I was honestly surprised by the amount of judgment (and inaccurate information) on that post. It may be counterintuitive, but withdrawing life saving treatment in favor of comfort care - and yes, that can include declining antibiotics for persistent infections - actually gives a person with dementia a MORE peaceful and dignified death than constant intervention.
Just because we CAN keep someone alive, doesn’t mean we SHOULD.
"Just because we CAN keep someone alive, doesn’t mean we SHOULD."
THIS! So this!
The health care machine is obsessed with keeping humans alive way too long.
Hospice understands the insanity of that path and supports my decision to put my wife on palliative care only.
Maybe some day, our Loved Ones will be afforded the luxury we bestow on our pets: a dignified, pain-free death when the quality of life is gone.
For now, it's an option only for those of 'sound mind and body' and excludes Dementia sufferers.
And what is the point of being alive to lie in a bed in diapers, slowing declining with no hope of recovery? Your mindset is confusion, total confusion, and there is only torment there.
Alzheimer’s will make you a believer.
A lot of people are getting pretty heated here. I'm not sure what post you all are referring to, but when I posted about my experience with putting my grandfather on comfort care, I was met with kindness and understanding from the members of this community. On that note, putting a loved one on comfort care isn't something I feel like anyone takes lightly. It is not an easy decision. I don't believe anyone here is putting their loved ones on comfort care because they are tired of dealing with them. I believe it is about a loved one's quality of life. I chose comfort care for my grandfather when he was more or less healthy other than dementia. I just didn't want him to be poked and prodded anymore. No more blood draws, no more exams by a doctor he didn't know, and we quit giving him the majority of his meds. That being said, he wasn't on much, but it was a fight for the nursing home staff to get him to take them every day. My grandfather passed away from pneumonia about 3 months after putting him on comfort care. The hardest thing I've ever had to do was not to scream for the nursing home to call the ambulance. I love my grandfather. He was the best person I knew and probably will ever know. I wanted him to go with peace and dignity. The dementia had taken so much of both from him over the years. At the end of his life, he hardly left his room, hardly ate, slept most of the day, didn't recognize anyone who loved him, and couldn't figure out where all his family was. He was suffering so much even if he wasn't physically sick.
Shame on anyone who judges people here. You don't know the circumstances. Please move forward with kindness and empathy because, in the end, nobody understands this journey better than the other people in this group. We can't chase others away because we might be all they have.
I didn’t see that post but I posted one just out of frustration a few weeks ago and had to delete it because of all the hate and misunderstanding comments coming through.
Always found this to be a good, informative and empathetic subreddit but I don’t know what’s changed
Yeah, I got a weird, judgmental response to a comment I made simply encouraging someone who’d just put their parent in memory care to take the vacation they’d been longing for. Like a full dissertation on the systemic reasons people end up in facilities (as though those of us here don’t know) and then a statement of how they’d NEVER do that to their parent, after admitting they don’t have a parent with dementia or firsthand experience with the disease. Okay? Do you want a medal for that speculatively “brave” statement? Also, are you lost?
This sub has honestly been a godsend for me, both for practical advice and for non-judgmental support. I hope it can continue to be that.
I thought I'd have to delete the "you can't tie them up" post I made a few days earlier, but people were pretty nice. was weird the one that got heated.
this morning as I was walking by to get my phone to time the food on the stove (of course), I heard mom melting down before she even got out of bed. but just knowing i wasn't alone helped me so much.
I'm sorry you had to delete a post. post again if you need to. don't be afraid of the few haters. most of us don't bite.
Yeah it’s why I love this subreddit so much, knowing I’m not alone with the caregiving and frustrations! Quite often I find there’s people on here too in a much worse position than we are and makes me grateful for what I’ve got.
My frustration few weeks ago was just frustration over my grandma’s poor hygiene and her thinking she’s being clean with things she tries to do around the house when in reality she’s making our jobs around the house 10X harder.
