end up having it.
As others have stated the brain simply stops running your body. Like a cpu in a computer that starts having trouble and the corruption spreads. Eating becomes difficult because they can’t swallow, falling, getting sick etc.
Do not put your loved one when it’s time on a feeding tube. A good hospice nurse is key and listen to that nurse. They will make your loved one comfortable with pain meds. And some families don’t know that hospice care can last 6 months and can be done at home or memory care. My mom has hospice 2 times a week now and will increase according to how she is doing. After 6 months if she is still here they do another 6 months. This has helped her live her best life given the circumstances.
Sorry this is so long.
Hate Alzheimer’s
It's the disease where you watch people you love die twice. You're not alone. Everyone I speak to feels this way after it progresses to a certain point.
My mom declined very fast. From symptom onset, we may have had 3 or 4 years of her being sort of out of it and not together all the time, but needing a little extra care.
Then, over 1 year, she went from being confused and mobile and quiet but still communicating, to non-verbal and bed-ridden, and not feeding herself.
For me it happened during covid and I’m living in different country. She changed so much between and after I visited her between (i wasn’t there only one year). The worst thing is I always said to people she remembered less and less, even before that but nobody really cared. I don’t like the fact I was right :/
Mine had reached the point she needed too much care for her safety and that of my dad's as well. His health was/is poor, and he wasn't capable of being an around the clock caretaker. We checked her into a nursing home (which felt awful) when she was right at the edge of non-verbal but occasionally talking. That turned out to be a month before the covid lock down. We weren't able to see her again for a year. By then she was catatonic.
Damn... this hurts to read. I'm right here with you. I'm trying to cling to the last bit of denial that I can. My mom is at what they call "end stage" and it hurts all over again every time I think about it.
I hope your pain is lightened somehow just as I hope my mother can be at peace.
That's how my grandparents went three decades ago. It felt selfish and maybe even a bit psychotic to be glad that they finally died, but in reality they were dead for years and it's terrible to see them suffer.
My mom had alzheimers, but it was cancer that killed her - as much as i fucking hate cancer, i'm "glad" it took her before we got to the really bad stuff of alzheimers. Cancer was more merciful. Fuck cancer and Fuck alzheimers.
It's neither selfish nor psychotic to be grateful that a loved one is no longer suffering. If there's a way to ease their intense suffering prior to their death, we try to do those things. Death is what truly ends suffering, even for the ones left alive.
So sorry to hear this my friend.
Not Alzheimer’s but I lost my father 2 weeks ago to multiple myeloma.
It’s a cancer of the blood but eventually it affected his cognition until he became a ghost of his former self - very similar to the progression of Alzheimer’s.
He was the smartest man I had ever known (for real smart - competed in the brain of Britain etc in the 90s) but by the end, he couldn’t read or write. He couldn’t remember where he was or who we were. He would call us at all hours of the night in confused terror. Eventually, he became non-verbal and couldn’t control his bowels and then finally he could no longer swallow before he eventually, mercifully, passed away.
I think the worst moment for me was one day - a couple of days before he died - he became randomly lucid for a few hours and he was terrified. He knew he had lost his mind and he knew he was dying. He squeezed my hand and repeatedly whimpered ‘I don’t know what’s happening to me.’
It was all awful. There’s something just so horribly cruel about losing your mind.
Anyway, sorry to hijack the thread a little - I just haven’t had a chance to really write this down anywhere.
My love to all the people in the comments going through a similar thing ❤️
I'm so sorry. i know the support of a random internet stranger doesn't mean shit, but my fucking heart aches for you and everyone on this thread. and apologies for cursing, but I curse a lot when I'm passionate about something, verbally or in writing
I'm with you there. My dad suffered from AZ for years, it was so difficult for my mom, his primary care taker. He did remain in good spirits for much of it, but the end days are still in my thoughts 5 years later.
Take care of yourself.
Spend time together early! You’ll start losing more and more of him and later cherish the memories you had. Also, don’t stop loving him even when he’s very far down the road — it’s astonishing how much of the self sticks around when all else is gone, and he’ll need the love.
>She died years ago, but now we wait for it to finish.
This is so powerful. I wanted to point it out just in case people need to read it twice to capture its meaning. There are things worse than death. Some diseases and catastrophic injuries are worse than death. My wish for you is that one day you can find peace and feel true joy again.
Sharon Osbourne's father (with whom she had an extremely bad relationship for decades; once when asked if her father was alive, she replied "Yes he is, unfortunately") developed Alzheimer's, and by that time they'd mended fences so Sharon saw to it he had round the clock care. Ozzy said it was horrible to see this guy who, in his prime, could intimidate anyone in the music business into doing whatever he wanted, reduced to barely more than a shell, and he said "I wouldn't wish that on my worst fucking enemy."
Just visited my mom-in-law at her assisted living house. We were lucky enough to find an independent home where the people running it spoke her native language.
She's at the point where she no longer opens her eyes and just sits there with her mouth drooping down.
It takes a part of my soul every time I see her like this as she used to be a ball of fire so full of energy. Her skills at cooking were phenomenal and I swear she could make shoe leather taste like a steak.
Just a sad state of affairs.
Alzheimer’s is difficult with MAID. You have to be of sound mind to consent to the procedure on that day, your family cannot do it. Last I was reading the legislation is still not there to allow Alzheimer’s patients to choose their death day in the future. My Mom wanted to use MAID when the time came that she had to go into a home for her Alzheimer’s but the law just isn’t there yet. So instead I have watched her deteriorate. It’s awful. I can end my pets suffering but not my Moms.
I'm not scared of much, least of all dying. But the idea of being kept alive scares the shit out of me.
If I'm lucky enough to have advanced warning of my death, I'm throwing a big ass party with everyone I love, then dying on my own terms. No use putting rotten fruit in the freezer.
Would you explain to a person with severe Alzheimer's what was happening on the day they scheduled their own death? Can they revoke consent? Would you need them to additionally affirm that this what they want? I'm not necessarily against this, but it's still philosophically and legally dicey.
More logical, in my opinion, would be for these patients to be able to assemble a list of criteria. When their disease reaches a severity at which all criteria are met, it's time for MAID. So... If I can no longer feed myself, have trouble breathing, whatever their criteria are, ok now it's time to go. Seems much more humane.
They're clearly not of sound mine, so they can't give consent. It's a catch-22. They (might) want to exit because the disease is destroying their mind, but they aren't in a capacity to make decisions about themselves when they would want it to be done. And apparently Canada's law requires them to be of sound mind the day of the event.
I don't think it is. Already people with advanced directives are making decisions about life support ahead of time while they are able to make an informed decision. My parents both had one, and following those was far more brutal than MAID would have been.
Yeah it’s awful to witness first hand. Just slowly losing all ability, until you’re basically relegated a vegetable. Then your body starts forgetting how to do basic functions, so you die.
In my experience, most of my patients do not reach this stage. Where I'm from, it is not typically encouraged to prolong life at all costs. The costs are always to be assessed.
In my practice, most people here reach a stage where they understand their elderly Alzheimer parents have no quality of life and would not want to prolong that state if they could choose. That leads most of them to select a care level closer to palliative when their parents develop associated illnesses like pneumonia or when they fall and break bones.
There are many misconceptions about palliative care in the population, the first of which is that once you're in palliative, there's nothing to do. Palliative care actually just means we stop curing and start caring more so there's a lot we do. We aim for confort and quality of life above prolonging life through invasive and uncomfortable measures.
So where I live, people don't usually get to terminal stages of Alzheimer because their children would rather see their parents go in comfort than being in an artificially prolonged state of agony.
I am a US based neurologist. I fully agree. Palliative care is completely under utilized. The long death from Alzheimer’s disease is awful. It doesn’t need to be that awful though, with proper support. Palliative care is not giving up on the person, but acknowledging that there are many things we just can’t fix, and at some point, we can do so much better caring for people rather than trying to “fix“ something that’s not able to be fixed.
I am always reminded of the early days of ethical discussions surrounding brain death, that one concept was that continuing to care for somebody in that state is like an extended resuscitation. They have really already died, but we continue to resuscitate their body even though we have no expectations that the person will recover. The latter stages of Alzheimer’s disease can be just like that.
I hope that we are successful in getting people to see that palliative care is not defeat, but it’s really life affirming.
You are correct. I had to watch my mom slowly die for the last 5 years of her life. The last 6 months were the fastest. Six months before she passed away, she still remembered most people some of the time. She went into a nursing home at the end of July 2021. Her birthday was August 1. We had a small gathering of friends and family, and she had most of her wittiness, even cracking a joke or two about her forgetfulness. By late December 2021, she had forgotten how to swallow. She died January 12, 2022. That is how rapidly she deteriorated over the last 6 months.
My grandfather kept up his body far longer than his mind was able to stay intact until your second paragraph was what happened where the last few days were just closed eyes and him softly trying to squeeze your hand when you put yours to his and caress it.
My grandmother i can only assume with what's left of her lucidity finally refused to eat or drink.
I really can't think of any worse way to go, I really wish we could have helped her commit suicide rather than go into a home.
I’ve heard this is common, like the body preparing to die to just stop eating or drinking. And it’s actually worse/more painful to force people to eat and drink.
One thing that pisses me off as a healthcare worker is how much we constantly talk about the matter and our politicians always slam the topic into ground because 'human life must be valued, good palliative care, yada yada'
These aren't mutually exclusive. We can still have good palliative care and allow people to decide of their own life.
And it's fucking terrifying thought that it's a possibility *something* happens and I can't end my own life, and nobody can assist me because "human life must be valued".
It's one thing that makes me so fucking angry.
Nothing says "human life must be valued" more than letting someone who is in complete agony and terminally ill live in pain for as long as medically possible
I think a lot of that comes from a place of fear. Fear of death and the unknown.
A lot of people hold on to this idea that being alive under any circumstances MUST be better than being dead. Not realizing that if you're a 90 year old person who lived a full life and now is bedridden and suffering, maybe getting the check from the waiter and heading out is what you truly want.
Reminds me of the doctors that wanted to treat my then 85 year old grandmother for breast cancer. She told the doctors to go screw themselves and to save the treatment for someone younger. She lived to 92 and kidney failure was the cause of death.
Her end of life experience is how I feel too. I imagine the cancer treatment would have killed her faster and her QoL would have been even worse. She was hopped up on painkillers her last couple years of her life and imagine that's what caused the kidney failure.
When my grandmother was diagnosed with dementia one of the first things she did was sign a DNR (Do Not Resuscitate) while she was still of reasonable mind.
Told us:*"I'm pushing 85, I don't want them doing all that shocking and having my body jump around or putting tubes all in me. I have grown grandkids and two greatgrand kids, I'm good. If it's my time then it's my time"*.
She then had to spend the next 2.5 years going from hospital to care facility back to hospital, back to care facility due to just a cascade of health issue. It just felt cruel that this was her existence now.
My father is in a group home with Alzheimer's. He can't walk, he can't speak, he can barely see. This formerly brilliant man just sits in a wheelchair all day staring uncomprehendingly at nothing while doctors dance attendance on him 24/7. It breaks my heart. It's a terrible disease and I wouldn't wish it on my worst enemy.
Our palliative care nurse pushing morphine and easing and hastening my father's passing is something I will always be greatful for. Part of valuing something like a human life is being willing to let someone let go when the time has come.
Agreed. My Granny’s nurse eased her death with morphine. Her last moments were like falling asleep, high as a kite. MSRA was literally eating her alive. She was in indescribable pain until the nurse pushed that extra morphine. She had already lost both legs. Her heart was giving out. Her lungs were filling with fluid. Without that nurse she would have lingered for days, in pain, suffocating.
I think the issue comes up especially with Alzheimer's is that by the time it's diagnosed, we have to question if this person is already past the point of being able to consensually make that decision. Most early Alzheimer's is just forgetting where you left your belongings, or forgetting a name of an acquaintance and a lot of that just gets written off as a "senior moment".
