dying at home is often unattainable
February 9, 2023 7:46 AM Subscribe
My grandmother died at home, just as she wanted. It cost $145,000 My grandmother died at home recently, surrounded by her family and loving caregivers with the support of a hospice team. It was exactly how she pictured the end of her life, and it cost our family $145,613.79.
Absolutely true. The system is broken. We all die in the end, and life is often pretty good even when you're old until you're really sick, so the people who say they will exit life before they have to go through this are fooling themselves.
I am lucky enough to have obtained long-term care insurance back before insurance companies realized it would bankrupt them and made it too hard to get, but even that's not a guarantee. I never ended up using it for my husband, who was diagnosed two years before he died but was really only in hospice for about a month at the end, so I managed to struggle through.
But I did give up my job to care for him a while after he was diagnosed, and the last month was pretty hellish on my own, even with the lovely hospice nurse and aide who came regularly. He ended up not being able to "die at home" in the last week because his pain management needs got too extreme, but did die in a hospice clinic where they installed a pump for the meds and he didn't have to have any interventions.
Medicare (and my supplemental insurance) is great at paying for hospice, but it doesn't pay for extra caregiving. If he had taken longer, I have no idea how I would have survived.
posted by Peach at 8:09 AM on February 9, 2023 [43 favorites]
I am lucky enough to have obtained long-term care insurance back before insurance companies realized it would bankrupt them and made it too hard to get, but even that's not a guarantee. I never ended up using it for my husband, who was diagnosed two years before he died but was really only in hospice for about a month at the end, so I managed to struggle through.
But I did give up my job to care for him a while after he was diagnosed, and the last month was pretty hellish on my own, even with the lovely hospice nurse and aide who came regularly. He ended up not being able to "die at home" in the last week because his pain management needs got too extreme, but did die in a hospice clinic where they installed a pump for the meds and he didn't have to have any interventions.
Medicare (and my supplemental insurance) is great at paying for hospice, but it doesn't pay for extra caregiving. If he had taken longer, I have no idea how I would have survived.
posted by Peach at 8:09 AM on February 9, 2023 [43 favorites]
My grandmother died in her sleep at age 82, from an unexpected stroke while she and my grandfather were at their winter rental in Arizona. One of the things that comforted my mother was the realization that "Mom always said she didn't want to ever be a burden on anyone at the end of her life...and she got that wish."
posted by EmpressCallipygos at 8:14 AM on February 9, 2023 [24 favorites]
posted by EmpressCallipygos at 8:14 AM on February 9, 2023 [24 favorites]
This is unconscionable. And that's on top of knowing that in order to qualify for Medicare in the first place, you have to first spend down all your money so you're going into the system without any safety net.
I do wish she hadn't included the $3200/month that she paid to rent her mother an apartment as part of the total. I understand why it was necessary in their particular situation, but I don't think it qualifies as part of her healthcare costs (and especially not as part of healthcare costs associated with dying at home). But that's quibbling. Having no place to go is real, and that's part of how the US system is irretrievably broken.
posted by Mchelly at 8:38 AM on February 9, 2023 [3 favorites]
I do wish she hadn't included the $3200/month that she paid to rent her mother an apartment as part of the total. I understand why it was necessary in their particular situation, but I don't think it qualifies as part of her healthcare costs (and especially not as part of healthcare costs associated with dying at home). But that's quibbling. Having no place to go is real, and that's part of how the US system is irretrievably broken.
posted by Mchelly at 8:38 AM on February 9, 2023 [3 favorites]
Private Equity Is Gobbling Up Hospice Chains And Getting Involved In The Business Of Dying
posted by lalochezia at 8:40 AM on February 9, 2023 [26 favorites]
posted by lalochezia at 8:40 AM on February 9, 2023 [26 favorites]
Relevant article. Interesting incidentally that people over 65 are experiencing the steepest rise in student debt because they’re taking on the debt of their kids and grandkids.
posted by Peach at 9:02 AM on February 9, 2023 [8 favorites]
posted by Peach at 9:02 AM on February 9, 2023 [8 favorites]
It’s Medicaid that requires spending down. Medicare as far as I know (and I have it) has no income requirement.