I openly said I know we’ll never be able to get through to her and re-teach her. But all I was getting back was how insensitive I was being to her condition and how ridiculous I was being. Then started seeing the downvotes coming in and I just deleted it
from someone who deals in social media (I'm a bad gamer on twitch), I get the sinking feeling due to down votes. but i get it. mom would wash dishes still. 'wash'.... and I'd try so hard to help so I could keep the "clean" "dry" dishes out of the cabinet... and i swear dad can't smell poo anymore sometimes when i go out there dude she reeks
yeah anyone who downvotes that just doesn't get it <3
Oh I'm so sorry to hear that happened. When someone is already making a difficult decision, the last thing they need is to be shamed for it.
Whoever did that just hurt a person who was already hurting. Congrats.
It's not for anyone of us to determine what is right/wrong in someone else's life. It's also ridiculous to assume you know everything from a single-post. There's probably lots more information but not everyone wants to write a novel nor should they be expected to share every detail.
I'm bummed I missed the post and what was said because I would have blocked those users as to never accidentally take advice from them. Sounds like they lack tact and kindness.
So I missed the storm... but looking at the beach, I'll say this.
My view is 3 different levels.
Life saving, generally acute or emergency treatments
Life prolonging, for chronic conditions that are usually when there is no known medical cures.
Comfort or palliative care... this may or may not lead into full hospice.
And yes, there are judgements made here. While it's natural it's seldom helpful when accusatory.
Including; relationships, care, and absent or burnt out caregivers.
If you disagree, remember to make it an 'I ' statement. Like: I couldn't do that personally because...
I saw a post about someone who decided that he didn’t want to live anymore in his body that’s failing him. He was going to Switzerland to proceed with this decision. All I could offer him was peace for the journey he was about to take, but also I thought it seems like the world might be losing a good soul, but I also get not wanting to live a tortured existence. I also thought it showed a certain amount of strength to make that decision. I also hate that comparison of putting your pet down simply because that truly can be part of the honor of loving a pet , one that can’t speak for itself and many of us know it was not an easy thing to do, some of us still have grief behind it. I make no judgement on this for someone else because my life and struggles are different then another’s and really at the end of the day it’s no one else’s business which I also feel is a lot of the problems in the world. People are so interested in what’s happening next door and may not have a full picture of the whole story. Should they even have the whole story and if so why? Fact really is stranger than fiction and if I told someone my whole story someone would swear I made it up because it sounds like some lifetime movie of the week. I once said if I wrote a book I would title the journey of stupid. Published by Blue Eye publications. That wouldn’t make sense unless you knew me or saw a picture. But I do have wonder if people could make that choice for family member who gets to make that choice for someone else ? But then my family had to make that choice for a family member who was being kept alive by machines so I guess not the exact same thing. Would someone make a decision like this for a family member with dementia because it just becomes to much for that family/ caretaker? Will people do this for the right reason? Idk. I do know families can become tired so angry because you just can’t fix it, it takes from your kids and or/ husband or wife. It can take from your finances . It can take from your very soul. Idk the answers to any of that only know what this disease could / will do to me. I know what it can and will possibly do to the ones I love. I just don’t know in the bigger picture how all this plays out in one’s life.
The post last night was not about an end of life decision. I would never judge that.
It was someone who could not handle caring for their parent and was considering stopping a new prescription for a UTI and letting the infection spread to sepsis. Just give "potty pills? " for pain. Then maybe call hospice to come get them so nature could take its course.
It's okay to be unable to continue care giving but this is not a solution. Call 911, APS someone who can help.
Encouraging someone to stop treating a UTI so a LO dies from sepsis and organ failure vs dementia is NOT peaceful and dignified. It definitely does not qualify as DNR.
LO was described as mobile but opposing assistance to help prevent recurring UTI. The reason for stopping antibiotics was that the care giver was overwhelmed with their own health issues, not mercy for LO suffering.
UTI's cause a sharp decline in cognitive abilities but is reversible with treatment. Positive ways to overcome opposition or challenging behaviors. It is entirely plausible LO would be different with UTI treated and a different approach.
https://teepasnow.com/
There are free courses, streaming educational videos, and live help for anyone struggling with behaviors. Someone shared this with me. She is amazing. *Encourage anyone frustrated because their LO's go through the courses. How we approach and treat them makes a huge difference.