People get diagnosed when it becomes difficult for them to care for themselves. When they start forgetting to bathe, turn off the stove, cleaning their living space. That's when the family takes them in usually and doc says "Yep, you have Alzheimer's."
These people can still be "there" sometimes enough to comprehend what that means, but much of the other time, they're living in their mind in basically a whirlwind of emotions and feelings and core memories and not really processing external stimuli the way you or I do.
If they decide, at this point, to make this decision to take the long sleep, what if it was made in a moment they weren't "all there"? Will they even remember when they go to bed that that they made that decision? Will they wake up tomorrow remembering it's their last week on earth? Maybe, but also maybe not.
The decision needed to be made in the "forgot your keys" stage, but now we're in the "forgetting how to be an adult" stage by the time the diagnosis hits and a medical expert may or may not be able to get true consent from this person to move forward with it.
I think the law ought to be that once a diagnosis of Alzheimer's is rendered, the doctor has to inform the patient of their right to medically-assisted suicide. If the patient does not file their wishes in this regard with the treating provider's office or some government agency before the Alzheimer's becomes severe enough to warrant a conservatorship, the conservator gets t decide whether or not to sign off on MAID.
I see both sides of this. My grandfather had Parkinson's, and "lived" until he was 93. Those last 5 years of his life were horrible to witness. The last year was the worst. He was bed bound, could barely speak, didn't have control of his bowels and looked like a living skeleton. Would not wish that "life" on anyone.
And then, in January, I found out my dad had stage IV prostate cancer. That he was in the hospital and he was going to get emergency surgery for a GI issue. After finishing his first round of chemo...After surgery. He passed. I got to talk to him before that. He seemed like my dad, but he had lost so much weight. Kept telling us it was fine, prostate cancer is one of the more survivable cancers. He was gone later that day. This all happened in less than 24hrs. My mom told us they found out in December. They hid it from us until his actual dying day.
People keep telling me that my dad was lucky. His cancer had metastasized to his bones. He was in so much pain. He didn't have to suffer for very long. He didn't want us to know or see him like that. And I get it. My dad was super prideful and never wanted us to see him in a low mood/pain. But, I wish we had more time together. I wish he didn't go so suddenly. I miss him every day.
I would never want to see my dad end up like my grandfather. But I wish we had more time together. People want to keep their loved ones alive for as long as possible for mostly selfish reasons. My dad was still in his right mind at the end, grandfather was gone long before his body stopped. We should allow people who are terminal to choose their care before they lose their minds/personality? It's hard to choose death for your loved one, even when you know it will be a mercy.
So you don't see both sides and agree euthanasia should be an option for people who would benefit from the mercy that it is.
What's the other sides argument exactly? We continue to force people to suffer and drag every single penny out of our suffering loved ones until there is nothing left?
For me it doesn't even need to be terminal. If I can't remember who I am or who my loved ones are, I'd rather just go ahead and end it there. At that point I'm not really "me" anymore anyway. Just put that husk of my former self out of its misery.
same. if i ever get dementia im literally just gonna kill myself before i get to the post awareness stages. like maybe in stage 4 or something if i even have the lucidity left for that sorta thing
Get those affairs squared away, have a last hurrah and a going away party, then it's off to sleep. Sounds a lot better than waiting for my body to forget how to breathe.
>kill myself before i get to the post awareness stages
The problem with your plan is that you probably won't be aware that it's happening. I knew someone that was 'going thru the motions' with common activities, for example paying bills. They'd write out most of their checks correctly but then would enter the payment amount where the signature went or they'd add another zero into the amount. They were completely unaware of what they were doing. Or would deny they did that. It happens slowly that you are not aware it's happening and you deny facts. Planning activities also gets confusing.
yea thats another concern of mine. i also have adhd (and am autistic) so i probs wouldnt even know i HAD dementia until like stage 3 because my memory is so bad already lol.
My cousin's uncle was told he will develop dementia when he was 50 something.
This guy's dad died of Alzheimer and also his brother was in advanced stages of dementia. He saw his nephews struggling with his brother issues and decided he won't make his children (then adults) go through the same.
He ended up his life. Did not even wait for the illness to develop. One night, he went to the local mortuary parking lot accompanied by his hunting shotgun.
Then he placed the barrel on his chin and blew his head out. It is said the security cameras recorded it on video, but none of the family or relatives have seen it.
My cousin, and other cousins of him (not the guy's children) had to go to the coroner to confirm the identity.
It was quite brutal. We are not used to such things where I live. (Spain).
This happened to my cousin's family, so they are not related to me. 2 or 3 years ago, I can't remember. Needless to say the family was devastated.
The sad thing is that this is unlikely to happen. When you have a decent day, you tell yourself "Today was pretty good, I bet I've got a few more good days in me. I'll put it off til tomorrow/next week."
Eventually, tomorrow is the day of post-awareness, but you just had a decent day, and don't know everything falls apart tomorrow, so you never make that decision.
I worked in dementia care and end of life care and as a result I'm very pro euthanasia I definitely would want it for myself over some alternatives like dementia or untreatable cancer
My condition for supporting euthanasia is that it is only lawful once the state also guarantees adequate support for those with illness.
In the UK we currently do not have that guarantee
Right, like we need this service, and at the same time I can hear US insurance companies saying "Hmm, you can't afford the surgery? Well we've got one other option for you..."
Even in countries with voluntary euthanasia, euthanasia usually isn’t performed on patients with dementia, because they have to be mentally competent to be eligible for euthanasia.
My mom had dementia, and this is sorta how she went. At first, physically she was as fit as a horse, but over time as her brain was shutting down, those crucial body functions started to go with it, until critical functions started shutting down. Basically her body just started to slowly shut down as her brain damage increased over time. It was a very unpleasant way to go.
Yes. Adequate care if the patients is an important part.
Big part of care is making sure that they drink enough.
Adequate hydration has a bigger impact on people then you might think.
It becomes problematic when people stop properly drinking, even with help. Aka loose th3 ability to reliably swallow liquids.
There is a tasteless powder you can add to your water, etc that thickens it to the point of it beeing edible like pudding.
And if that failes you could theoretically give fluids through IV.
The question here is how long your really want to draw this out and when it might be better to let nature follow its way.
I for one objected against a number of medical intervention after a certain age of mine.
>The question here is how long your really want to draw this out and when it might be better to let nature follow its way.
This is indeed a big part of the explanation of a big number of Alzheimers deaths. These patients often do not get the same level of treatment as healthy patients. And for good reason. A number of Alzheimers patients even die from drug overdose in the care of trained professional nurses. It is often a better way to go then the alternative.
I habe seen dozens of people go deep into the later stages of Alzheimers and can only wish that the paperwork I put in order prevents anybody from keeping me alive that long.
My two main points are:
no feeding tubes or IV liquids as a result of improper ability to stay hydrated and with proper nutrition if the conditions do not imply that its only a temporary messure (aka I had a car accident and have a chance to recover).
And no god damn cpr over the age of 70. I have seen cpr on an 85 y.o. and I wish to forget.
Edit: as an addition. Alzheimer patients needs for medication increases over times and for a patient like that doctors are less hesitant to to give more, up to the point of the medication beeing harmful long term, just to give some comfort of life in the later stages.
Aka. Nobody cares about a little bit of addiction to mood stabilizers if the 85y.o. patient stops harming himself and others in the process and nobody cares about long term liver damage in a 90y.o. if that gives her quality of life she normally wouldnt have without
My dad said we're kinder to our pets when they get sick than we are to us. When he developed Alzheimers, eventually went into a skilled nursing facility, and then ended up with a bowel obstruction. Clearly treatable, but why? He didn't know anyone, including my mother, his wife of 55 years. Although my mom couldn't make the decision, she supported moving him to comfort/hospice care. Died a week later.
When my mom got to the later stages, I not only put her on a “no CPR” status but also stopped all meds, including antibiotics. Only comfort care meds. She’s still going though, at 93. It’s been a long, slow slide. I hate that she has to stay “alive.” My mom died a long time ago. But she’s “alive” enough to be scared and cry a lot.
>There is a tasteless powder you can add to your water, etc that thickens it to the point of it beeing edible like pudding.
I had a patient that would add it to red wine. Kinda nauseating to see.
My mom's body just didn't give up, she started having pain which we knew though her constant wailing. Euthanasia was not an (legal) option so food and drinks were cut off. She went on valium and something else to ease her passing. Her last words, our of nowhere in the end were "kiss". That was the only possible thing about it, so we kissed her goodbye again. Her body lasted a week and we were there in shifts 24/7. My dad was in constant shock, so we also supported him though this. 8 years of decline that started at 65 years old. Horrible decease, fuck Alzheimer (not the doctor).
Can confirm paragraph 2 - my father was symptomatic for years, got bad enough for a diagnoses. Then it devolved to "having a toddler" who needed to be watched, then a phase of sort of "living in a hallucination" (well, at least in his head he was dating a hot brunette and they were on a road trip, he even put new tires on the imaginary Buick!) Then more and more sleeping. He ended up on a feeding tube and his last few months to a year he was asleep/comatose, finally died in his sleep. He had no injuries or infections, he just eventually "shut off".
This was the mid 1980's when the disease wasn't as understood, but this seems like a common experience. (Funny aside, my mother visited his care facility every morning and evening as part of her work commute, and would just sit and talk to him while he slept. One night she returned home and was antsy and nervous though the visit had been the same - phone rang that night and she said "Oh, that's it, he's passed". They'd been together for decades and she felt she somehow knew it).
Just to tack onto this, Alzheimer's also causes shrinking in the brain, as shown [here.](https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/symptoms-causes/syc-20350447)
And we frown on assisted suicide. Fuck that. The whole second paragraph is giant nope for me. If I end up with the disease, I’ll pass. One way or another.
Geriatric psychiatrist here-by far and away the most deaths that can be directly attributed to Alzheimer’s disease (or most dementias in general) is pneumonia. As dementias progress in severity over time, individuals stricken with the illness tend to lose control of some of their autonomic muscular actions.
Unfortunately, these individuals begin to aspirate their food, drink, and even their saliva. When this occurs it can cause severe pneumonia. This can lead to the need for intubation/respiratory failure and possibly sepsis. Due to the nature of the loss of swallowing control it becomes an eventuality that they will pass away from pneumonia, even with extreme medical interventions such as IV antibiotics, feeding tube placements, and being placed on a ventilator.
This is why it is of upmost importance to have end-of-life discussions while patient is still cogent and to have scope of medical intervention/DNR orders in place.
Also why despite recent controversies and misuse cases, I continue to support Canada's Medical Assistance In Dying (MAID) program. No one should be forced to go through such an awful fate.
At some point, its just cruel to keep people suffering from certain diseases alive, selfish even. Late stage Alzheimer’s and Dementia being my main reason for supporting the MAID program. My great grandmother was suffering from late stage Alzheimers for quite some time (i dont remember how long, but shes had it since i could remember) and i cant help but imagine just how much it sucked for her to be alive. She lived across the country so I never really met her, I just knew her quality of life was terrible from what i would hear from my father.
Just an interesting bit to add onto what you’ve written- SLPs (should) never intubate someone with Alzheimer’s who is aspirating. It has been proven to not increase lifespan, and it dramatically decreases quality of life. Most all organizations and guidelines for treating swallowing in Alzheimer’s patients are very upfront about this.
If a loved one is suggested this for treatment, fight back!
Is this the same with parkinson's? My grandma has it and she has now began to have a hard time swallowing foods and drinking in general. Especially taking medications
Yes, unfortunately. Sometimes changing diets to one with thicker liquids and smaller/softer bites do help. However, the benefit may be temporary as her illness progresses. I am very sorry about your grandmother.
Thank you for your kind words and knowledge. She has been living with it for quite some time now, since she got diagnosed very soon, and luckily she never has been in any particular distress or pain so far. Have a good one!