posted by Peach at 9:03 AM on February 9, 2023 [32 favorites]
posted by Peach at 9:03 AM on February 9, 2023 [32 favorites]
Why not include rent? If she had died in a hospital or hospice center, they charge insurance/Medicare for her room.
posted by muddgirl at 9:06 AM on February 9, 2023 [13 favorites]
posted by muddgirl at 9:06 AM on February 9, 2023 [13 favorites]
This is going to be a major problem going forward, first for those whose end of life care is suffering from lack of funds, being shuffled between caregivers, etc, but also for future generations since the generation that's about to die is the last one to amass a large amount of wealth. Normally that would be redistributed to the family as they die, but now all that life savings plus some more is going to go to private equity as late in life medical care and hospice drains their funds so their descendants never see it. It's just going to be gone from the general economy.
posted by mikesch at 9:06 AM on February 9, 2023 [68 favorites]
posted by mikesch at 9:06 AM on February 9, 2023 [68 favorites]
This gives me flashbacks to my mother finally agreeing to pull the plug on my dad because once he got kicked out of the rehab hospital ($200,000/month), it was up to us to pay $24,000 a month to keep him alive in a nursing home. The first month they asked for double that for setup costs....which is why she finally let him die that month.
posted by jenfullmoon at 9:11 AM on February 9, 2023 [18 favorites]
posted by jenfullmoon at 9:11 AM on February 9, 2023 [18 favorites]
My mom had a slow rolling version of dementia and paranoia was one of the first symptoms, so we weren't able to convince her to get her affairs in order before she needed institutional care. At the time, there was a 5 year lookback at anything we wanted to try ( I was going to buy her house and give her tenancy at will), but she refused, and the time window closed. Her benefits fell short 3K a month, and the State started paying attention once her savings were depleted. Upon her death we got a letter stating we owed the state 212 K, so we had to sell the place. Also, I was NOT impressed with " A Place for Mom"...I got a used car dealer vibe, and told them to pack sand !
posted by lobstah at 9:20 AM on February 9, 2023 [9 favorites]
posted by lobstah at 9:20 AM on February 9, 2023 [9 favorites]
We did a Transfer On Death Deed for my Mom in 2021 to prevent CA from forcing us to sell the house
Medicare handled her in-home hospice care fine (free hospital equipment and 1 to 3 nursing /aide visits per week) so the TOD was unnecessary.
Side effect was it caused a 50% rise in the prop 13 valuation since we deeded the home to both siblings instead of one, and no Prop 13 protection for sibling transfers
Oh well
posted by Heywood Mogroot III at 9:46 AM on February 9, 2023 [4 favorites]
Medicare handled her in-home hospice care fine (free hospital equipment and 1 to 3 nursing /aide visits per week) so the TOD was unnecessary.
Side effect was it caused a 50% rise in the prop 13 valuation since we deeded the home to both siblings instead of one, and no Prop 13 protection for sibling transfers
Oh well
posted by Heywood Mogroot III at 9:46 AM on February 9, 2023 [4 favorites]
My mother in law passed away last year - quickly. It was a bewilderingly swift move from them detecting cancer to her being gone.
And the real kick in the metaphorical nuts was that both my wife and I were grateful for her swift passing. Not for the money aspect, but for the pain aspect (and ironically/awfully her dementia ended up being a partial blessing as she didn't have the cancer at top of mind). The amount of guilt for that feeling of relief has come and gone in waves and that's fun.
If we had to worry about financial strain on top of it probably would have us both chewing wads of Xanax.
The fact that the system adds extra cruelty to the already shitastical mix is just.. I don't know how to adequately communicate my disgust at it.
posted by drewbage1847 at 9:46 AM on February 9, 2023 [27 favorites]
And the real kick in the metaphorical nuts was that both my wife and I were grateful for her swift passing. Not for the money aspect, but for the pain aspect (and ironically/awfully her dementia ended up being a partial blessing as she didn't have the cancer at top of mind). The amount of guilt for that feeling of relief has come and gone in waves and that's fun.