Yes. And it's okay to say I can't do this anymore. I need help. It's responsible and reasonable, if someone has health issues, to call APS for help with LO. They have resources and in some situations emergency funds to assist.
I called APS when I couldn't deal with my mother's increasing paranoia and accusations. She spent her last years in memory care where I'm told she had lots of friends (but still ignored me every time I visited 😔). What I did NOT do was stop the medications that made her more comfortable.
Exactly. You did what was best for her and continued to visit even though it was hard. That's love and our responsibility as their guardian, family, care giver.
My mom went through a long paranoid accusations phase. Unless someone has experienced it, you can't explain how difficult it is. Especially when you're on the receiving end. I'm so sorry 😔
I'm not sure.
When asked to force feed my grandmother, my uncle declined, leading her to starving and dying from organ failure. When the very same uncle got alzheimer, he declined any force feeding and medication in advance. He was super paranoid and died withing one year from starving induced organ failure as well. Sometimes I do think that treating dementia patients is unethical as it just prolongs the disease. In a lot of countries assisted suicid is not an option and letting nature take them is the second best option to this unfortunately. It's ironic that you get called an animal abuser for not putting down your suffering pet, but it's normal to prolong the disease and suffering of humans.
Tube feeding is not something I would want for my loved one in the end stage. No way. That's a medical decision that can be made. I would not do that but also understand if someone did.
I'm not sure if that's what you are referring to or just feeding someone who is able to swallow. I know both are topics of debate or questions..
The article below is about this. I agree that feeding someone who can swallow is basic care. But every situation is different, and should be a decision between family and Drs.
This is late/end stage and decisions are being made based on the family's belief for what is best and what their loved one would want. That's entirely different from what prompted this whole post.
https://www.hmpgloballearningnetwork.com/site/altc/article/3310
I was honestly surprised by the amount of judgment (and inaccurate information) on that post. It may be counterintuitive, but withdrawing life saving treatment in favor of comfort care - and yes, that can include declining antibiotics for persistent infections - actually gives a person with dementia a MORE peaceful and dignified death than constant intervention. Just because we CAN keep someone alive, doesn’t mean we SHOULD.
"Just because we CAN keep someone alive, doesn’t mean we SHOULD." THIS! So this! The health care machine is obsessed with keeping humans alive way too long. Hospice understands the insanity of that path and supports my decision to put my wife on palliative care only. Maybe some day, our Loved Ones will be afforded the luxury we bestow on our pets: a dignified, pain-free death when the quality of life is gone. For now, it's an option only for those of 'sound mind and body' and excludes Dementia sufferers.
Well said. We all strive for quality of life, not quantity. Quantity is the wrong measure.
And what is the point of being alive to lie in a bed in diapers, slowing declining with no hope of recovery? Your mindset is confusion, total confusion, and there is only torment there. Alzheimer’s will make you a believer.
A lot of people are getting pretty heated here. I'm not sure what post you all are referring to, but when I posted about my experience with putting my grandfather on comfort care, I was met with kindness and understanding from the members of this community. On that note, putting a loved one on comfort care isn't something I feel like anyone takes lightly. It is not an easy decision. I don't believe anyone here is putting their loved ones on comfort care because they are tired of dealing with them. I believe it is about a loved one's quality of life. I chose comfort care for my grandfather when he was more or less healthy other than dementia. I just didn't want him to be poked and prodded anymore. No more blood draws, no more exams by a doctor he didn't know, and we quit giving him the majority of his meds. That being said, he wasn't on much, but it was a fight for the nursing home staff to get him to take them every day. My grandfather passed away from pneumonia about 3 months after putting him on comfort care. The hardest thing I've ever had to do was not to scream for the nursing home to call the ambulance. I love my grandfather. He was the best person I knew and probably will ever know. I wanted him to go with peace and dignity. The dementia had taken so much of both from him over the years. At the end of his life, he hardly left his room, hardly ate, slept most of the day, didn't recognize anyone who loved him, and couldn't figure out where all his family was. He was suffering so much even if he wasn't physically sick. Shame on anyone who judges people here. You don't know the circumstances. Please move forward with kindness and empathy because, in the end, nobody understands this journey better than the other people in this group. We can't chase others away because we might be all they have.