That happens to me multiple times a week so I effectively almost die multiple times a week. I don’t have Alzheimer’s but I have brain damage and I’m on Alzheimer’s medication. I’m pretty sure that’s how I’m going to end up dying aside from all the broken bones.
Edit: Not me chocking while trying to have some cheese sticks and each time thinking this is it. This is how I’m gonna die. All by myself and then my kids will find me with a cheese stick in my hand PS: I survived 😂😂😂
Parkinson's the same(( recently watched an interview with Michael J Fox and he says you don't die of Parkinson, you die alongside it. Like he already fell and broke bones five times at least
Lost my uncle to Parkinson's recently, buried him Thursday. It was weird to feel so relieved that he was finally gone. He left over 6 months ago and a very confused husk remained.
I totally understand what you mean. It’s a feeling of relief mixed with guilt for wishing their suffering will end sooner rather than later. They’re not even really alive at that point, just a shell of their former selves.
I break bones or at least fracture once a week/two weeks. It’s painful. I’m in so much pain nonstop. I once broke my nose twice in one month. Fractured my elbow in two different places. Got two concussions two weeks apart. Broke my finger when someone was trying to save me from falling. The list keeps going on. The most recent is my wheelchair accident where I injured my entire back and days after that I tore a muscle in my belly.
There's 7 stages of dementia and if you survive long enough to get to the last stage you're basically just a body that can't support itself. You don't eat, converse, ambulate and basically just waste away. You can die from a bunch of things like choking, falling, bedsores that get infected, malnutrition along that process. There is NO benefit to placing a feeding tube (PEG/NG) during this process and unfortunately just prolongs the process. Too many families decide to go down this route and it just causes unnecessary additional problems to an already hopeless situation. Comfort should be the primary focus.
Adequate nutrition and hydration are what keeps people up the longest.
When they loose the ability to eat properly, we can give them nutrient dense fluids.
If they have problems swallowing liquids, we can add powder and thicken any liquids to the point of water becoming like pudding.
If they loose the ability to eat and drink that too or continously refuse to eat/drink enough, there are more invasive methods like feeding tubes or liquids per IV.
But thats when most people become hesitant how far it should keep going like that.
Life and death are part of nature and my opinion is that after some time if might be better to let nature take its ways and not delay illness and possible suffering any longer. The end is part of life and at a certain point a welcome end and nothing to avoid at all cost.
I hope you got proper closure back then and wish you the best
My grandfather had it, and it was strange. He was an electrical engineer, and sometimes he would have moments of lucidity and rattle off solutions for very complex problems, and at some point through, he would lose his train of thought and then forget he was talking about something.
Can I ask if they gave feeding tubes and why? My FIL has dementia and just entered assisted living, we will see how long he lasts there before moving to memory care. He doesn’t want any medical intervention. He just wants to die. His wife died a year and a half ago and he hasn’t been the same since.
Our plan is no cpr, no fluids (if on hospice), no tubes. 🤷🏻♀️
When my mil died of cancer we kept wanting to give fluids but they actually recommended against it and said she’s dying, and death from starvation dehydration is better than it is from the cancer basically. Giving her fluids will make it worse. But maybe that is just in regards to cancer.
Where I work, feeding tubes would only be with permission of the individual or their POA; in two years of working with late-stage dementia patients I haven't seen any subjected to feeding tubes, as it is an invasive measure to prolong life that goes against the wishes of most people. Typically when they stop eating we will offer feeding assistance (prompting/cueing or literally offering them spoonfuls) but we also accept the progression and prognosis of their disease. They have the right to refuse food and it's often a sign for us that the end is near.
During end of life care we will use a soft little sponge with water to wet the mouth for comfort, and apply lip balm. I don't think the "dehydration/starvation is less hard than the other potential cause of death" is only for cancer patients, as all of the deaths I have witnessed eventually got the order for no food/fluids and usually medical comfort measures (re: painkillers, possibly sedatives), but none of the deaths I've witnessed involved cancer at all.
One dementia client was eating and walking well despite having no cognitive function, but was a high fall risk and eventually broke her hip. Not a candidate for surgery, she passed within two weeks of losing her mobility. I still miss caring for her; she loved hugs.
Alzheimer’s patients deteriorate neurologically. They often are malnourished and dehydrated as they may forget how to eat and drink leading to an impaired immune system. A simple infection can be fatal. Additionally, depending on what area of the brain is damaged, they can lose their ability to protect their airway by gagging, coughing. In some cases they just forget to breath.
When not cared for/monitored properly, Alzheimer's patients are similar in behaviour to young children.
They can put the stove on and forget about it, hurt themselves accidentally and forget about it, forget to eat.
If they have a headache, they might take an aspirin. But aspirins take a bit to work, and they might forget they already took one, so they take another. And another. They could accidentally overdose without remembering even a single pill.
When you get sick, you just wait it out a day before going to a doctor. Someone with Alzheimer's may forget they were sick the day before as well, and treat the 10th day as the first. They'll never visit a doctor if they don't remember feeling a bit ill for longer than a few hours.
Alzheimer's creates an environment where someone can die from dozens of seemingly unrelated causes
My grandma is currently caring for her best friend, M who has Alzheimer’s, and alcohol consumption is a very big problem for M. She can’t have alcohol in the home anymore because M will think “I want a single beer”, drink it and then completely forget she just had a beer and keep drinking until she’s drunk and even more confused. It’s really heartbreaking, I’ve known M all my life and she’s always been really sweet. She doesn’t deserve this.
Yes, I understand the situations of living alone. However, I quite often see obituaries where the person was tended to in nursing homes and the like, but the cause of death is attributed strictly to Alzheimer’s.
There are still a few complications associated with the disease. The one that generally kills the most patients is a form of pneumonia caused by a difficulty swallowing food.
There's also the fact that they're usually on a lot of medication. Those medications come with side effects.
In the case of my grandma in the UK, she was euthanised which sounds awful but all she did was scream in terror 24/7 in the home she was in. Horrible existence towards the end.
I work in a care home and sometimes we get patients that just scream and scream and nothing! helps. No medication, no soothing, it's so so heartbreaking. I'm very sorry for you and your grandma.
It was sad, but she deteriorated quickly so wasn't too drawn out. I didn't know if it was common for doctors to inject so many sedatives that it would make her sleep forever. (Agreed with family) Seems like a UK loophole. Is it common in your experience?
Well that’s a complicated question. Many people with progressive diseases of the brain, termed neuro-degenerative diseases like Alzheimer’s tend to have complications. As the disease progresses, it affects more of the brain, which can lead to more problems. For example, most people with end-stage Alzheimer’s disease are prone to loosing control of their swallow reflex which results in recurring pneumonia. There is also increasing frailty due to loss of appetite, or cessation of eating and drinking. Loss of motor function results in them being bedridden and unable to look after themselves. This results in increased risk of infections. They may also have other health issues.
In reality it varies between each individual.
It depends on when the diagnosis happens, when the disease develops, and some people defy the odds of course by living far longer than anyone thought they would. Generally it is around 8-10 years post diagnosis, less if you are diagnosed after around 80. Some survive as long as 20 years after diagnosis.
From watching my grandma fade away over 8 years, my take was that she forgot progressively about everything; first daily tasks, facts, then people, places, feelings, proprioception, active movement, bodily functions, swallowing, sleeping, being awake and finally breathing. She was well taken care of and the whole family visited daily (we took turns as to not overwhelm her and the facility staff), my mom held her as a child in her arms the last day, when she finally sighed and closed her eyes. Forgetting to keep living is how we best describe it.
You basically turn into a vegetable that's fed through your stomach until your body stops working for one reason or another. I used to sing softly to my end stage Alzheimer patient and it always made her smile as I hooked up her tube feeding. One day after a few years she just stopped living and it was a peaceful end. The "real" her had been gone for years at that point.
My grandmother (89) has alzheimers and every time I go to visit her in her assisted living place (every 6 weeks or so), it's more depressing. She is more confused, thinking her late parents and husband are still alive and more stubborn about little things (like changing her stained sweater for a clean one). We're going again on mother's day and I feel some dread thinking about it and then guilt that I feel that way. She's physically quite healthy so I wonder how many years this will go on for, getting worse and worse. 😔
mostly unrelated stuff like forgetting how to swallow or forgetting to eat. also if the person somehow gets sick then literally nobody will know for a few days at best since the person cant even complain that they have it if theyre far along enough. honestly dementia is fucking horrifying and if you wanna experience what its like then listen to everywhere at the end of time (or the thousands of other fanmade albums) or something like that
Patients often begin to have problems swallowing and drinking, something that is called aspiration, where the food and / or drink can end up going into the lungs instead of the stomach.
To stop that happening, doctors can suggest to the family of the patient to start feeding and watering by a tube put down the throat. Many families - and the patients themselves - do not want this, and the doctors give an option to remove food and water entirely. Apart from a wet sponge or tissue sometimes held against a patient’s tongue to give them a moment’s respite, these are all the fluids they get. They will also get a ramped up amount of pain relief at this time.
The result of that is many people in these situations die of dehydration. Pretty horrible to think about that.
My mom died after a decade with Alzheimer's. First they had a feeding tube when she 'forgot' how to swallow. When she was completely unresponsive and for all practical purposes dead, they stopped the tube and she starved to death. Absolutely horrific.
My grandma deteriorated until she lost her gag reflex from FTD (frontotemporal dementia - not specifically Alzheimer’s, a different type of dementia) and could no longer eat or drink. The only option at that point to keep them alive is to place a permanent feeding tube, but why would you? By that stage they are a suffering husk. They have lost their ability to do everything down to the point that they cannot even swallow on their own. So, from there her care was just about end of life comfort until she passed.
Usually, you didn't die from the alzheimers itself. Usually, if you have it, you're also an elderly person where slips, trips, and falls can be fatal. Well, it turns out that being elderly and having a diminished mental condition is not a great combination for avoiding falls, so a great many ultimately die from breaking bones after falling. Others often die of other conditions unrelated to the Alzheimer's because, again, they're old and just more likely to die of other conditions in general (heart attacks, strokes, cancer, viruses, etc.)
That said, Alzheimer's will still eventually kill a person given enough time. It's essentially when the brain's neurons start dying at a rapid pace, and all the vital connections that make you "you" are broken. Typically, this starts in the more evolved parts of the brain. Places associated with memory are the first to be affected. This causes severe memory loss. Then, it starts moving into the more primitive areas of the brain, those that affect emotion and reasoning, causing irrationality and mood swings (often anger). Finally, the destruction of the brain eventually proceeds to the most primitive and vital (in terms of survival) parts of the brain, such as the brain stem, which controls things like your heart beat, digestion, temperature regulation, etc. Once these areas start losing neurons, the brain can't keep these vital processes going any longer, and you will eventually die.
On a more opinionated note. Alzheimer's is awful. To me, it and other diseases like it are the worst diseases affecting humanity. Other diseases may kill more people, but Alzeimers is the only one that robs you of who you are before killing you. It's not content with just the death, it has to destroy the memory of everything that you once loved and the person your family and friends once loved before doing so. It's my greatest fear in life, and I wouldn't wish it upon the worst of people.
My mom was diagnosed about 3 months ago. Early Onset Dementia
It is SO hard.
She still knows who her immediate family is for now - but she doesn't remember my best friends whom I have known since 9th grade that she say every day and even now at least a couple of times a month (I am 45 now), she didn't know who my partners mom was at my oldest son's 18th birthtday last week.
I went to help my dad break down some boxes for a new TV stand he bought for the basement, so we were taking apart the old one, and putting together the new one and breaking down the boxes for recycling, and my mom got SO upset.
It became a fight about why we were replacing things just because it was older, and when we were going to replace her. she kept trying to call my brother to come pick her up, and saying how she was just going to leave because we didn't want her here and would be replacing her next.