If we had to worry about financial strain on top of it probably would have us both chewing wads of Xanax.
The fact that the system adds extra cruelty to the already shitastical mix is just.. I don't know how to adequately communicate my disgust at it.
posted by drewbage1847 at 9:46 AM on February 9, 2023 [27 favorites]
It is weird that the one thing that will happen to all of us, and most of us DO NOT WANT, is so poorly handled and fucked up.
posted by Windopaene at 10:07 AM on February 9, 2023 [13 favorites]
posted by Windopaene at 10:07 AM on February 9, 2023 [13 favorites]
The hospital dumped my father to rehab, rehab figured out in about 10 minutes there was nothing they could fix and booted him to a nursing home, and a few weeks into that when he had a new set of imaging they sent him home to die because I guess he didn't have complex enough needs to justify staying there.
My elderly mother got one hour a week of help caring for a bedridden man twice her size in a hospital bed in the living room. Two 30-minute visits, one from a CNA to help bathe him and change the sheets (once! a! week!), one from an NP to assess meds.
My grandmother actually did get to go to the hospice facility of just about anybody's dreams. It was lovely and amazing. They had to boot her for not dying fast enough, and she went in a crappy nursing home with my mother caring for her there 24/7.
I've said it elsewhere and I'll say it here: my final wish is to die in the comfort of my Senator's front yard, if y'all can't figure out how to get me onto their desk. (I mean, this is MetaFilter, surely someone can figure out at least how to put me in the back seat of their car.)
posted by Lyn Never at 10:30 AM on February 9, 2023 [94 favorites]
My elderly mother got one hour a week of help caring for a bedridden man twice her size in a hospital bed in the living room. Two 30-minute visits, one from a CNA to help bathe him and change the sheets (once! a! week!), one from an NP to assess meds.
My grandmother actually did get to go to the hospice facility of just about anybody's dreams. It was lovely and amazing. They had to boot her for not dying fast enough, and she went in a crappy nursing home with my mother caring for her there 24/7.
I've said it elsewhere and I'll say it here: my final wish is to die in the comfort of my Senator's front yard, if y'all can't figure out how to get me onto their desk. (I mean, this is MetaFilter, surely someone can figure out at least how to put me in the back seat of their car.)
posted by Lyn Never at 10:30 AM on February 9, 2023 [94 favorites]
My dad was fortunate enough to have hospice at home. It was a good death. IDK what the deal is or if my dad's insurance paid for it or how mom got it handled (I should have asked, though she didn't sound like it caused a hardship even though they didn't have any real money/savings).
My roomies BFF died of cancer and she went up to be with her during the pandemic. The friend had low income housing, and the "hospice" were awful. Only came around maybe once in a while. My roomie had to call 911 to help after she couldn't lift up her friend after she fell off the bed.
My roommate has trauma around this. She's disabled herself and eventually had support from other family who was able to make it after the first couple days. But she thought hospice would be more available. Absolutely horrible. Hopefully they didn't charge anything because they did jack shit from what I hear. It was all up to the roomie and the one sister.
posted by symbioid at 10:34 AM on February 9, 2023
My roomies BFF died of cancer and she went up to be with her during the pandemic. The friend had low income housing, and the "hospice" were awful. Only came around maybe once in a while. My roomie had to call 911 to help after she couldn't lift up her friend after she fell off the bed.
My roommate has trauma around this. She's disabled herself and eventually had support from other family who was able to make it after the first couple days. But she thought hospice would be more available. Absolutely horrible. Hopefully they didn't charge anything because they did jack shit from what I hear. It was all up to the roomie and the one sister.
posted by symbioid at 10:34 AM on February 9, 2023
I genuinely worry based on family history that my mind will run out before my body, and I won't be able to implement my walk into the woods/row into the ocean plan.
posted by jellywerker at 10:42 AM on February 9, 2023 [15 favorites]
posted by jellywerker at 10:42 AM on February 9, 2023 [15 favorites]
It’s Medicaid that requires spending down. Medicare as far as I know (and I have it) has no income requirement.