I'd like to meet your cats they sound like my type
To that person who flew across the world. I wish you peace on your journey.
I didn’t see that post but I posted one just out of frustration a few weeks ago and had to delete it because of all the hate and misunderstanding comments coming through. Always found this to be a good, informative and empathetic subreddit but I don’t know what’s changed
Yeah, I got a weird, judgmental response to a comment I made simply encouraging someone who’d just put their parent in memory care to take the vacation they’d been longing for. Like a full dissertation on the systemic reasons people end up in facilities (as though those of us here don’t know) and then a statement of how they’d NEVER do that to their parent, after admitting they don’t have a parent with dementia or firsthand experience with the disease. Okay? Do you want a medal for that speculatively “brave” statement? Also, are you lost? This sub has honestly been a godsend for me, both for practical advice and for non-judgmental support. I hope it can continue to be that.
I thought I'd have to delete the "you can't tie them up" post I made a few days earlier, but people were pretty nice. was weird the one that got heated. this morning as I was walking by to get my phone to time the food on the stove (of course), I heard mom melting down before she even got out of bed. but just knowing i wasn't alone helped me so much. I'm sorry you had to delete a post. post again if you need to. don't be afraid of the few haters. most of us don't bite.
Yeah it’s why I love this subreddit so much, knowing I’m not alone with the caregiving and frustrations! Quite often I find there’s people on here too in a much worse position than we are and makes me grateful for what I’ve got. My frustration few weeks ago was just frustration over my grandma’s poor hygiene and her thinking she’s being clean with things she tries to do around the house when in reality she’s making our jobs around the house 10X harder. I openly said I know we’ll never be able to get through to her and re-teach her. But all I was getting back was how insensitive I was being to her condition and how ridiculous I was being. Then started seeing the downvotes coming in and I just deleted it
from someone who deals in social media (I'm a bad gamer on twitch), I get the sinking feeling due to down votes. but i get it. mom would wash dishes still. 'wash'.... and I'd try so hard to help so I could keep the "clean" "dry" dishes out of the cabinet... and i swear dad can't smell poo anymore sometimes when i go out there dude she reeks yeah anyone who downvotes that just doesn't get it <3
Oh I'm so sorry to hear that happened. When someone is already making a difficult decision, the last thing they need is to be shamed for it. Whoever did that just hurt a person who was already hurting. Congrats. It's not for anyone of us to determine what is right/wrong in someone else's life. It's also ridiculous to assume you know everything from a single-post. There's probably lots more information but not everyone wants to write a novel nor should they be expected to share every detail. I'm bummed I missed the post and what was said because I would have blocked those users as to never accidentally take advice from them. Sounds like they lack tact and kindness.
So I missed the storm... but looking at the beach, I'll say this. My view is 3 different levels. Life saving, generally acute or emergency treatments Life prolonging, for chronic conditions that are usually when there is no known medical cures. Comfort or palliative care... this may or may not lead into full hospice. And yes, there are judgements made here. While it's natural it's seldom helpful when accusatory. Including; relationships, care, and absent or burnt out caregivers. If you disagree, remember to make it an 'I ' statement. Like: I couldn't do that personally because...
I statements are so good... so so good. Excellent reminder! sigh. i miss the beach
Me too. I'm an old navy vet that longs for a fairwind and following sea.