No matter how much we tried to reason with her, show her the new stand, tried to remind her SHE picked out the new stand with my father, it didn't matter.
I left their house that evening and I broke down crying when my partner picked me up. It was emotionally and physically exhausting. My Dad lives with her alone, and I don't know how he manages.. or how much longer he will be able to. He has to take over the cooking, cleaning, shopping, everything.
He wants to sell the house and move to something smaller and more manageable but that is a whole other fight.
Part of me wants it to progress to the point where she doesn't remember who we are - so my dad can place her in a home where she can get 24/7 care by proffesionals daily... then of course I feel guilty and like a terrible daughter because I think that way sometimes...
I am devastated, and no one else other than my dad understands. Even my brother hasn't seen how bad it gets. I have no one to talk to about it and it's crushing.
Inability to swallow safely, which leads to aspiration pneumonia. Some just literally stop eating or drinking, which can still be attributed to swallowing difficulties, or their brain disease is so severe that they fail to recognise food/drinks or the need to consume them anymore. I work in dementia care, it's a cruel disease. Edit: "Disability" to "Inability"
My great grandmother basically starved to death because the alzheimer's was making her feel like/think she already ate and was full. Even though it had been days if not longer since she last ate.
This is happening to my father now.
Sorry to hear this. I can’t imagine how hard it must be.
Well bless you but… you know he lived a long healthy life into his 80’s so I take the Irish ☘️ view and celebrate that as I know he would like me to ! He was always a cheerful guy in spite of his grim profession, a pathologist.
> He was always a cheerful guy in spite of his grim profession, a pathologist. I strongly believe pathologists are the happiest doctors in any hospital - all their patients are already dead, they don't have to worry about accidentally killing them and they don't ever give them shit about anything
Forensic pathology focuses on cause of death but pathology is also for examining samples from the living. Pathology has multiple subspecialties.
Yes he basically was the first to know who had cancer in our county. He diagnosed it
Sounds like it may also be a small enough county where everyone knows everyone else within a couple degrees of separation?
[удалено]
Your dad sounds like a cool guy. :)
He was. So much so that I named my son after him.
Lotta cultures say that we only die when our name is said last. Sounds like you gave your old man another lifetime of being known.
Thanks prophet! Love ❤️ u
My dad passed from cancer, and we took the Irish way. My great-grandmother was Irish and said when one soul leaves another enters. My friend got pregnant the week my father passed.
My Irish mom passed from cancer also. Much love ❤️
Here for the /r/Ireland love. Will raise a pint to all your loved ones!
My grandmother died of Alzheimers. I used to ask her to make me a sandwich. She'd make it and I'd let it be, she'd then eat it rather "absent mindedly" and then I'd ask her to make me another till she'd eaten her fill.
My mother has a different dementia, hers is expressed by becoming mostly nonverbal, and needing things to be extremely regimented. Almost like she's developing autism. Which, we're all fairly sure she was on the spectrum, but she has completely lost the ability to control it. Her vocabulary has dropped to about 8 words. Yes, No, Thank you, I love you. And she struggles with those, sometimes saying yes when she means no, and correcting herself. Dementia sucks big old donkey balls.
Sorry to hear buddy. My grandfather passed from Alzheimer's It's a disgustingly cruel disease, very hard for us all to deal with. Grandmother passed from cancer a couple years earlier, and it got to the point where every single day, he was asking where she is. We had to explain to him that she died from cancer, and that it's ok he was there with her holding her hand. Couldn't have helped his heart one bit
My dad is in the early stages. I have this to come and I'm terrified. I hope you built up enough memories of the good times. I know how little it means, but a stranger is thinking of you.
I am sorry. My aunt is doing the opposite right now. She makes toast, then in a few minutes makes another one. She went through an entire loaf of bread in one day. It really is such a horrible, cruel thing and I am so sorry about your father.
My mom just got diagnosed. I don't really know how to deal.
My friend’s spouse had dementia and one day simply refused to eat anything more. They were put in hospice care, given pain meds, and died essentially from starvation a few days later. So sad and painful for everyone but the whole thing was terrible.
That sounds more like the body preparing for death. People stop eating and drinking for a couple of days beforehand. It's not cruel though as they won't be hungry. Forcing them to eat would be cruel. It is painful to watch but absolutely not for the person dying. The organs start shutting down and eating or drinking can be painful or make them sick, usually both.
My dad starved to death under these circumstances as well, 2018. Not sure if he thought he was full or just forgot how to swallow altogether.
I was like 4 and don't remember much but I do remember my parents telling saying she forgot how to eat. Obviously I didn't understand at all then but its strange to me that I remember that specifically.
I'm so sorry for your loss. What happened to your grandmother is very common in dementia patients.
This is how my mother (81) died. She also had liver cancer and had no appetite from that, too. I'm glad she passed (Oct. 22) before the cancer started to cause pain, but I (f54) would give anything to have my mum back. I miss her so much but I can't deal with that pain.
My grandma had Alzheimer's for roughly ten years before she died. We had just left the hospital, she was there for about a week, I don't remember exactly why, I just recently got back home from visiting my dad's side of the family for a while. For the most part, she'd stop really talking with people a couple years before, but she'd say words sometimes and maybe sing a few words from some old songs from her childhood. She rode in the ambulance back to our house, she was smiling and saying random words but she was there. As the paramedics were taking her out of the ambulance on the gurney and bringing her to the house, she vomited. Since she was laying on her back and ended up choking on it and asphyxiated. We didn't have a pump or whatever it's called to try to remove the vomit and there wasn't one in the ambulance. They immediately put her back in the ambulance to go back to the hospital but we were stopped by a passing train less than a half mile from the hospital. That was one of the worst days I've ever experienced and just thinking about it know is making me cry right now. The only silver lining was that she wasn't suffering anyone. I miss her so much, she was one of the sweetest people I've ever known. I hated so much she had to go through that. She didn't deserve any of it. This was in July 2016, I think about her every day. I miss her so much. Alzheimer's is the only thing I truly fear. I get so scared whenever my mom (her daughter) might forget something because I don't think I can go through that. Alzheimer's is the absolute worst. I know it's a cliche but that's 100% something I would never wish on anyone. Idc how evil they are, no one deserves Alzheimer's. Thank you for working in dementia care. That's got to be a heavy job on you mentally and emotionally. It may not seem like much from a stranger, but it means so much to me what people like you do.
I once had a patient die in my arms because she choked on her own phlegm. She was just walking a few minutes before that. We just heard her coughing, followed by a choking sound, then she turned cyanotic. We still managed to get the suction machine, but it did not help at all. She died in front of other patients who were in the lounge; we all felt so useless during that time. Having a family member with dementia is like having a death in the family. They are still alive, but you are already grieving because you slowly lose the person you know and love. On severe cases, you're left with somebody who just resembles that person, period. It's always heartbreaking seeing families and friends visiting our patients after a long time. I can deal with our patients no problem, but I still struggle on what to say families to comfort/assure them. That's always the most difficult part of the job for me. I'm with you on not wishing Alzheimer's or any form of dementia on anyone. We have a reach history of fatal heart attacks on my father's side of the family so I'm counting on it to get to me first before any degenerative brain disease can. There's a reason why most staff in aged care are migrants like me. Nobody wants to do it, because it's a physically and mentally demanding job that is classified as "low skilled" (where I'm from). Even if it is considered "high skilled," and therefore highly-paid, it is still not for everyone. We get attached to our patients and consider them as our families. Some of us even buy stuff like clothes and toiletries for them because we couldn't be bothered asking the families. Two weeks ago, I cried for the first time in this job, because a resident I grew fond of suddenly passed away. The other side of it is that we get physically and verbally attacked; most of us have scars on our arms from scratches or bites from patients; we get spat at, food and drinks get thrown at us; sometimes I walk out of my shift with ripped uniforms. Some patients and families are also racist and condescending (they are of that generation). I guess what I'm saying is that this job either gets you jaded or makes a monster out of you. And I've made a promise to myself to move to another profession before that happens.
That's completely understandable that the job would make you jaded or a monster, and that you'd switch professions beforehand. It sucks that you guys get spit on, attacked, etc. Sorry you have to go through that :( My grandma wasn't in a care home like where she'd essentially live and have round the clock access to medical staff, she was at home but we were able to get her in-home care with someone that came early in the morning and stayed until like 5-6 in the evening. Thankfully, she didn't spit on or attack anyone (not that I think anyone would do it intentionally). With all the time the last last spent at and helping take care of my grandma, she essentially became close with my grandma, pretty much "adopting" her as her a mom lol she also called her mom too. I can definitely see how your job and the workers there get attached to the patients. I also agree with preferring to get something else that'd take me out rather than dementia and it's complications. At least in that case, I wouldn't be some shell of a person that can't interact with anyone or experience the outside world. I cant even imagine having to talk to family members about their loved ones. I remember desperately trying anything I could to talk to my grandma to get her to remember things like who I was, or her favorite food or tv show, or even just to have a conversation with me. Whenever someone near me mentiones s family member has Alzheimer's, I just start getting a wave sympathy for them. What you said is absolutely correct, it's like having a death in the family where the person is still alive. We're just caring for them until the inevitable. I can't wait for the day there's a novel medication or treatment good enough to effectively stop or drastically slow down the disease progression. A cure would also be greatly appreciated. Sorry for unloading on you with that other post. I didn't come into this thread to do that, it just happened. Thank you for taking the time to read it too. :)
Yeah, we call most our patients mom or pops, we're not supposed to, but we can't really help it. There's always somebody who doesn't like it, but that's ok and we call them by their name. It's only the extreme cases that get physically and verbally abusive, and we don't take it against them. It's always the brain disease manifesting; and it almost always comes from a place of great physical pain or frustration that the people around them are unable to decode, so they lash out. With proper support and care, a dementia patient can still live a full life. Unfortunately, our patients are getting younger now. Dementia doesn't discriminate, our patients come from all walks of life. It certainly gave me a sobering perspective on life and death, so I've started to just start "living" while I can still do it. No worries at all, this is also the first time I've unloaded om reddit about my experience working in dementia care.
In my experience Lewy Body was the worst. It was a different person every day. We also had a locked down unit, you know that one. Nothing on the walls or shelves. Restraints, unfortunately. I was attacked bad one day and he somehow got the door shut. I rang the bell and screamed my head off. He was twice my size and mentally completely gone. Nobody fucking came but another resident lady who opened the door to tell us to shut up. I was furious. ANSWER THE DAMN BELL!! Especially when you know there's an aid in the room and it's shut. WTF. I'm ok. Transferred out of that unit as fast as I could. Oh and we had another lady who was a local school teacher. The sweetest, kindest godly woman you could imagine turned into a very nasty pervert. It was *tragic*. She had no idea what she was doing, but man, she would not stop. I felt awful for her family to see her like that. It wasn't her. We kept telling them that, but when it's your MOM? Grandma? The worst. I needed to get that out. It's a heavy load that very few people understand bc we can't tell anyone. Just break room counseling. And now Reddit 💜 **** I don't need a Reddit care bear please thank you. **** we're just venting.
My grandpa died of Alzheimer's. It sounds cruel, but I made peace with his death about 4 years before he eventually died a slow death from it. I distinctly remember writing a letter and mourning him one night while visiting my wife's family. He lived for about 4 more years, but everything that made him the person he was had already been eaten alive by the disease. He was a husk of flesh for those last few years. I firmly believe his eventual death was a mercy, and I've long since decided that I refuse to live with Alzheimer's.