Thanks for the correction. I watched a friend’s parent go through this, and the financial gymnastics his spouse had to jump through to not lose her house while legally having little enough money that she could still afford his nursing home- but I’m still confused between the programs.
posted by Mchelly at 10:45 AM on February 9, 2023 [3 favorites]
Thanks for the correction. I watched a friend’s parent go through this, and the financial gymnastics his spouse had to jump through to not lose her house while legally having little enough money that she could still afford his nursing home- but I’m still confused between the programs.
posted by Mchelly at 10:45 AM on February 9, 2023 [3 favorites]
Forget religion, if it's ever scientifically proven that there is an afterlife it will be because private equity paid for the research so they could figure out a way to monetize it.
posted by The Card Cheat at 10:47 AM on February 9, 2023 [26 favorites]
posted by The Card Cheat at 10:47 AM on February 9, 2023 [26 favorites]
My mother died five years ago after a five-plus year struggle with Alzheimer's and what was probably a stroke that preceded a three-month rapid decline and death. I'm still so angry about the financial side of it (separately from the "shake fist at the universe because my mama is dead" part) that I can't talk about it in terms suitable for public consumption.
Two years before she went into hospice, she moaned to me "why can't I just die?", lamenting her failing mind and body, and I'm sure one of the pieces of the answer is that private equity gets more from her living miserably than they could get from medically assisted suicide.
posted by gentlyepigrams at 11:14 AM on February 9, 2023 [27 favorites]
Two years before she went into hospice, she moaned to me "why can't I just die?", lamenting her failing mind and body, and I'm sure one of the pieces of the answer is that private equity gets more from her living miserably than they could get from medically assisted suicide.
posted by gentlyepigrams at 11:14 AM on February 9, 2023 [27 favorites]
Get your living wills in place people - and move to a state that allows dignity in dying.
It doesn't fix the shitshow described above, but it sure makes it less shit.
posted by lalochezia at 11:39 AM on February 9, 2023 [8 favorites]
It doesn't fix the shitshow described above, but it sure makes it less shit.
posted by lalochezia at 11:39 AM on February 9, 2023 [8 favorites]
Why not include rent? If she had died in a hospital or hospice center, they charge insurance/Medicare for her room.
But that would not be a cost to the family, which is what the article is about. Both my parents went through hospice. My mom was in memory care for dementia and my dad spent a few weeks in a nursing home after a stroke. While I'm not saying it was ideal, the costs to the family weren't significantly high because Medicare cover my dad, and my mom was already paying for living in the retirement home.
posted by CheeseDigestsAll at 11:46 AM on February 9, 2023 [2 favorites]
But that would not be a cost to the family, which is what the article is about. Both my parents went through hospice. My mom was in memory care for dementia and my dad spent a few weeks in a nursing home after a stroke. While I'm not saying it was ideal, the costs to the family weren't significantly high because Medicare cover my dad, and my mom was already paying for living in the retirement home.
posted by CheeseDigestsAll at 11:46 AM on February 9, 2023 [2 favorites]
Oof. Back to back parental dementia and alzheimer's diagnoses have consumed the last 10 years of my life, nearly a third of my adult life. This story is heartbreaking and prescient as boomers age into the decades in which these conditions are prevalent. Both of my parents illnesses have been characterized by long plateaus. Whenever anyone asks how my mom is, my answer is generally "she's hanging in there" and "she's somewhere near the end of her life but we don't know how near." Agonizing emotionally and not the least of which because we simply have no way of knowing how long of a time horizon to plan for her care costs.
The one thing this author didn't mention in this absolutely excellent piece, is the drain of caring for a loved when EVEN when they are receiving full-time, 24 hr care. My brother and I were fully taxed by the situation when my mom was still at home with fulltime care. Caregivers do heroic work and are paid very little, even though it is mainly out of reach for many. Therefore there is high turnover- people calling out with no notice, no one who can cover, etc. Even when someone is able to cover, they don't know the particulars of mom's care, and we ended up either covering exhausting overnight shifts ourselves while trying to maintain jobs and families, or spending time briefing new caregivers several times a week on where things are, what mom needs, how to do it, etc. Swinging by the house. We were at our wit's end and eventually were able to shift her to memory care, but I still remember this period as one of the most stressful in my life, thinking "this is what its like when we have FULL TIME care?!?". And both of us with understanding jobs where we could check out early, come in late or miss work all together to handle a lapse in care.
