When my wife (46) and I found out that she was terminally ill, I promised her that I'd never let her end up in a Nursing/Hospice home. She'll get care at home. When the time comes, she'll die at home, too.
Myself, our adult daughter, and close friends have all banded together to make sure that she never ends up in a home. We reaffirmed this after Covid hit. If she goes into a hospice care facility, I'll never see her again, and she'll suffer even more from lack of care.
I've also seen healthy but less able older folks put in homes so that their kids could collect their inheritances and sell off everything else. In one case, the older woman was forced out of her home into a nursing home. Her quality of life was erased. She went from thriving at at home to dead in just a few months.
These greedy nursing homes are profiting from greedy adults who don't care about their parents and from a system that makes money by warehousing people.
> also seen healthy but less able older folks put in homes so that their kids could collect their inheritances and sell off everything else...
Not sure what you mean by this, but putting someone in a skilled nursing facility costs about 10,000/month nominally. The "Deficit Reduction Act" of 2005 (thanks Bush), requires a 5 year look-back period for transactions to family members. Meaning that if a resident spends down all their money and needs to go on medical assistance, the family members are on the hook to pay the equivalent of whatever property or money they received from the parent going back to 5 years before the application of medical assistance (yes, they look at taxes and all bank account records). This stuff is effectively a financial trap for middle class families that has caused immeasurable grief and hardship. Consulting with an lawyer who specializes in elder law is super important.
As for nursing homes, they are sometimes the only option left. It's heartbreaking to put someone in a nursing home. I have done it but it was absolutely the right thing to do for my family. Everyone's situation is different, every nursing home is different. While I am sure that there is no shortage of greedy people, it's unfair to suggest that every person is equipped to give up their employment and take on 24/7/365 nursing care for a loved one and that not doing so is somehow "greedy".
I'm probably similar in age to you and am so sorry to hear what you are going through.
Last year, my single mother's health transitioned from self-sufficient, but secretly hiding chronic problems, to completely unable to care for herself in the course of a day (she bore some responsibility for this, it was not completely an accident). I let the US health care system walk us into a nursing home situation. Some of the health care workers there went to the wall to do what they could, some had no business being health care providers.
I'll never forgive myself for the how it turned out. I don't think I would have done anything substantially different. She did not go gently, it was unpleasant at times and she fought us more than she fought to get better. She lived for 6 months in the nursing home. Maybe I could have stretched it out a few years if I had quit my job, moved into her home and taken care of her myself, but she never would have been self sufficient again. I'm pretty sure I would not have "made it" though that experience though, not sure how else to say it.
I would absolutely personally take care of my wife in our home if she fell ill, and I'm saying that knowing a lot more about the end of life than I used to, how difficult and long it can be. I do not want my children to do this for me.
My condolences to both of you for the years you expected to spend with one another. What world-rocking news for anyone to get, let alone at the age of 46.
As someone who has been through an above-average amount of loss, I want to applaud and encourage the courageous, head-on manner in which you are approaching what is to come. It will pay off immensely down the road. My best to you, your wife and daughter.
Sorry about your wife. It sucks to go through with that. Let me give you the other side of the story.
My father is slowly succumbing due to frontal-temporal dementia. In the span of 10 years he's gone from a social, independent man to a an extremely mentally challenged man with cognitive capacity of a 1 year old child. He is prone to ever increasing psychotic fits of violence and actual epileptic fits. Medication helps but they bring their own challenging behaviors. His body is still physically strong. He can still run if he so pleases. He has no problems getting into bed and standing but he needs help 24/7 with every single daily task. He cannot use the bathroom well so several times a day there is pee and poo to clean either from a diaper or the floor. Giving him a bath or shower is a delicate dance that 9/10 times is no problem but once in a while he can come out swinging. He has physically struck in the face, bit, headbutted, scratched and kicked all of us during these episodes.