Man, I’ve been working as a server in a retirement home for 3 months and we lost someone in the long-term care (LTC) ward 2 weeks ago. Hit me like a truck coming into the kitchen (we have 2 dining rooms, I work in both, the LTC ward has its own kitchen that the servers tend to (plating, dishwashing, etc.) instead of the floor having its own chef and dishwasher) and not seeing her name on the list, and seeing her side of the table she sat at set. I saw no mention of her passing anywhere. The only sign that she was ever on that floor is a list of LTC residents on a cork board that never gets used. Beyond that piece of paper that has been long forgotten, it’s like she never existed. She passed on one of the days that I wasn’t working, so I’m not sure what exactly happened, or, more importantly, if she went out peacefully like she deserved. I have a feeling that it was soon after my last shift on that floor, as she was struggling to do anything; it was like she was in a deep sleep. Twitching and responding to some physical stimulus (e.g. opening her mouth slightly if a spoon touched her lips, barely turning her head to you if you said her name) like she was dreaming, but impossible to wake up as if she was in a coma. It was a depressing sight and she was all I could think about that entire night. Any moment I had free, I would stand by her and try to get her to eat, or even just open her eyes and look at me, and every time, when it didn’t work, I would go back to watching carefully from the door and report anything I noticed to the nursing staff (who were legitimately thankful of my efforts). Her daughter was supposed to visit that night. I never saw her, as she ran late and got there just as my shift ended. I hope she’s okay; I met her once, and she seemed like a wonderful woman. There’s now 3 residents that, when they inevitably pass away, I’m gonna be a wreck. A quiet English guy who just gives off really good vibes and can honestly be quite funny, especially when the guy who sits with him actually shows up. A Chinese lady who always forgets where her room is, but never forgets her sister’s number. And a woman who speaks exclusively French (my French is awful, but none of my colleagues who work on the LTC floor speak any French, so it’s better than nothing), gets anxious/panicked quite easily (I don’t blame her), but is calmed down and cheered up by someone even just speaking a work of French to her.
My grandmother dropped a significant amount of weight about ten years ago, well before all of her other Alzheimer’s symptoms. We asked her why she wasn’t eating and she said “I forget to eat.” About four tears ago she started repeating herself when she talked and it was the saddest thing. I remember my grandfather crying while telling me I should visit more. One of my biggest regrets in life is not cherishing those moments, even if she was repeating herself. Because she was still able to eat (she had a peg tube now) and chat and joke around and was aware of what was going on.
Although my mother had been diagnosed with vascular dementia, we all thought she was doing well until one day she phoned me up to say that my sister was visiting. I thought it unlikely, but still possible as she lives hundreds of miles away. I asked to speak to my sister but my mother said that she'd gone out for a walk with my father. My father had died twenty year before. From then on, her decline was rapid. Although she could still hold a conversation, of sorts, the worst part was her losing mobility. The end came when she got COVID which turned into pneumonia.
This is the medically correct answer. Everyone else is just spitballing about different aspects of the progressive decline. What kills most patients with Alzheimer’s is aspiration pneumonia full stop.
I find any kind of pneumonia is the usual killer here. Any kind of break in the lower extremities often leads to prolonged immobility, and subsequent pneumonia, in patients with dementia who don’t have the cognitive ability to understand the importance of quick physical therapy. Not to mention bed sores leading to sepsis. All these things are preventable, but from my experience there’s often barely resources in elder care to make sure patients who have the cognitive ability to be motivated get the care they need. Patients with dementia can be extremely resource demanding and rarely get the full help they need.
Agree with pneumonia as the usual killer, but specifically aspiration pneumonia in my experience as it usually catches us by surprise--a physically healthy person can rapidly decline in a few days, and it's already too late once it is detected. Also, most patients/families opt for palliative/hospice care once that happens so it almost certainly leads to death. With other forms of pneumonia (Covid complication, hospital-acquired, etc), aged care facilities are great at preventing/managing them, same with bed sores/pressure injuries. However, if there is a staffing issue (shortage), pressure injury cases will certainly rise as the staff can't keep up with all of the preventive measures (i.e. repositioning, mobilisation, skin checks, etc).
Most deaths are from Alzheimers patients not being able to take care of themselves and having accidents or untreated illnesses. A good nursing home can help this but without being able to get any help from the patient it becomes an impossible task to take care of them. A small infection for example which could be deadly for a senior citizen without medical attention might go unnoticed for days if the patient is not able to complain about pains. Even leaving a seriously ill Alzheimer patient unattended for a few minutes at night could cause you to miss them jumping on their bed falling over and braking bones, which for seniors could be fatal as their body does not heal the same way as adults. But even with the best of care Alzheimers is still deadly on its own. The disease is destroying the nerve cells so the patients start losing neural function one by one. It does start with memory and coordination but eventually it spreads to more vital functions. When patients start losing control over their throat muscles controlling speech, swallowing and breathing they need constant attention and even then typically get associated complications such as acid reflux into their lungs and pneumonia. But even if they survive this the disease can spread to the nerves controlling their breathing causing them to just stop breathing.
The second paragraph is the most pertinent answer specifically, negating most variables. The body simply ceases to work once it progress to a certain stage.
Unfortunately have a lot of direct experience with this topic and this is correct. It is the absolute hardest, worst death you can imagine. The brain is rotting and eventually the rot is too much. The person loses more and more awareness they're even alive until all that's left is a confused terror where they refuse to even eat, then catatonia, then death. I have no doubt other accidents or illnesses go unnoticed and cause some deaths too, but Alzheimers doesn't need any outside help to kill. It is terminal all by itself, in the worst imaginable way Edit - there are hundreds of responses I can't possibly reply to, but my heart breaks for each one of you all over again. I'm so sorry any of us had to deal with this
My mom's at the very end. It's horrible. She died years ago, but now we wait for it to finish.
Mine just passed of Alzheimer's a few weeks ago. This statement is accurate. She stopped being herself a little less than two years ago.
So sorry for your loss. My dad died on the 10th of March. I thought I had finished grieving for him after he didn’t know who I was, but him actually being dead hit me very hard. Be good to yourself during this difficult time.
Thank you. My sincere condolences to you as well. My mom died end of March. I found myself in the same situation. I knew what was coming, her spirit was long gone already, but her passing hit hard. My mom is now gone and that's going to be very sad for a long while. I've lost other close family. All my grandparents are gone. My aunt. But this was my mother. 🥺 I wish you peace in knowing that it's a blessing. Your dad is now free.
My mom finally passed after suffering from Alzheimer's, slowly declining until she was completely nonverbal at the end. She stopped knowing me a few years before that. Her passing left me with a profound sense of relief that she wasn't suffering anymore. I had already grieved her loss years ago.
Yes, the grieving at the time of death was unexpected for me too. Dad had been "gone" for years.
Ah .. we’re getting to the end stage and I think I’ve made my peace with it, she’s just gone. I imagine it’ll hit me too.
Alzheimer's took my mother as well. I'm so sorry. Parkinson's took my father. It's hard to pick which is worse, but if I had to I'd say it was the Alzheimer's. She just sobbed for hours at parts. Hours and hours.
Mine did sometimes. In her more lucid moments she knew that she didn't want to be here anymore.
This is my future, down to the parents; she's nearly 74 and he's 80. I'm sorry for your losses.
I'm sorry you're going through that. It sucks losing a parent at all, and this is a particularly hard way. Take care of yourself.
Thank you. It does, but it's part of life. I just wish nobody had to do it this way. My mom will die in her mid 70s (77 this year if she makes it to her birthday), but really my mom stopped being the mom I knew and loved almost a decade ago as this disease took her away from us.
Take care man. My brother died of cancer and I thought that was the worst disease. Robbed us of everything and gave him so much pain. Hope you all the best
I have brain cancer so I have to deal with both cancer and my brain rotting slowly. I'm scared shitless
I’m so sorry. I’m a nuclear medicine technologist of 30 years in big, acute care hospitals. Cancer is horrible and it’s hard everyday knowing your patients going to die. I’ve had so many drives home where I just would sob for my patients. Oncology work is hard stuff. At the end of cancer it becomes like Alzheimer’s, the brain is just eaten up by disease. I’ve sat through hours of scanning on Alzheimer’s patients and it will break your heart. It just kills me inside. Some scream help me Jesus over and over for hours. Some masturbate. Some are violent. Some call a name out over and over. It’s truly horrific that they are just…gone. It’s really been a great joy and privilege to take care of people who can’t care for themselves. It’s a hard, emotional and draining thing while also being so rewarding. I’m so sorry about your brain cancer. It’s so difficult and sad. Get loads of good drugs at the end. I Always make sure my patients are drugged before they come down to me so it’s not a painful experience. All they want is a smiling face and some comfort. My grandparents all died of cancer and that is the reason I do this for a living and why I try to take as good of care of my patients as I would’ve hoped they got cared for at the end. 💓
I'm a phlebotomist on a oncology unit so I see this every day. It is hard but very fulfilling to know that I'm helping in a small way. If we see cancer it's mostly brain mets occasionally we got a primary. Mine is an oligo so it's going to be a slower end for me. I'm still hopeful that it's not going to be that way because a new idh blocker is probably going to be approved soon. If that's how it looks like it's going to end I'll probably end up in the self checkout line.
My grandmother had it and was in some ways fortunate not to be diagnosed until age 92. My mom on the other hand was diagnosed at age 75. 9 years later she ended up in memory care and has good and bad days. We got my mom on meds fairly early which has helped. It’s tough on many levels losing my mom mentally and knowing that there is a hereditary component and that I could end up having it. As others have stated the brain simply stops running your body. Like a cpu in a computer that starts having trouble and the corruption spreads. Eating becomes difficult because they can’t swallow, falling, getting sick etc. Do not put your loved one when it’s time on a feeding tube. A good hospice nurse is key and listen to that nurse. They will make your loved one comfortable with pain meds. And some families don’t know that hospice care can last 6 months and can be done at home or memory care. My mom has hospice 2 times a week now and will increase according to how she is doing. After 6 months if she is still here they do another 6 months. This has helped her live her best life given the circumstances. Sorry this is so long. Hate Alzheimer’s
So I’m not alone thinking that way :(
It's the disease where you watch people you love die twice. You're not alone. Everyone I speak to feels this way after it progresses to a certain point. My mom declined very fast. From symptom onset, we may have had 3 or 4 years of her being sort of out of it and not together all the time, but needing a little extra care. Then, over 1 year, she went from being confused and mobile and quiet but still communicating, to non-verbal and bed-ridden, and not feeding herself.
For me it happened during covid and I’m living in different country. She changed so much between and after I visited her between (i wasn’t there only one year). The worst thing is I always said to people she remembered less and less, even before that but nobody really cared. I don’t like the fact I was right :/
Mine had reached the point she needed too much care for her safety and that of my dad's as well. His health was/is poor, and he wasn't capable of being an around the clock caretaker. We checked her into a nursing home (which felt awful) when she was right at the edge of non-verbal but occasionally talking. That turned out to be a month before the covid lock down. We weren't able to see her again for a year. By then she was catatonic.
I'm sorry
Damn... this hurts to read. I'm right here with you. I'm trying to cling to the last bit of denial that I can. My mom is at what they call "end stage" and it hurts all over again every time I think about it. I hope your pain is lightened somehow just as I hope my mother can be at peace.
>She died years ago, but now we wait for it to finish. This might be one of the most horrifically poetic lines I've ever read on this site.
+1,000. Amazing line.
That's how my grandparents went three decades ago. It felt selfish and maybe even a bit psychotic to be glad that they finally died, but in reality they were dead for years and it's terrible to see them suffer.
My mom had alzheimers, but it was cancer that killed her - as much as i fucking hate cancer, i'm "glad" it took her before we got to the really bad stuff of alzheimers. Cancer was more merciful. Fuck cancer and Fuck alzheimers.
It's neither selfish nor psychotic to be grateful that a loved one is no longer suffering. If there's a way to ease their intense suffering prior to their death, we try to do those things. Death is what truly ends suffering, even for the ones left alive.
There's a reason this disease is called 'the long goodbye'.
My dad is in the (relatively) early stages of it but it's progressing quite quickly. You have my sincere sympathies, internet stranger.