posted by rene_billingsworth at 11:48 AM on February 9, 2023 [27 favorites]
The one thing this author didn't mention in this absolutely excellent piece, is the drain of caring for a loved when EVEN when they are receiving full-time, 24 hr care. My brother and I were fully taxed by the situation when my mom was still at home with fulltime care. Caregivers do heroic work and are paid very little, even though it is mainly out of reach for many. Therefore there is high turnover- people calling out with no notice, no one who can cover, etc. Even when someone is able to cover, they don't know the particulars of mom's care, and we ended up either covering exhausting overnight shifts ourselves while trying to maintain jobs and families, or spending time briefing new caregivers several times a week on where things are, what mom needs, how to do it, etc. Swinging by the house. We were at our wit's end and eventually were able to shift her to memory care, but I still remember this period as one of the most stressful in my life, thinking "this is what its like when we have FULL TIME care?!?". And both of us with understanding jobs where we could check out early, come in late or miss work all together to handle a lapse in care.
posted by rene_billingsworth at 11:48 AM on February 9, 2023 [27 favorites]
My mom stopped eating and drinking on purpose (Parkinson’s and didn’t want to end up on a tube), and we think my mother in law took an overdose of blood thinner. Both had DNRs but the nursing home called us anyway for my mom (luckily my sister had the Health Care Power of Attorney) and the EMTs insisted on transporting the MIL to a hospital where they put her on a respirator until the family got the lawyers on it next day. Meanwhile my lifelong moocher/squatter of a 93-year-old father has been on hospice care for nearly two years because his kidneys almost shut down, and is living on Social Security, Meals on Wheels, and my sister’s husband’s charity. None of this works very well.
posted by Peach at 11:58 AM on February 9, 2023 [14 favorites]
posted by Peach at 11:58 AM on February 9, 2023 [14 favorites]
@ mikesch
posted by Aardvark Cheeselog at 11:59 AM on February 9, 2023 [27 favorites]
This is going to be a major problem going forward, first for those whose end of life care is suffering from lack of funds, being shuffled between caregivers, etc, but also for future generations since the generation that's about to die is the last one to amass a large amount of wealth. Normally that would be redistributed to the family as they die, but now all that life savings plus some more is going to go to private equity as late in life medical care and hospice drains their funds so their descendants never see it. It's just going to be gone from the general economy.Wins the "grim meathook future of the day" award. Thanks, I hate it.
posted by Aardvark Cheeselog at 11:59 AM on February 9, 2023 [27 favorites]
The article I linked to up thread suggests they don’t necessarily have that much wealth. Most don’t have enough to imagine retiring let alone spend it on health care.
posted by Peach at 12:01 PM on February 9, 2023 [3 favorites]
posted by Peach at 12:01 PM on February 9, 2023 [3 favorites]
Watching my father's relatively quick yet still too slow death made me feel very strongly that a fast death is the luckiest thing that can happen to any being.
Death with dignity at a time and place of ones choosing is the only humane option. Profits be damned.
posted by J-Garr at 12:43 PM on February 9, 2023 [8 favorites]
Death with dignity at a time and place of ones choosing is the only humane option. Profits be damned.
posted by J-Garr at 12:43 PM on February 9, 2023 [8 favorites]
Feels like we're all just ATMs made out of flesh and blood for others to cash out on. Lols.
posted by nikoniko at 12:43 PM on February 9, 2023 [11 favorites]
posted by nikoniko at 12:43 PM on February 9, 2023 [11 favorites]
It is weird that the one thing that will happen to all of us, and most of us DO NOT WANT, is so poorly handled and fucked up.
