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Comment by geocrasher | Hacker News Reader

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.

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> 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".

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.

> 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.

Medicaid

Do you think most citizens pay in that much tax in their lifetime? How do you imagine this is adding up?

It doesn’t, which is why benefits are the biggest portion of US government spending.

https://www.thebalance.com/u-s-federal-budget-breakdown-3305...

>Mandatory expenditures, such as Social Security, Medicare, and the Supplemental Nutrition Assistance Program account for about 60% of the budget.

Technically Medicaid is from state governments or at least some portion of it, but it probably looks the same there.

This is why people call it a pyramid scheme.

The breakdown of single-earner families means kids and seniors get institutional care. And there isn’t enough money to socialize care as good as your family.

> The breakdown of single-earner families means kids and seniors get institutional care. And there isn’t enough money to socialize care as good as your family.

I guess we'd save a lot of money if we just had family structures more like people in asian countries.

wouldn't that lead to a lot of job losses in the nursing homes / facilities sectors?

Yeah. It isn't worth people making bad decisions to support other people's jobs. A key part of what makes a job a job is the worker, in some sense, creating more value for others than the personal cost to themselves.

If people are better off doing something for themselves, then it is a net win if they do. The nursing home employees can go and do something else.

> what makes a job a job is the worker, in some sense, creating more value for others than the personal cost to themselves.

"in some sense" really means in a collective sense. Not everyone falls into the safety net, but those that do certainly could exceed, in expenses, what they paid into the system. That's OK and totally fair.

If we spent the same money supporting family educational choice and preferred elderly in-home care, I suspect we'd be ahead of where we are.

Obviously, some people will need school and care that family can't give, and I'm not against paying for it.

But these policies encourage assets to be wasted so that you can get in the safety net.

> Do you think most citizens pay in that much tax in their lifetime?

For a fraction of them to need long-term care at some level, mostly not the nursing level, for on average around 2-3 years? Yes, easily.

Only a small percentage of people end up in a skilled nursing facility, of these the typical stay is almost always less than 2 years.

The numbers add up in bulk. It's a safety net that not everyone falls into.

Which will pay for 2/3rds of it, and cause your social security payment to drop substantially

> 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.

A substantial majority of nursing home patients in the US are paid for by Medicaid; people who have assets often shed them to qualify for Medicaid if they need nursing care.

> People live in those places for 20 years sometimes

IIRC, the average length of long-term care stay is a more like 2 years, with a fairly small fraction over 5 years. And I would think the longer stays tend to be skewed toward assisted living (which is significantly less expensive), not nursing homes.

I have seen financials for a number of nursing homes owned by friends. They get paid by Medicare for short term rehab in their facility and the rate is about $400/day. The majority of the people are long term on Medicaid and the reimbursement is between $120-200 per day depending on case difficulty. There are certain games they play to increase the reimbursement such as getting most of the patients diagnosed with depression. I have heard zingers such as “there is a very fine line between optimizing patient care and Medicaid fraud”. At Medicaid rates the only way it works is if the people providing the care make about $10/hr. All the good caregivers tend to work at the best run facilities, so quality tends to be bimodal.

I think most of us would legitimately meet the diagnostic criteria for clinical depression if we were trapped in one of those places.

There's levels of care. Skilled nursing is among the highest.

A nice assisted living facility might be $8,000 a month.

A retirement community will be less yet.

Medicaid pays for it if you can't afford it. You must spend down your assets first, before medicaid will pay.

You are confusing Medicare with Medicaid.

you have to spend down for Medicaid/Medical -- but Medicare does not look at your assets. Medicare will only cover short term skilled nursing after a hospitalization. Medicaid beds exist for long term skilled nursing.

You added an extra 0, $10,000/month x 20 years = $2,400,000. Still a lot of money however.

Here in Germany such facilities will cost around 1500-3000 EUR per month. This is still way more money then most people can stem, so they pay this typically with a combination of

* pension and social security (nursing case security) * income of the children * sale of real estate and other property of the invalid person

Yes, nursing facilities are damned expansive. But 10,000 USD/month, that's something almost nobody would be able to pay here.

> That's $24,000,000. It just doesn't add up, dude.

You've got an extra 10x in there. 20 years * 12 months * $10000 = $2.4 million

In Poland, the rule is that basically if you and sibilings can afford to pay for the nursing home of your parent, there is no state assistance. The state only kicks in if the family is too poor to cover the costs. The rationale behind it being probably that caring for parents is the responsibility of family, not state.

Does the state expect children who have emigrated to also contribute toward those costs? I know many younger Poles have moved to other EU countries for better job opportunities.

> Not sure what you mean by this

My grandmother was in good health but my mother didn't want to assist her (Medicare-provided) caretaker anymore and wanted her assets. She and my stepfather manufactured a scenario in which she took a fall, then stuck her in a nursing home and she died within a year. My mother knew the rules and got what she wanted without any repercussions (beyond losing contact with her only son).

... so what's the point? That it's possible to find horror stories everywhere?

The vast majority of people admitted to nursing homes have loving decent families.

I have seen other situations where the family tries to take care of someone that really needs to be in a nursing home and ends up neglecting them. I think neglect is far more common-- and more indicative of greed.

Your response was dismissive of the possibility that families could throw a family member into a nursing home to raid their savings, etc. I'm telling you that this happens and providing a real-world example from my own life, just like you did.

The vast majority of people do NOT have loving, decent families. You are lucky to have that world view but you should consider the possibility that it is quite flawed.

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.

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.

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.

Totally believe you. You are doing far more than most anyone would be able to do.

Yes. It is the most difficult thing.

There are no Hollywood movies about this, for a reason.

I so sincerely appreciate your reply. I want to assure you that your experience is not what I was referring to. I would totally back you up in this respect. I was referring only to those who are greedy enough to strip their parent of their assets and put them in a home. See the "manufactured scenario" comment shortly after mine.

Your situation sounds 100% warranted. Again, please do not take my comments as being directed toward anyone in your situation. They most definitely were not.

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.

that's also happening

did you consider any other reasons why people might be in nursing homes?

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.

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!

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.

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."

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