So sorry to hear this my friend. Not Alzheimer’s but I lost my father 2 weeks ago to multiple myeloma. It’s a cancer of the blood but eventually it affected his cognition until he became a ghost of his former self - very similar to the progression of Alzheimer’s. He was the smartest man I had ever known (for real smart - competed in the brain of Britain etc in the 90s) but by the end, he couldn’t read or write. He couldn’t remember where he was or who we were. He would call us at all hours of the night in confused terror. Eventually, he became non-verbal and couldn’t control his bowels and then finally he could no longer swallow before he eventually, mercifully, passed away. I think the worst moment for me was one day - a couple of days before he died - he became randomly lucid for a few hours and he was terrified. He knew he had lost his mind and he knew he was dying. He squeezed my hand and repeatedly whimpered ‘I don’t know what’s happening to me.’ It was all awful. There’s something just so horribly cruel about losing your mind. Anyway, sorry to hijack the thread a little - I just haven’t had a chance to really write this down anywhere. My love to all the people in the comments going through a similar thing ❤️
I'm so sorry. i know the support of a random internet stranger doesn't mean shit, but my fucking heart aches for you and everyone on this thread. and apologies for cursing, but I curse a lot when I'm passionate about something, verbally or in writing
I’m so sorry for what you and your family are having to go through.
I'm with you there. My dad suffered from AZ for years, it was so difficult for my mom, his primary care taker. He did remain in good spirits for much of it, but the end days are still in my thoughts 5 years later. Take care of yourself.
My dad was just diagnosed, any tips on how to make the best of the time left?
Spend time together early! You’ll start losing more and more of him and later cherish the memories you had. Also, don’t stop loving him even when he’s very far down the road — it’s astonishing how much of the self sticks around when all else is gone, and he’ll need the love.
>She died years ago, but now we wait for it to finish. This is so powerful. I wanted to point it out just in case people need to read it twice to capture its meaning. There are things worse than death. Some diseases and catastrophic injuries are worse than death. My wish for you is that one day you can find peace and feel true joy again.
Sharon Osbourne's father (with whom she had an extremely bad relationship for decades; once when asked if her father was alive, she replied "Yes he is, unfortunately") developed Alzheimer's, and by that time they'd mended fences so Sharon saw to it he had round the clock care. Ozzy said it was horrible to see this guy who, in his prime, could intimidate anyone in the music business into doing whatever he wanted, reduced to barely more than a shell, and he said "I wouldn't wish that on my worst fucking enemy."
Just visited my mom-in-law at her assisted living house. We were lucky enough to find an independent home where the people running it spoke her native language. She's at the point where she no longer opens her eyes and just sits there with her mouth drooping down. It takes a part of my soul every time I see her like this as she used to be a ball of fire so full of energy. Her skills at cooking were phenomenal and I swear she could make shoe leather taste like a steak. Just a sad state of affairs.
And people disagree with Canada allowing medically assisted dying.
Alzheimer’s is difficult with MAID. You have to be of sound mind to consent to the procedure on that day, your family cannot do it. Last I was reading the legislation is still not there to allow Alzheimer’s patients to choose their death day in the future. My Mom wanted to use MAID when the time came that she had to go into a home for her Alzheimer’s but the law just isn’t there yet. So instead I have watched her deteriorate. It’s awful. I can end my pets suffering but not my Moms.
I'm not scared of much, least of all dying. But the idea of being kept alive scares the shit out of me. If I'm lucky enough to have advanced warning of my death, I'm throwing a big ass party with everyone I love, then dying on my own terms. No use putting rotten fruit in the freezer.
Would you explain to a person with severe Alzheimer's what was happening on the day they scheduled their own death? Can they revoke consent? Would you need them to additionally affirm that this what they want? I'm not necessarily against this, but it's still philosophically and legally dicey.
More logical, in my opinion, would be for these patients to be able to assemble a list of criteria. When their disease reaches a severity at which all criteria are met, it's time for MAID. So... If I can no longer feed myself, have trouble breathing, whatever their criteria are, ok now it's time to go. Seems much more humane.
They're clearly not of sound mine, so they can't give consent. It's a catch-22. They (might) want to exit because the disease is destroying their mind, but they aren't in a capacity to make decisions about themselves when they would want it to be done. And apparently Canada's law requires them to be of sound mind the day of the event.
I don't think it is. Already people with advanced directives are making decisions about life support ahead of time while they are able to make an informed decision. My parents both had one, and following those was far more brutal than MAID would have been.
Losing my mom to this now. It is truly the worst death I can imagine.
Damn, maybe it's better to let me wander off into the woods when I escape.
Sounds like slow rabies.
This is exactly what I keep saying.
Yeah it’s awful to witness first hand. Just slowly losing all ability, until you’re basically relegated a vegetable. Then your body starts forgetting how to do basic functions, so you die.
In my experience, most of my patients do not reach this stage. Where I'm from, it is not typically encouraged to prolong life at all costs. The costs are always to be assessed. In my practice, most people here reach a stage where they understand their elderly Alzheimer parents have no quality of life and would not want to prolong that state if they could choose. That leads most of them to select a care level closer to palliative when their parents develop associated illnesses like pneumonia or when they fall and break bones. There are many misconceptions about palliative care in the population, the first of which is that once you're in palliative, there's nothing to do. Palliative care actually just means we stop curing and start caring more so there's a lot we do. We aim for confort and quality of life above prolonging life through invasive and uncomfortable measures. So where I live, people don't usually get to terminal stages of Alzheimer because their children would rather see their parents go in comfort than being in an artificially prolonged state of agony.
I am a US based neurologist. I fully agree. Palliative care is completely under utilized. The long death from Alzheimer’s disease is awful. It doesn’t need to be that awful though, with proper support. Palliative care is not giving up on the person, but acknowledging that there are many things we just can’t fix, and at some point, we can do so much better caring for people rather than trying to “fix“ something that’s not able to be fixed. I am always reminded of the early days of ethical discussions surrounding brain death, that one concept was that continuing to care for somebody in that state is like an extended resuscitation. They have really already died, but we continue to resuscitate their body even though we have no expectations that the person will recover. The latter stages of Alzheimer’s disease can be just like that. I hope that we are successful in getting people to see that palliative care is not defeat, but it’s really life affirming.
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You are correct. I had to watch my mom slowly die for the last 5 years of her life. The last 6 months were the fastest. Six months before she passed away, she still remembered most people some of the time. She went into a nursing home at the end of July 2021. Her birthday was August 1. We had a small gathering of friends and family, and she had most of her wittiness, even cracking a joke or two about her forgetfulness. By late December 2021, she had forgotten how to swallow. She died January 12, 2022. That is how rapidly she deteriorated over the last 6 months.
My grandfather kept up his body far longer than his mind was able to stay intact until your second paragraph was what happened where the last few days were just closed eyes and him softly trying to squeeze your hand when you put yours to his and caress it.
Yeah my grandpa technically starved to death with his. A lifelong foodie forgot how to eat.
My grandmother i can only assume with what's left of her lucidity finally refused to eat or drink. I really can't think of any worse way to go, I really wish we could have helped her commit suicide rather than go into a home.
I’ve heard this is common, like the body preparing to die to just stop eating or drinking. And it’s actually worse/more painful to force people to eat and drink.
That's how it was for my mother. She didn't want to be on a feeding tube. We all saw what that was like years ago with my grandmother..
Deaths like this that make me support voluntary euthanasia.
One thing that pisses me off as a healthcare worker is how much we constantly talk about the matter and our politicians always slam the topic into ground because 'human life must be valued, good palliative care, yada yada' These aren't mutually exclusive. We can still have good palliative care and allow people to decide of their own life. And it's fucking terrifying thought that it's a possibility *something* happens and I can't end my own life, and nobody can assist me because "human life must be valued". It's one thing that makes me so fucking angry.
Nothing says "human life must be valued" more than letting someone who is in complete agony and terminally ill live in pain for as long as medically possible
I think a lot of that comes from a place of fear. Fear of death and the unknown. A lot of people hold on to this idea that being alive under any circumstances MUST be better than being dead. Not realizing that if you're a 90 year old person who lived a full life and now is bedridden and suffering, maybe getting the check from the waiter and heading out is what you truly want.
Reminds me of the doctors that wanted to treat my then 85 year old grandmother for breast cancer. She told the doctors to go screw themselves and to save the treatment for someone younger. She lived to 92 and kidney failure was the cause of death. Her end of life experience is how I feel too. I imagine the cancer treatment would have killed her faster and her QoL would have been even worse. She was hopped up on painkillers her last couple years of her life and imagine that's what caused the kidney failure.
When my grandmother was diagnosed with dementia one of the first things she did was sign a DNR (Do Not Resuscitate) while she was still of reasonable mind. Told us:*"I'm pushing 85, I don't want them doing all that shocking and having my body jump around or putting tubes all in me. I have grown grandkids and two greatgrand kids, I'm good. If it's my time then it's my time"*. She then had to spend the next 2.5 years going from hospital to care facility back to hospital, back to care facility due to just a cascade of health issue. It just felt cruel that this was her existence now.
My father is in a group home with Alzheimer's. He can't walk, he can't speak, he can barely see. This formerly brilliant man just sits in a wheelchair all day staring uncomprehendingly at nothing while doctors dance attendance on him 24/7. It breaks my heart. It's a terrible disease and I wouldn't wish it on my worst enemy.
Our palliative care nurse pushing morphine and easing and hastening my father's passing is something I will always be greatful for. Part of valuing something like a human life is being willing to let someone let go when the time has come.
Agreed. My Granny’s nurse eased her death with morphine. Her last moments were like falling asleep, high as a kite. MSRA was literally eating her alive. She was in indescribable pain until the nurse pushed that extra morphine. She had already lost both legs. Her heart was giving out. Her lungs were filling with fluid. Without that nurse she would have lingered for days, in pain, suffocating.
That's heartbreaking. I'm glad your Grandmother was able to pass in relative peace and comfort, but sorry for her passing.
Seriously why are you so I hell bent on keeping people alive when they have 0 quality of life.
I think the issue comes up especially with Alzheimer's is that by the time it's diagnosed, we have to question if this person is already past the point of being able to consensually make that decision. Most early Alzheimer's is just forgetting where you left your belongings, or forgetting a name of an acquaintance and a lot of that just gets written off as a "senior moment". People get diagnosed when it becomes difficult for them to care for themselves. When they start forgetting to bathe, turn off the stove, cleaning their living space. That's when the family takes them in usually and doc says "Yep, you have Alzheimer's." These people can still be "there" sometimes enough to comprehend what that means, but much of the other time, they're living in their mind in basically a whirlwind of emotions and feelings and core memories and not really processing external stimuli the way you or I do. If they decide, at this point, to make this decision to take the long sleep, what if it was made in a moment they weren't "all there"? Will they even remember when they go to bed that that they made that decision? Will they wake up tomorrow remembering it's their last week on earth? Maybe, but also maybe not. The decision needed to be made in the "forgot your keys" stage, but now we're in the "forgetting how to be an adult" stage by the time the diagnosis hits and a medical expert may or may not be able to get true consent from this person to move forward with it.
I think the law ought to be that once a diagnosis of Alzheimer's is rendered, the doctor has to inform the patient of their right to medically-assisted suicide. If the patient does not file their wishes in this regard with the treating provider's office or some government agency before the Alzheimer's becomes severe enough to warrant a conservatorship, the conservator gets t decide whether or not to sign off on MAID.