My mom alone cannot deal with him. I, have to sometimes physically restrain him using quite a bit of my strength, in a way that doesn't hurt him. I try to read as much as I can about how to approach him as a patient and learn what triggers him, what scares him, how to calm and distract as an attempt to de-escalate these things. There were times when violent events happened multiple times a day, every day for weeks regardless of what the dosages of his meds were. He is also prone to insomnia and sometimes wakes up at 2-3am and refuses to go to bed disrupting my mother and I's sleep multiple times a week.
On top of that, he is completely vulnerable and helpless just like a 1 year old child. It's heartbreaking to have to deal with him when he gets violent. When he gets a full seizure and falls is always a traumatic thing for us. After talks with his neurologist, psychologist etc we put him in a care home.
It's callous to say, but honestly having him at home was simply not worth the cost to the entire rest of the family. As cold as it sounds, I stand by our decision to get him out of our daily lives. Mine and my mom's mental and physical health has taken a huge in the last 5 years. My career has essentially stopped since our whole day pretty much revolved around his care.
Your comment comes off as a bit too one-sided IMO. I know when my mom and I were at our wits end, she on the verge of a mental breakdown, I watching her slowly unwind, felt like a terrible person for even considering putting my father in a care home when I read comments like yours. My story is neither extreme nor unique. Having reached out to other people caring for dementia patients, caretaker fatigue is a real thing. Dealing with violence is common.
Not everyone who considers putting a loved one in a care home is a terrible person.
I have some experience with this through family and friends.
It's easy to make moral proclamations before spending literally decades attending to somebody with dementia/vegetation, or other chronic conditions. Wasting your own life on somebody who isn't all there is not a great trade-off if there's other options.
(My friend inherited a $2 million house for taking care of his gravely ill elderly relative, but that cost him 20 years of his life and meant he couldn't have a career, family or life outside the house. So a double tragedy.)
Having said that, there are reasons to be concerned about US nursing homes ...
US nursing homes are incentivized on many levels to sedate their normally active patients:
1) easier to control patients with less staff
2) paid for administering the sedative (daily or more frequently)
3) paid for the sedative.
So care bills can be inflated with no benefit to the patient paying for it.
The other day I heard a story about a man who decided to kill his elderly father as the old man was too weak for productive work and the son considered him to be a burden on himself and his own kids. He built a large box out of wood. The box had wheels and door with a padlock on it. He shoved his father inside and locked him up. He wheeled the box to the edge of a cliff where he intended to toss the box on to the rocks a hundred meters below. As he was about to send it over the edge, his old man piped up from inside.
"You know you can go ahead and toss me off this cliff, but you should really keep the box. Your kids may have need of it when you get to be old like me."
My grandfather died in one of these facilities earlier this year from COVID. My great grandmother (his mother-in-law) died of a kidney infection in one about 15 years ago.
He had a heart attack in 2019 that crippled him, so he was in a physical rehabilitation facility because he could barely move on his own. He was making progress right up until the pandemic started. No visitation, and then the staff neglected him, which resulted in him developing pneumonia from laying in bed so much. He recovered somewhat, but then the pandemic hit the facility. He died a few weeks later.
I'll miss the time that stubborn man and I spent together. Rest in peace Pépère.
Hopefully by the time my parents are unable to care for themselves I'll be financially well enough off to make sure they never end up somewhere like this unless I truly can't provide the care they need.
Timely. In Canada today, the leader of the federal opposition party talked about the possibility of ending for-profit care homes nationally[1][2] and some provincial parties are very bullish on the idea.[3]
There are some good communities/homes for the elderly. Here's a great example (note these are pretty expensive): https://www.humangood.org/
I'm super grateful my grandmother was able to move to one of these communities while she was still on her feet and doing well. She started in a standalone house that she lived in by herself for about 10 years. With each subsequent step of her eventual decline, there was a smooth transition to a setup that was comfortable to her, and they took excellent care of her until she passed away.