I think we need to dispense with framing things this way, even casually. It is not at all weird, it is not even surprising anymore. It's theft, it is the capture of wealth, and in the past few generations we have just seen it get more amplified in everything we experience. Including the death part.
posted by elkevelvet at 12:48 PM on February 9, 2023 [16 favorites]
I think we need to dispense with framing things this way, even casually. It is not at all weird, it is not even surprising anymore. It's theft, it is the capture of wealth, and in the past few generations we have just seen it get more amplified in everything we experience. Including the death part.
posted by elkevelvet at 12:48 PM on February 9, 2023 [16 favorites]
I think capitalism and the fucked up US healthcare system are obviously the big causes of these issues, but maybe we could make a bigger effort to change things if our society wasn't so strangely closed off to this problem. My family's life has been turned upside down by my dad's struggles with dementia, and a big thing I have noticed (aside from there being almost no help) is that people find the topic uncomfortable and most people who have not yet dealt with this kind of shit seem to believe on some level that it will never happen to their parents. It's easier to talk about a loved one's battle with cancer than it is to get any good emotional support when your dad gets old and his brain melts. It is extremely weird because it is something almost everyone has to deal with eventually. If not dementia, one of many, many other horrible indignities of aging.
posted by cakelite at 12:58 PM on February 9, 2023 [11 favorites]
posted by cakelite at 12:58 PM on February 9, 2023 [11 favorites]
But that would not be a cost to the family, which is what the article is about.
The fact that Medicare would cover shelter when dying in a hospital or assistance facility but not when dying at home is a crucial difference in an article talking about the cost of dying at home. I think we assume that all seniors have paid off houses but it doesn't seem like that was true in this case.
posted by muddgirl at 1:03 PM on February 9, 2023 [6 favorites]
The fact that Medicare would cover shelter when dying in a hospital or assistance facility but not when dying at home is a crucial difference in an article talking about the cost of dying at home. I think we assume that all seniors have paid off houses but it doesn't seem like that was true in this case.
posted by muddgirl at 1:03 PM on February 9, 2023 [6 favorites]
I think another, pernicious, issue here is the assumption that women will take on the caregiving. This article, for example, elides the issue of who provides full time care at home. Often this care, as others above have recognized, is impossible for untrained family members to provide, even if they are willing (I'm thinking of things like vent care and diapering). Like so many other problems in American life, practicalities are left to the "family" to manage and there is no political attention to what can be done.
posted by Il etait une fois at 1:08 PM on February 9, 2023 [15 favorites]
posted by Il etait une fois at 1:08 PM on February 9, 2023 [15 favorites]
While I'm not saying it was ideal, the costs to the family weren't significantly high because Medicare cover my dad, and my mom was already paying for living in the retirement home.
Medicare has time limits on out of hospital care. Something like 120 days for a nursing home and I forget what for hospice. If you end up not dying quickly enough, it's a serious drain.
It wasn't always that way. The cost of nursing homes and inpatient hospice has skyrocketed in the past 20 or so years. And adding insult to injury, reliable skilled home care is basically unavailable at any price short of employing people full time directly. There simply aren't enough people to do the work that needs to be done. My neighbor can't get someone to reliably show up even once a week from any of the agencies at this point.
It's such a shit show compared to what we dealt with with my mom and her mom that it makes me sick.
posted by wierdo at 1:11 PM on February 9, 2023 [7 favorites]
Medicare has time limits on out of hospital care. Something like 120 days for a nursing home and I forget what for hospice. If you end up not dying quickly enough, it's a serious drain.
It wasn't always that way. The cost of nursing homes and inpatient hospice has skyrocketed in the past 20 or so years. And adding insult to injury, reliable skilled home care is basically unavailable at any price short of employing people full time directly. There simply aren't enough people to do the work that needs to be done. My neighbor can't get someone to reliably show up even once a week from any of the agencies at this point.
It's such a shit show compared to what we dealt with with my mom and her mom that it makes me sick.
posted by wierdo at 1:11 PM on February 9, 2023 [7 favorites]
We could also increase reimbursement rates for medicaid nursing home patients so that the facilities weren't awful awful places with terrible staffing and care reports so that people weren't terrified of having to go to a place with 24 hour care if it's needed.
Reading the regulations of the minimums of what care that nursing homes have to provide is a excercise in depression, by the way.