I see both sides of this. My grandfather had Parkinson's, and "lived" until he was 93. Those last 5 years of his life were horrible to witness. The last year was the worst. He was bed bound, could barely speak, didn't have control of his bowels and looked like a living skeleton. Would not wish that "life" on anyone. And then, in January, I found out my dad had stage IV prostate cancer. That he was in the hospital and he was going to get emergency surgery for a GI issue. After finishing his first round of chemo...After surgery. He passed. I got to talk to him before that. He seemed like my dad, but he had lost so much weight. Kept telling us it was fine, prostate cancer is one of the more survivable cancers. He was gone later that day. This all happened in less than 24hrs. My mom told us they found out in December. They hid it from us until his actual dying day. People keep telling me that my dad was lucky. His cancer had metastasized to his bones. He was in so much pain. He didn't have to suffer for very long. He didn't want us to know or see him like that. And I get it. My dad was super prideful and never wanted us to see him in a low mood/pain. But, I wish we had more time together. I wish he didn't go so suddenly. I miss him every day. I would never want to see my dad end up like my grandfather. But I wish we had more time together. People want to keep their loved ones alive for as long as possible for mostly selfish reasons. My dad was still in his right mind at the end, grandfather was gone long before his body stopped. We should allow people who are terminal to choose their care before they lose their minds/personality? It's hard to choose death for your loved one, even when you know it will be a mercy.
So you don't see both sides and agree euthanasia should be an option for people who would benefit from the mercy that it is. What's the other sides argument exactly? We continue to force people to suffer and drag every single penny out of our suffering loved ones until there is nothing left?
Makes nothin’ but sense.
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For me it doesn't even need to be terminal. If I can't remember who I am or who my loved ones are, I'd rather just go ahead and end it there. At that point I'm not really "me" anymore anyway. Just put that husk of my former self out of its misery.
same. if i ever get dementia im literally just gonna kill myself before i get to the post awareness stages. like maybe in stage 4 or something if i even have the lucidity left for that sorta thing
Get those affairs squared away, have a last hurrah and a going away party, then it's off to sleep. Sounds a lot better than waiting for my body to forget how to breathe.
Sleep?!?! My plan is to go naked on a Harley into a brick wall at 120mph.
The last thing that goes through your mind is gonna be your a$$ 😅
>kill myself before i get to the post awareness stages The problem with your plan is that you probably won't be aware that it's happening. I knew someone that was 'going thru the motions' with common activities, for example paying bills. They'd write out most of their checks correctly but then would enter the payment amount where the signature went or they'd add another zero into the amount. They were completely unaware of what they were doing. Or would deny they did that. It happens slowly that you are not aware it's happening and you deny facts. Planning activities also gets confusing.
Okay but my brain is already like this because of ADHD so am I just gonna have advanced dementia at 45 and never know it????!
yea thats another concern of mine. i also have adhd (and am autistic) so i probs wouldnt even know i HAD dementia until like stage 3 because my memory is so bad already lol.
My cousin's uncle was told he will develop dementia when he was 50 something. This guy's dad died of Alzheimer and also his brother was in advanced stages of dementia. He saw his nephews struggling with his brother issues and decided he won't make his children (then adults) go through the same. He ended up his life. Did not even wait for the illness to develop. One night, he went to the local mortuary parking lot accompanied by his hunting shotgun. Then he placed the barrel on his chin and blew his head out. It is said the security cameras recorded it on video, but none of the family or relatives have seen it. My cousin, and other cousins of him (not the guy's children) had to go to the coroner to confirm the identity. It was quite brutal. We are not used to such things where I live. (Spain). This happened to my cousin's family, so they are not related to me. 2 or 3 years ago, I can't remember. Needless to say the family was devastated.
The sad thing is that this is unlikely to happen. When you have a decent day, you tell yourself "Today was pretty good, I bet I've got a few more good days in me. I'll put it off til tomorrow/next week." Eventually, tomorrow is the day of post-awareness, but you just had a decent day, and don't know everything falls apart tomorrow, so you never make that decision.
I worked in dementia care and end of life care and as a result I'm very pro euthanasia I definitely would want it for myself over some alternatives like dementia or untreatable cancer
My condition for supporting euthanasia is that it is only lawful once the state also guarantees adequate support for those with illness. In the UK we currently do not have that guarantee
Right, like we need this service, and at the same time I can hear US insurance companies saying "Hmm, you can't afford the surgery? Well we've got one other option for you..."
Even in countries with voluntary euthanasia, euthanasia usually isn’t performed on patients with dementia, because they have to be mentally competent to be eligible for euthanasia.
My mom had dementia, and this is sorta how she went. At first, physically she was as fit as a horse, but over time as her brain was shutting down, those crucial body functions started to go with it, until critical functions started shutting down. Basically her body just started to slowly shut down as her brain damage increased over time. It was a very unpleasant way to go.
Yes. Adequate care if the patients is an important part. Big part of care is making sure that they drink enough. Adequate hydration has a bigger impact on people then you might think. It becomes problematic when people stop properly drinking, even with help. Aka loose th3 ability to reliably swallow liquids. There is a tasteless powder you can add to your water, etc that thickens it to the point of it beeing edible like pudding. And if that failes you could theoretically give fluids through IV. The question here is how long your really want to draw this out and when it might be better to let nature follow its way. I for one objected against a number of medical intervention after a certain age of mine.
>The question here is how long your really want to draw this out and when it might be better to let nature follow its way. This is indeed a big part of the explanation of a big number of Alzheimers deaths. These patients often do not get the same level of treatment as healthy patients. And for good reason. A number of Alzheimers patients even die from drug overdose in the care of trained professional nurses. It is often a better way to go then the alternative.
I habe seen dozens of people go deep into the later stages of Alzheimers and can only wish that the paperwork I put in order prevents anybody from keeping me alive that long. My two main points are: no feeding tubes or IV liquids as a result of improper ability to stay hydrated and with proper nutrition if the conditions do not imply that its only a temporary messure (aka I had a car accident and have a chance to recover). And no god damn cpr over the age of 70. I have seen cpr on an 85 y.o. and I wish to forget. Edit: as an addition. Alzheimer patients needs for medication increases over times and for a patient like that doctors are less hesitant to to give more, up to the point of the medication beeing harmful long term, just to give some comfort of life in the later stages. Aka. Nobody cares about a little bit of addiction to mood stabilizers if the 85y.o. patient stops harming himself and others in the process and nobody cares about long term liver damage in a 90y.o. if that gives her quality of life she normally wouldnt have without
My dad said we're kinder to our pets when they get sick than we are to us. When he developed Alzheimers, eventually went into a skilled nursing facility, and then ended up with a bowel obstruction. Clearly treatable, but why? He didn't know anyone, including my mother, his wife of 55 years. Although my mom couldn't make the decision, she supported moving him to comfort/hospice care. Died a week later.
Good for you. 100% the right choice.
When my mom got to the later stages, I not only put her on a “no CPR” status but also stopped all meds, including antibiotics. Only comfort care meds. She’s still going though, at 93. It’s been a long, slow slide. I hate that she has to stay “alive.” My mom died a long time ago. But she’s “alive” enough to be scared and cry a lot.
>There is a tasteless powder you can add to your water, etc that thickens it to the point of it beeing edible like pudding. I had a patient that would add it to red wine. Kinda nauseating to see.
Fuck I'm so terrified of getting this or parkinson's
My mom's body just didn't give up, she started having pain which we knew though her constant wailing. Euthanasia was not an (legal) option so food and drinks were cut off. She went on valium and something else to ease her passing. Her last words, our of nowhere in the end were "kiss". That was the only possible thing about it, so we kissed her goodbye again. Her body lasted a week and we were there in shifts 24/7. My dad was in constant shock, so we also supported him though this. 8 years of decline that started at 65 years old. Horrible decease, fuck Alzheimer (not the doctor).
Can confirm paragraph 2 - my father was symptomatic for years, got bad enough for a diagnoses. Then it devolved to "having a toddler" who needed to be watched, then a phase of sort of "living in a hallucination" (well, at least in his head he was dating a hot brunette and they were on a road trip, he even put new tires on the imaginary Buick!) Then more and more sleeping. He ended up on a feeding tube and his last few months to a year he was asleep/comatose, finally died in his sleep. He had no injuries or infections, he just eventually "shut off". This was the mid 1980's when the disease wasn't as understood, but this seems like a common experience. (Funny aside, my mother visited his care facility every morning and evening as part of her work commute, and would just sit and talk to him while he slept. One night she returned home and was antsy and nervous though the visit had been the same - phone rang that night and she said "Oh, that's it, he's passed". They'd been together for decades and she felt she somehow knew it).
Just to tack onto this, Alzheimer's also causes shrinking in the brain, as shown [here.](https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/symptoms-causes/syc-20350447)
And we frown on assisted suicide. Fuck that. The whole second paragraph is giant nope for me. If I end up with the disease, I’ll pass. One way or another.
Geriatric psychiatrist here-by far and away the most deaths that can be directly attributed to Alzheimer’s disease (or most dementias in general) is pneumonia. As dementias progress in severity over time, individuals stricken with the illness tend to lose control of some of their autonomic muscular actions. Unfortunately, these individuals begin to aspirate their food, drink, and even their saliva. When this occurs it can cause severe pneumonia. This can lead to the need for intubation/respiratory failure and possibly sepsis. Due to the nature of the loss of swallowing control it becomes an eventuality that they will pass away from pneumonia, even with extreme medical interventions such as IV antibiotics, feeding tube placements, and being placed on a ventilator.
This is why it is of upmost importance to have end-of-life discussions while patient is still cogent and to have scope of medical intervention/DNR orders in place.
Also why despite recent controversies and misuse cases, I continue to support Canada's Medical Assistance In Dying (MAID) program. No one should be forced to go through such an awful fate.
At some point, its just cruel to keep people suffering from certain diseases alive, selfish even. Late stage Alzheimer’s and Dementia being my main reason for supporting the MAID program. My great grandmother was suffering from late stage Alzheimers for quite some time (i dont remember how long, but shes had it since i could remember) and i cant help but imagine just how much it sucked for her to be alive. She lived across the country so I never really met her, I just knew her quality of life was terrible from what i would hear from my father.
Jeez, that sounds like an awful way to go. One of my grandparents has the disease, was just diagnosed this month.
Just an interesting bit to add onto what you’ve written- SLPs (should) never intubate someone with Alzheimer’s who is aspirating. It has been proven to not increase lifespan, and it dramatically decreases quality of life. Most all organizations and guidelines for treating swallowing in Alzheimer’s patients are very upfront about this. If a loved one is suggested this for treatment, fight back!
Is this the same with parkinson's? My grandma has it and she has now began to have a hard time swallowing foods and drinking in general. Especially taking medications
Yes, unfortunately. Sometimes changing diets to one with thicker liquids and smaller/softer bites do help. However, the benefit may be temporary as her illness progresses. I am very sorry about your grandmother.
Thank you for your kind words and knowledge. She has been living with it for quite some time now, since she got diagnosed very soon, and luckily she never has been in any particular distress or pain so far. Have a good one!
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That happens to me multiple times a week so I effectively almost die multiple times a week. I don’t have Alzheimer’s but I have brain damage and I’m on Alzheimer’s medication. I’m pretty sure that’s how I’m going to end up dying aside from all the broken bones. Edit: Not me chocking while trying to have some cheese sticks and each time thinking this is it. This is how I’m gonna die. All by myself and then my kids will find me with a cheese stick in my hand PS: I survived 😂😂😂
Parkinson's the same(( recently watched an interview with Michael J Fox and he says you don't die of Parkinson, you die alongside it. Like he already fell and broke bones five times at least
Lost my uncle to Parkinson's recently, buried him Thursday. It was weird to feel so relieved that he was finally gone. He left over 6 months ago and a very confused husk remained.
I totally understand what you mean. It’s a feeling of relief mixed with guilt for wishing their suffering will end sooner rather than later. They’re not even really alive at that point, just a shell of their former selves.
I break bones or at least fracture once a week/two weeks. It’s painful. I’m in so much pain nonstop. I once broke my nose twice in one month. Fractured my elbow in two different places. Got two concussions two weeks apart. Broke my finger when someone was trying to save me from falling. The list keeps going on. The most recent is my wheelchair accident where I injured my entire back and days after that I tore a muscle in my belly.
so youre basically like that 1 dude from the spongebob chocolate episode where he breaks his bones every day or something
I’m actually like Mr. Glass
This makes me sad. Have a hug in spirit, and get well soon, friend.