On the upside, modern tech is a potential antidote to this. Some elderly are able to keep their freedom and the dignity and quality of life that go with it by using tech to stay connected, provide reminders and alarms and so forth to mitigate some of the issues that cause us to think they would be better off with supervision in a nursing home.
If this concerns you and you are a programmer or similar, you may be able to contribute to such solutions.
>Some elderly are able to keep their freedom and the dignity and quality of life that go with it by using tech to stay connected, provide reminders and alarms and so forth to mitigate some of the issues that cause us to think they would be better off with supervision in a nursing home.
Yeah. My 83 year old Mom with multiple issues views those tools as something only an old lady needs, and so rejects them. She can use Facebook with the same level of skill as it takes to make and receive the phone calls that the social internet supplanted.
Right now, "elderly" is largely people who were born before most people owned televisions, and technological solutions aren't always greeted with a "yay, more!" attitude. I'm sure a lot of prewar and boomer people stopped wanting to learn yet another piece of "modern tech" somewhere between TiVo and smart phones.
I remember watching a 20/20 Barbara Walters special years ago on the poor conditions of nursing homes.. fast forward to 2020... My former colleague and I built a QR app-based check-in system for nursing & assisted living - home caregivers to ensure they physically check on each resident as required. I was disheartened & dismayed most facilities just want to turn a blind-eye on the under-staffing issues of their facilities and could care less about improvement...There has to be market-demand to demand change and transparency! I'll keep pushing for change. That 20/20 special motivated me.
I don't work in a long-term care facility (I do acute geriatric psychiatric care), but I do work next door to one. We're non-profit so we don't exactly fit the mold, but understaffing isn't something that we are aiming for. We're offering incredible hiring bonuses, reaching out on every single avenue. Our problem is retention - we can get a few people hired, but maybe 1/5 CNAs stay, and 1/4 of the nurses. The long term care center probably has slightly better ratios, but most people don't have the ability to compartmentalize or the resiliency to last in the chronically understaffed units. You end up doing the work of 3 people with people who at best are demanding and at worst are physically attacking you and others.
Additionally, even for a CNA, training takes months and months. We get them out on the floor as soon as possible now, which isn't helping with out retention, but reflects the reality that our residents need care. Most of us are pulling 80+ hour weeks just to meet the federally mandated minimum staffing for how many residents we have at a given moment.
Of course to the extent that this is true, it is very sad. The plight of the elderly is so tough, it is the reason I volunteered at old folks homes in college.
But I don’t find this article very credible. It lacks objectivity and first hand sources. We must demand real journalism and acknowledge that just because a story is compelling doesn’t mean it is news.
We forced every adult into being a single atomic worker by completely eliminating jobs and benefits that enable single earners to care for their entire family (through the "unpaid" domestic work of the wife). Then, when we need to actually care for our families, we outsource that to the private sector, so that other atomic worker units can do the job for us. We have to do this, because nobody has time to care for our parents; we all have to work!
What did we get for doing this? What life improvements were gained?
The collective grief of the millions of people who have died alone is not worth any of this.
In the golden olden days in which you allude, no one was paid to take care of children and parents. It's an argument to say we should subsidize those that care for their own parents and children (and there are numerous government programs and tax breaks that already do), but you are undercutting your thesis with this bizarre assertion.
Many old people never had kids, and don't have any family. They need paid workers to take care of them. Many readers of this comment are perhaps planning on not having kids, or even not getting married. Just imagine yourselves in 40 to 60 years - this will be you!
My condolences to both of you for the years you expected to spend with one another. What world-rocking news for anyone to get, let alone at the age of 46.
As someone who has been through an above-average amount of loss, I want to applaud and encourage the courageous, head-on manner in which you are approaching what is to come. It will pay off immensely down the road. My best to you, your wife and daughter.
I'm probably in the minority here but I often think about preventative care like exercise and eating healthy now as insurance against a future where I'd be stuck in a nursing home in my final years.
