7 ms·

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 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.

vmception 6y ago
that's also happening did you consider any other reasons why people might be in nursing homes?
uhhyeahdude 6y ago
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.
redis_mlc 6y ago
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.
- foo_barrio 6y ago
  Unfortunately that incentive exists at home too. I, with my mom, were the primary caretakers of my father with dementia. Without any kind of sedation he was actually more mentally aware but also prone to violence, yelling, sprinting (if in the house easy to trip). On the sedative he was more manageable but also clumsier and more prone to slipping and falling. Overall I'd rather deal with that than having to be a referee between him and my mom!
  - redis_mlc 6y ago
    Note that you're talking about a reasonable medical use of sedatives that your own family decided upon. I was mainly talking about non-medical, billing-only use of sedatives decided by home administrators when the family is not around to make an informed decision. If you're not outraged, you should re-read the above paragraph again. That's been reported in local SV newspapers and online.
foo_barrio 6y ago
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.
crispyambulance 6y ago
> 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".
- eppp 6y ago
  We hired a great person to help take care of a loved one during the day but it was complete luck that that person was available. It was still awful and if he had become any harder to take care of, we would have had to put him in a nursing home. Its a no win option.
- chrisseaton 6y ago
  > putting someone in a skilled nursing facility costs about 10,000/month nominally Who on earth is able to afford this? Everywhere I look there are nursing homes full of ordinary people. I can't believe more than 0.1% of these people are literally able to afford $10,000/month. People live in those places for 20 years sometimes. That's $24,000,000. It just doesn't add up, dude. I think the actual cost is way, way, way less.
  - harryh 6y ago
deleted 6y ago
[deleted]
sector777 6y ago
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.
- DrAwdeOccarim 6y ago
  Thanks for writing this out, I follow what you're saying and I agree on all three points. That quitting your job to care for your mom's end of life would have been disastrous to your health and well being after she passed, that you will care for your spouse, and that you would want your children to not bear the burden of caring for you at your end of life the same way you saw what that burden would have entailed with your mom. These are all very reasonable positions and I commend you for saying them aloud. I think most people feel the same way but have a hard time articulating it without sounding callous.
jacobwilliamroy 6y ago
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."
galfarragem 6y ago
It's very easy to oversimplify this growing problem. If it was that simple most families would take care of their elders isn't it? 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.

vmception 6y ago

that's also happening did you consider any other reasons why people might be in nursing homes?

uhhyeahdude 6y ago

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.

redis_mlc 6y ago

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.

foo_barrio 6y ago
Unfortunately that incentive exists at home too. I, with my mom, were the primary caretakers of my father with dementia. Without any kind of sedation he was actually more mentally aware but also prone to violence, yelling, sprinting (if in the house easy to trip). On the sedative he was more manageable but also clumsier and more prone to slipping and falling. Overall I'd rather deal with that than having to be a referee between him and my mom!
- redis_mlc 6y ago
  Note that you're talking about a reasonable medical use of sedatives that your own family decided upon. I was mainly talking about non-medical, billing-only use of sedatives decided by home administrators when the family is not around to make an informed decision. If you're not outraged, you should re-read the above paragraph again. That's been reported in local SV newspapers and online.

foo_barrio 6y ago

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.

crispyambulance 6y ago

> 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".

eppp 6y ago
We hired a great person to help take care of a loved one during the day but it was complete luck that that person was available. It was still awful and if he had become any harder to take care of, we would have had to put him in a nursing home. Its a no win option.
chrisseaton 6y ago
> putting someone in a skilled nursing facility costs about 10,000/month nominally Who on earth is able to afford this? Everywhere I look there are nursing homes full of ordinary people. I can't believe more than 0.1% of these people are literally able to afford $10,000/month. People live in those places for 20 years sometimes. That's $24,000,000. It just doesn't add up, dude. I think the actual cost is way, way, way less.
- harryh 6y ago

deleted 6y ago

[deleted]

sector777 6y ago

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.

DrAwdeOccarim 6y ago
Thanks for writing this out, I follow what you're saying and I agree on all three points. That quitting your job to care for your mom's end of life would have been disastrous to your health and well being after she passed, that you will care for your spouse, and that you would want your children to not bear the burden of caring for you at your end of life the same way you saw what that burden would have entailed with your mom. These are all very reasonable positions and I commend you for saying them aloud. I think most people feel the same way but have a hard time articulating it without sounding callous.

jacobwilliamroy 6y ago

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."

galfarragem 6y ago

It's very easy to oversimplify this growing problem. If it was that simple most families would take care of their elders isn't it? 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.