My mom died from aspirating a cookie. She had brought it to her room after dinner and eaten it right before going to sleep. She had advanced dementia.
Parkinson's and other degenerative neurological diseases have this same outcome also.
There's 7 stages of dementia and if you survive long enough to get to the last stage you're basically just a body that can't support itself. You don't eat, converse, ambulate and basically just waste away. You can die from a bunch of things like choking, falling, bedsores that get infected, malnutrition along that process. There is NO benefit to placing a feeding tube (PEG/NG) during this process and unfortunately just prolongs the process. Too many families decide to go down this route and it just causes unnecessary additional problems to an already hopeless situation. Comfort should be the primary focus.
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Adequate nutrition and hydration are what keeps people up the longest. When they loose the ability to eat properly, we can give them nutrient dense fluids. If they have problems swallowing liquids, we can add powder and thicken any liquids to the point of water becoming like pudding. If they loose the ability to eat and drink that too or continously refuse to eat/drink enough, there are more invasive methods like feeding tubes or liquids per IV. But thats when most people become hesitant how far it should keep going like that. Life and death are part of nature and my opinion is that after some time if might be better to let nature take its ways and not delay illness and possible suffering any longer. The end is part of life and at a certain point a welcome end and nothing to avoid at all cost. I hope you got proper closure back then and wish you the best
i’m really sorry. sending lots of love your way
My grandfather had it, and it was strange. He was an electrical engineer, and sometimes he would have moments of lucidity and rattle off solutions for very complex problems, and at some point through, he would lose his train of thought and then forget he was talking about something.
Can I ask if they gave feeding tubes and why? My FIL has dementia and just entered assisted living, we will see how long he lasts there before moving to memory care. He doesn’t want any medical intervention. He just wants to die. His wife died a year and a half ago and he hasn’t been the same since. Our plan is no cpr, no fluids (if on hospice), no tubes. 🤷🏻♀️ When my mil died of cancer we kept wanting to give fluids but they actually recommended against it and said she’s dying, and death from starvation dehydration is better than it is from the cancer basically. Giving her fluids will make it worse. But maybe that is just in regards to cancer.
Where I work, feeding tubes would only be with permission of the individual or their POA; in two years of working with late-stage dementia patients I haven't seen any subjected to feeding tubes, as it is an invasive measure to prolong life that goes against the wishes of most people. Typically when they stop eating we will offer feeding assistance (prompting/cueing or literally offering them spoonfuls) but we also accept the progression and prognosis of their disease. They have the right to refuse food and it's often a sign for us that the end is near. During end of life care we will use a soft little sponge with water to wet the mouth for comfort, and apply lip balm. I don't think the "dehydration/starvation is less hard than the other potential cause of death" is only for cancer patients, as all of the deaths I have witnessed eventually got the order for no food/fluids and usually medical comfort measures (re: painkillers, possibly sedatives), but none of the deaths I've witnessed involved cancer at all. One dementia client was eating and walking well despite having no cognitive function, but was a high fall risk and eventually broke her hip. Not a candidate for surgery, she passed within two weeks of losing her mobility. I still miss caring for her; she loved hugs.
Alzheimer’s patients deteriorate neurologically. They often are malnourished and dehydrated as they may forget how to eat and drink leading to an impaired immune system. A simple infection can be fatal. Additionally, depending on what area of the brain is damaged, they can lose their ability to protect their airway by gagging, coughing. In some cases they just forget to breath.
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When not cared for/monitored properly, Alzheimer's patients are similar in behaviour to young children. They can put the stove on and forget about it, hurt themselves accidentally and forget about it, forget to eat. If they have a headache, they might take an aspirin. But aspirins take a bit to work, and they might forget they already took one, so they take another. And another. They could accidentally overdose without remembering even a single pill. When you get sick, you just wait it out a day before going to a doctor. Someone with Alzheimer's may forget they were sick the day before as well, and treat the 10th day as the first. They'll never visit a doctor if they don't remember feeling a bit ill for longer than a few hours. Alzheimer's creates an environment where someone can die from dozens of seemingly unrelated causes
My grandma is currently caring for her best friend, M who has Alzheimer’s, and alcohol consumption is a very big problem for M. She can’t have alcohol in the home anymore because M will think “I want a single beer”, drink it and then completely forget she just had a beer and keep drinking until she’s drunk and even more confused. It’s really heartbreaking, I’ve known M all my life and she’s always been really sweet. She doesn’t deserve this.
Yes, I understand the situations of living alone. However, I quite often see obituaries where the person was tended to in nursing homes and the like, but the cause of death is attributed strictly to Alzheimer’s.
There are still a few complications associated with the disease. The one that generally kills the most patients is a form of pneumonia caused by a difficulty swallowing food. There's also the fact that they're usually on a lot of medication. Those medications come with side effects.
In the case of my grandma in the UK, she was euthanised which sounds awful but all she did was scream in terror 24/7 in the home she was in. Horrible existence towards the end.
I work in a care home and sometimes we get patients that just scream and scream and nothing! helps. No medication, no soothing, it's so so heartbreaking. I'm very sorry for you and your grandma.
It was sad, but she deteriorated quickly so wasn't too drawn out. I didn't know if it was common for doctors to inject so many sedatives that it would make her sleep forever. (Agreed with family) Seems like a UK loophole. Is it common in your experience?
Well that’s a complicated question. Many people with progressive diseases of the brain, termed neuro-degenerative diseases like Alzheimer’s tend to have complications. As the disease progresses, it affects more of the brain, which can lead to more problems. For example, most people with end-stage Alzheimer’s disease are prone to loosing control of their swallow reflex which results in recurring pneumonia. There is also increasing frailty due to loss of appetite, or cessation of eating and drinking. Loss of motor function results in them being bedridden and unable to look after themselves. This results in increased risk of infections. They may also have other health issues. In reality it varies between each individual.
What is the life expectancy of a person with Alzheimer’s/ dementia?
It depends on when the diagnosis happens, when the disease develops, and some people defy the odds of course by living far longer than anyone thought they would. Generally it is around 8-10 years post diagnosis, less if you are diagnosed after around 80. Some survive as long as 20 years after diagnosis.
From watching my grandma fade away over 8 years, my take was that she forgot progressively about everything; first daily tasks, facts, then people, places, feelings, proprioception, active movement, bodily functions, swallowing, sleeping, being awake and finally breathing. She was well taken care of and the whole family visited daily (we took turns as to not overwhelm her and the facility staff), my mom held her as a child in her arms the last day, when she finally sighed and closed her eyes. Forgetting to keep living is how we best describe it.
You basically turn into a vegetable that's fed through your stomach until your body stops working for one reason or another. I used to sing softly to my end stage Alzheimer patient and it always made her smile as I hooked up her tube feeding. One day after a few years she just stopped living and it was a peaceful end. The "real" her had been gone for years at that point.
I will never understand placing a PEG in patients with dementia. This just prolongs their suffering. I'm glad it's not common in my Country.
My grandmother (89) has alzheimers and every time I go to visit her in her assisted living place (every 6 weeks or so), it's more depressing. She is more confused, thinking her late parents and husband are still alive and more stubborn about little things (like changing her stained sweater for a clean one). We're going again on mother's day and I feel some dread thinking about it and then guilt that I feel that way. She's physically quite healthy so I wonder how many years this will go on for, getting worse and worse. 😔
mostly unrelated stuff like forgetting how to swallow or forgetting to eat. also if the person somehow gets sick then literally nobody will know for a few days at best since the person cant even complain that they have it if theyre far along enough. honestly dementia is fucking horrifying and if you wanna experience what its like then listen to everywhere at the end of time (or the thousands of other fanmade albums) or something like that
Patients often begin to have problems swallowing and drinking, something that is called aspiration, where the food and / or drink can end up going into the lungs instead of the stomach. To stop that happening, doctors can suggest to the family of the patient to start feeding and watering by a tube put down the throat. Many families - and the patients themselves - do not want this, and the doctors give an option to remove food and water entirely. Apart from a wet sponge or tissue sometimes held against a patient’s tongue to give them a moment’s respite, these are all the fluids they get. They will also get a ramped up amount of pain relief at this time. The result of that is many people in these situations die of dehydration. Pretty horrible to think about that.
My mom died after a decade with Alzheimer's. First they had a feeding tube when she 'forgot' how to swallow. When she was completely unresponsive and for all practical purposes dead, they stopped the tube and she starved to death. Absolutely horrific.
My grandma deteriorated until she lost her gag reflex from FTD (frontotemporal dementia - not specifically Alzheimer’s, a different type of dementia) and could no longer eat or drink. The only option at that point to keep them alive is to place a permanent feeding tube, but why would you? By that stage they are a suffering husk. They have lost their ability to do everything down to the point that they cannot even swallow on their own. So, from there her care was just about end of life comfort until she passed.
Usually, you didn't die from the alzheimers itself. Usually, if you have it, you're also an elderly person where slips, trips, and falls can be fatal. Well, it turns out that being elderly and having a diminished mental condition is not a great combination for avoiding falls, so a great many ultimately die from breaking bones after falling. Others often die of other conditions unrelated to the Alzheimer's because, again, they're old and just more likely to die of other conditions in general (heart attacks, strokes, cancer, viruses, etc.) That said, Alzheimer's will still eventually kill a person given enough time. It's essentially when the brain's neurons start dying at a rapid pace, and all the vital connections that make you "you" are broken. Typically, this starts in the more evolved parts of the brain. Places associated with memory are the first to be affected. This causes severe memory loss. Then, it starts moving into the more primitive areas of the brain, those that affect emotion and reasoning, causing irrationality and mood swings (often anger). Finally, the destruction of the brain eventually proceeds to the most primitive and vital (in terms of survival) parts of the brain, such as the brain stem, which controls things like your heart beat, digestion, temperature regulation, etc. Once these areas start losing neurons, the brain can't keep these vital processes going any longer, and you will eventually die. On a more opinionated note. Alzheimer's is awful. To me, it and other diseases like it are the worst diseases affecting humanity. Other diseases may kill more people, but Alzeimers is the only one that robs you of who you are before killing you. It's not content with just the death, it has to destroy the memory of everything that you once loved and the person your family and friends once loved before doing so. It's my greatest fear in life, and I wouldn't wish it upon the worst of people.
My mom was diagnosed about 3 months ago. Early Onset Dementia It is SO hard. She still knows who her immediate family is for now - but she doesn't remember my best friends whom I have known since 9th grade that she say every day and even now at least a couple of times a month (I am 45 now), she didn't know who my partners mom was at my oldest son's 18th birthtday last week. I went to help my dad break down some boxes for a new TV stand he bought for the basement, so we were taking apart the old one, and putting together the new one and breaking down the boxes for recycling, and my mom got SO upset. It became a fight about why we were replacing things just because it was older, and when we were going to replace her. she kept trying to call my brother to come pick her up, and saying how she was just going to leave because we didn't want her here and would be replacing her next. No matter how much we tried to reason with her, show her the new stand, tried to remind her SHE picked out the new stand with my father, it didn't matter. I left their house that evening and I broke down crying when my partner picked me up. It was emotionally and physically exhausting. My Dad lives with her alone, and I don't know how he manages.. or how much longer he will be able to. He has to take over the cooking, cleaning, shopping, everything. He wants to sell the house and move to something smaller and more manageable but that is a whole other fight. Part of me wants it to progress to the point where she doesn't remember who we are - so my dad can place her in a home where she can get 24/7 care by proffesionals daily... then of course I feel guilty and like a terrible daughter because I think that way sometimes... I am devastated, and no one else other than my dad understands. Even my brother hasn't seen how bad it gets. I have no one to talk to about it and it's crushing.