> exercise and eating healthy now as insurance against a future where I'd be stuck in a nursing home in my final years.
We would all like to think that "the end" would come at a ripe old age with a peaceful death in one's sleep. Sadly that's not usually the case. People who live a long time can expect a cascade of long-lasting chronic health problems leading to their death.
If you're going to focus on diet and exercise do it for your quality of life NOW and not for the distant, unpredictable future.
There's something to be said for dropping dead at around 80 of a massive heart attack.
Getting really old kinda sucks, healthy people die slowly, dying of old age takes a long time, and I wouldn't be surprised if 99%+ of centenarians are in nursing homes for their nth decade. So...y'know...good luck with your plan.
[+] [-] geocrasher|5 years ago|reply
Myself, our adult daughter, and close friends have all banded together to make sure that she never ends up in a home. We reaffirmed this after Covid hit. If she goes into a hospice care facility, I'll never see her again, and she'll suffer even more from lack of care.
I've also seen healthy but less able older folks put in homes so that their kids could collect their inheritances and sell off everything else. In one case, the older woman was forced out of her home into a nursing home. Her quality of life was erased. She went from thriving at at home to dead in just a few months.
These greedy nursing homes are profiting from greedy adults who don't care about their parents and from a system that makes money by warehousing people.
[+] [-] crispyambulance|5 years ago|reply
Not sure what you mean by this, but putting someone in a skilled nursing facility costs about 10,000/month nominally. The "Deficit Reduction Act" of 2005 (thanks Bush), requires a 5 year look-back period for transactions to family members. Meaning that if a resident spends down all their money and needs to go on medical assistance, the family members are on the hook to pay the equivalent of whatever property or money they received from the parent going back to 5 years before the application of medical assistance (yes, they look at taxes and all bank account records). This stuff is effectively a financial trap for middle class families that has caused immeasurable grief and hardship. Consulting with an lawyer who specializes in elder law is super important.
As for nursing homes, they are sometimes the only option left. It's heartbreaking to put someone in a nursing home. I have done it but it was absolutely the right thing to do for my family. Everyone's situation is different, every nursing home is different. While I am sure that there is no shortage of greedy people, it's unfair to suggest that every person is equipped to give up their employment and take on 24/7/365 nursing care for a loved one and that not doing so is somehow "greedy".
[+] [-] sector777|5 years ago|reply
Last year, my single mother's health transitioned from self-sufficient, but secretly hiding chronic problems, to completely unable to care for herself in the course of a day (she bore some responsibility for this, it was not completely an accident). I let the US health care system walk us into a nursing home situation. Some of the health care workers there went to the wall to do what they could, some had no business being health care providers.
I'll never forgive myself for the how it turned out. I don't think I would have done anything substantially different. She did not go gently, it was unpleasant at times and she fought us more than she fought to get better. She lived for 6 months in the nursing home. Maybe I could have stretched it out a few years if I had quit my job, moved into her home and taken care of her myself, but she never would have been self sufficient again. I'm pretty sure I would not have "made it" though that experience though, not sure how else to say it.
I would absolutely personally take care of my wife in our home if she fell ill, and I'm saying that knowing a lot more about the end of life than I used to, how difficult and long it can be. I do not want my children to do this for me.
[+] [-] uhhyeahdude|5 years ago|reply
As someone who has been through an above-average amount of loss, I want to applaud and encourage the courageous, head-on manner in which you are approaching what is to come. It will pay off immensely down the road. My best to you, your wife and daughter.
[+] [-] foo_barrio|5 years ago|reply
My father is slowly succumbing due to frontal-temporal dementia. In the span of 10 years he's gone from a social, independent man to a an extremely mentally challenged man with cognitive capacity of a 1 year old child. He is prone to ever increasing psychotic fits of violence and actual epileptic fits. Medication helps but they bring their own challenging behaviors. His body is still physically strong. He can still run if he so pleases. He has no problems getting into bed and standing but he needs help 24/7 with every single daily task. He cannot use the bathroom well so several times a day there is pee and poo to clean either from a diaper or the floor. Giving him a bath or shower is a delicate dance that 9/10 times is no problem but once in a while he can come out swinging. He has physically struck in the face, bit, headbutted, scratched and kicked all of us during these episodes.