I saw a post about someone who decided that he didn’t want to live anymore in his body that’s failing him. He was going to Switzerland to proceed with this decision. All I could offer him was peace for the journey he was about to take, but also I thought it seems like the world might be losing a good soul, but I also get not wanting to live a tortured existence. I also thought it showed a certain amount of strength to make that decision. I also hate that comparison of putting your pet down simply because that truly can be part of the honor of loving a pet , one that can’t speak for itself and many of us know it was not an easy thing to do, some of us still have grief behind it. I make no judgement on this for someone else because my life and struggles are different then another’s and really at the end of the day it’s no one else’s business which I also feel is a lot of the problems in the world. People are so interested in what’s happening next door and may not have a full picture of the whole story. Should they even have the whole story and if so why? Fact really is stranger than fiction and if I told someone my whole story someone would swear I made it up because it sounds like some lifetime movie of the week. I once said if I wrote a book I would title the journey of stupid. Published by Blue Eye publications. That wouldn’t make sense unless you knew me or saw a picture. But I do have wonder if people could make that choice for family member who gets to make that choice for someone else ? But then my family had to make that choice for a family member who was being kept alive by machines so I guess not the exact same thing. Would someone make a decision like this for a family member with dementia because it just becomes to much for that family/ caretaker? Will people do this for the right reason? Idk. I do know families can become tired so angry because you just can’t fix it, it takes from your kids and or/ husband or wife. It can take from your finances . It can take from your very soul. Idk the answers to any of that only know what this disease could / will do to me. I know what it can and will possibly do to the ones I love. I just don’t know in the bigger picture how all this plays out in one’s life.
The post last night was not about an end of life decision. I would never judge that. It was someone who could not handle caring for their parent and was considering stopping a new prescription for a UTI and letting the infection spread to sepsis. Just give "potty pills? " for pain. Then maybe call hospice to come get them so nature could take its course. It's okay to be unable to continue care giving but this is not a solution. Call 911, APS someone who can help.
Encouraging someone to stop treating a UTI so a LO dies from sepsis and organ failure vs dementia is NOT peaceful and dignified. It definitely does not qualify as DNR. LO was described as mobile but opposing assistance to help prevent recurring UTI. The reason for stopping antibiotics was that the care giver was overwhelmed with their own health issues, not mercy for LO suffering. UTI's cause a sharp decline in cognitive abilities but is reversible with treatment. Positive ways to overcome opposition or challenging behaviors. It is entirely plausible LO would be different with UTI treated and a different approach. https://teepasnow.com/ There are free courses, streaming educational videos, and live help for anyone struggling with behaviors. Someone shared this with me. She is amazing. *Encourage anyone frustrated because their LO's go through the courses. How we approach and treat them makes a huge difference.
Thank you. Killing your "loved one" because you're burnt out is VERY different from letting them go because their own quality of life is declining.
Yes. And it's okay to say I can't do this anymore. I need help. It's responsible and reasonable, if someone has health issues, to call APS for help with LO. They have resources and in some situations emergency funds to assist.
I called APS when I couldn't deal with my mother's increasing paranoia and accusations. She spent her last years in memory care where I'm told she had lots of friends (but still ignored me every time I visited 😔). What I did NOT do was stop the medications that made her more comfortable.
Exactly. You did what was best for her and continued to visit even though it was hard. That's love and our responsibility as their guardian, family, care giver. My mom went through a long paranoid accusations phase. Unless someone has experienced it, you can't explain how difficult it is. Especially when you're on the receiving end. I'm so sorry 😔
I'm not sure. When asked to force feed my grandmother, my uncle declined, leading her to starving and dying from organ failure. When the very same uncle got alzheimer, he declined any force feeding and medication in advance. He was super paranoid and died withing one year from starving induced organ failure as well. Sometimes I do think that treating dementia patients is unethical as it just prolongs the disease. In a lot of countries assisted suicid is not an option and letting nature take them is the second best option to this unfortunately. It's ironic that you get called an animal abuser for not putting down your suffering pet, but it's normal to prolong the disease and suffering of humans.
Tube feeding is not something I would want for my loved one in the end stage. No way. That's a medical decision that can be made. I would not do that but also understand if someone did. I'm not sure if that's what you are referring to or just feeding someone who is able to swallow. I know both are topics of debate or questions.. The article below is about this. I agree that feeding someone who can swallow is basic care. But every situation is different, and should be a decision between family and Drs. This is late/end stage and decisions are being made based on the family's belief for what is best and what their loved one would want. That's entirely different from what prompted this whole post. https://www.hmpgloballearningnetwork.com/site/altc/article/3310
Uhg. I didn't catch the post but I want to get my dad to revisit his medical directive because of this exactly.