My mom alone cannot deal with him. I, have to sometimes physically restrain him using quite a bit of my strength, in a way that doesn't hurt him. I try to read as much as I can about how to approach him as a patient and learn what triggers him, what scares him, how to calm and distract as an attempt to de-escalate these things. There were times when violent events happened multiple times a day, every day for weeks regardless of what the dosages of his meds were. He is also prone to insomnia and sometimes wakes up at 2-3am and refuses to go to bed disrupting my mother and I's sleep multiple times a week.
On top of that, he is completely vulnerable and helpless just like a 1 year old child. It's heartbreaking to have to deal with him when he gets violent. When he gets a full seizure and falls is always a traumatic thing for us. After talks with his neurologist, psychologist etc we put him in a care home.
It's callous to say, but honestly having him at home was simply not worth the cost to the entire rest of the family. As cold as it sounds, I stand by our decision to get him out of our daily lives. Mine and my mom's mental and physical health has taken a huge in the last 5 years. My career has essentially stopped since our whole day pretty much revolved around his care.
Your comment comes off as a bit too one-sided IMO. I know when my mom and I were at our wits end, she on the verge of a mental breakdown, I watching her slowly unwind, felt like a terrible person for even considering putting my father in a care home when I read comments like yours. My story is neither extreme nor unique. Having reached out to other people caring for dementia patients, caretaker fatigue is a real thing. Dealing with violence is common.
Not everyone who considers putting a loved one in a care home is a terrible person.
[+] [-] galfarragem|5 years ago|reply
What about that 100% dependent elders that are not terminally ill?
What about single childs that on their late 60s that have to take care of two persons in their 90s?
What about families that don't live from tech money and can't afford to hire a personal caretaker?
Who will caretake the caretaker parents?
(...)
This is still an unadressed problem disguised with cheap morals. Then, when a radical answer appears (euthanasia), everybody pretends not to see.
[+] [-] unknown|5 years ago|reply
[deleted]
[+] [-] vmception|5 years ago|reply
did you consider any other reasons why people might be in nursing homes?
[+] [-] redis_mlc|5 years ago|reply
It's easy to make moral proclamations before spending literally decades attending to somebody with dementia/vegetation, or other chronic conditions. Wasting your own life on somebody who isn't all there is not a great trade-off if there's other options.
(My friend inherited a $2 million house for taking care of his gravely ill elderly relative, but that cost him 20 years of his life and meant he couldn't have a career, family or life outside the house. So a double tragedy.)
Having said that, there are reasons to be concerned about US nursing homes ...
US nursing homes are incentivized on many levels to sedate their normally active patients:
1) easier to control patients with less staff
2) paid for administering the sedative (daily or more frequently)
3) paid for the sedative.
So care bills can be inflated with no benefit to the patient paying for it.
[+] [-] jacobwilliamroy|5 years ago|reply
"You know you can go ahead and toss me off this cliff, but you should really keep the box. Your kids may have need of it when you get to be old like me."
[+] [-] Teknoman117|5 years ago|reply
He had a heart attack in 2019 that crippled him, so he was in a physical rehabilitation facility because he could barely move on his own. He was making progress right up until the pandemic started. No visitation, and then the staff neglected him, which resulted in him developing pneumonia from laying in bed so much. He recovered somewhat, but then the pandemic hit the facility. He died a few weeks later.
I'll miss the time that stubborn man and I spent together. Rest in peace Pépère.
Hopefully by the time my parents are unable to care for themselves I'll be financially well enough off to make sure they never end up somewhere like this unless I truly can't provide the care they need.
[+] [-] emptybits|5 years ago|reply
[1] https://toronto.citynews.ca/video/2020/10/29/ndp-calls-for-f...
[2] https://ipolitics.ca/2020/10/29/singh-joins-ontario-counterp...
[3] https://www.cbc.ca/news/canada/toronto/ontario-ndp-plan-chan...
[+] [-] TimTheTinker|5 years ago|reply
I'm super grateful my grandmother was able to move to one of these communities while she was still on her feet and doing well. She started in a standalone house that she lived in by herself for about 10 years. With each subsequent step of her eventual decline, there was a smooth transition to a setup that was comfortable to her, and they took excellent care of her until she passed away.
[+] [-] DoreenMichele|5 years ago|reply
If this concerns you and you are a programmer or similar, you may be able to contribute to such solutions.
[+] [-] rhizome|5 years ago|reply
Yeah. My 83 year old Mom with multiple issues views those tools as something only an old lady needs, and so rejects them. She can use Facebook with the same level of skill as it takes to make and receive the phone calls that the social internet supplanted.
Right now, "elderly" is largely people who were born before most people owned televisions, and technological solutions aren't always greeted with a "yay, more!" attitude. I'm sure a lot of prewar and boomer people stopped wanting to learn yet another piece of "modern tech" somewhere between TiVo and smart phones.
[+] [-] alf365|5 years ago|reply
[+] [-] SargeZT|5 years ago|reply
Additionally, even for a CNA, training takes months and months. We get them out on the floor as soon as possible now, which isn't helping with out retention, but reflects the reality that our residents need care. Most of us are pulling 80+ hour weeks just to meet the federally mandated minimum staffing for how many residents we have at a given moment.
[+] [-] unknown|5 years ago|reply
[deleted]
[+] [-] Hnrobert42|5 years ago|reply
But I don’t find this article very credible. It lacks objectivity and first hand sources. We must demand real journalism and acknowledge that just because a story is compelling doesn’t mean it is news.
[+] [-] rland|5 years ago|reply
We forced every adult into being a single atomic worker by completely eliminating jobs and benefits that enable single earners to care for their entire family (through the "unpaid" domestic work of the wife). Then, when we need to actually care for our families, we outsource that to the private sector, so that other atomic worker units can do the job for us. We have to do this, because nobody has time to care for our parents; we all have to work!
What did we get for doing this? What life improvements were gained?
The collective grief of the millions of people who have died alone is not worth any of this.
[+] [-] bluedino|5 years ago|reply
[+] [-] unknown|5 years ago|reply
[deleted]
[+] [-] lotsofpulp|5 years ago|reply
[+] [-] seibelj|5 years ago|reply
Many old people never had kids, and don't have any family. They need paid workers to take care of them. Many readers of this comment are perhaps planning on not having kids, or even not getting married. Just imagine yourselves in 40 to 60 years - this will be you!
[+] [-] uhhyeahdude|5 years ago|reply
As someone who has been through an above-average amount of loss, I want to applaud and encourage the courageous, head-on manner in which you are approaching what is to come. It will pay off immensely down the road. My best to you, your wife and daughter.
[+] [-] unknown|5 years ago|reply
[deleted]
[+] [-] unknown|5 years ago|reply
[deleted]
[+] [-] throwaway-sf|5 years ago|reply
[+] [-] crispyambulance|5 years ago|reply
We would all like to think that "the end" would come at a ripe old age with a peaceful death in one's sleep. Sadly that's not usually the case. People who live a long time can expect a cascade of long-lasting chronic health problems leading to their death.
If you're going to focus on diet and exercise do it for your quality of life NOW and not for the distant, unpredictable future.
There's something to be said for dropping dead at around 80 of a massive heart attack.
[+] [-] smabie|5 years ago|reply
Personally, dying at 70 seems about ideal to me. Of course maybe I'll change my mind if/once I reach 70.
[+] [-] rhizome|5 years ago|reply
[+] [-] polishdude20|5 years ago|reply