I have a many many things to say on this ( acute vs subacute rehab, nursing home facilities for custodial care, long term acute care facilities) and the how much control insurance have over placement and decision making in this process.
Medicare only covers so much rehab (up to 100 days with some exceptions for different episodes,
say someone has a stroke and then another one ten years later) and no coverage for custodial or long term placement. The medicaid asset limits are criminally low (it's 2000 dollars, it was set in 1989 from what I can tell) excluding a single property and other regulations.
Health care overall is terrifying.
posted by AlexiaSky at 1:18 PM on February 9, 2023 [6 favorites]
Reading the regulations of the minimums of what care that nursing homes have to provide is a excercise in depression, by the way.
I have a many many things to say on this ( acute vs subacute rehab, nursing home facilities for custodial care, long term acute care facilities) and the how much control insurance have over placement and decision making in this process.
Medicare only covers so much rehab (up to 100 days with some exceptions for different episodes,
say someone has a stroke and then another one ten years later) and no coverage for custodial or long term placement. The medicaid asset limits are criminally low (it's 2000 dollars, it was set in 1989 from what I can tell) excluding a single property and other regulations.
Health care overall is terrifying.
posted by AlexiaSky at 1:18 PM on February 9, 2023 [6 favorites]
The system isn't broken, it's just designed to benefit the wrong people. It's deliberate. And working as intended
posted by Jacen at 1:22 PM on February 9, 2023 [19 favorites]
posted by Jacen at 1:22 PM on February 9, 2023 [19 favorites]
Medicare has time limits on out of hospital care. Something like 120 days for a nursing home and I forget what for hospice.
And those time limits will reset if a qualifying event takes place. I don't know how many times we were grateful that elderly family members were hospitalized again because it would mean they'd qualify for another round of rehab/in-home care.
posted by RonButNotStupid at 1:43 PM on February 9, 2023 [4 favorites]
And those time limits will reset if a qualifying event takes place. I don't know how many times we were grateful that elderly family members were hospitalized again because it would mean they'd qualify for another round of rehab/in-home care.
posted by RonButNotStupid at 1:43 PM on February 9, 2023 [4 favorites]
How much of this is that it now costs more to do something that used to be more affordable, vs more expensive life-prolonging options being on the market?
posted by rebent at 1:47 PM on February 9, 2023
posted by rebent at 1:47 PM on February 9, 2023
It is weird that the one thing that will happen to all of us, and most of us DO NOT WANT, is so poorly handled and fucked up.
Not so weird when you take into account the USA's overall ethos to helping others and the general approach to amassing wealth. At the highest level we are a "winner takes all" culture, so why would healthcare and end-of-life be any different?
My father passed away 12 years ago, and my mother passed away a year ago, and I'm an only child, so unfortunately I have some experience in this. Myself and other mefiites contributed to a related thread that I'd encourage anyone facing a end-of-life situation to read. Which, if we're being practical, is basically...everyone?
In the hopes of potentially helping others down the road, here's some insights based on my experiences:
The randomness of it all
The first thing to consider is that although there are "patterns" that accompany a decline in health, each case is different and there are so many variables that it will seem overwhelming and incomprehensible.
Not so weird when you take into account the USA's overall ethos to helping others and the general approach to amassing wealth. At the highest level we are a "winner takes all" culture, so why would healthcare and end-of-life be any different?
My father passed away 12 years ago, and my mother passed away a year ago, and I'm an only child, so unfortunately I have some experience in this. Myself and other mefiites contributed to a related thread that I'd encourage anyone facing a end-of-life situation to read. Which, if we're being practical, is basically...everyone?
In the hopes of potentially helping others down the road, here's some insights based on my experiences:
The randomness of it all
The first thing to consider is that although there are "patterns" that accompany a decline in health, each case is different and there are so many variables that it will seem overwhelming and incomprehensible.
- My first piece of advice is to get someone experienced in understanding the system and who doesn't have a specific conflict of interest. For example, trying to understand the difference between Medicare Part A and Medicare Part B as well as how supplemental insurance (if any) can help defray costs is a major challenge. I don't have any particular resources: I was lucky enough to have a family friend who was in the hospice industry, but I know there are consultants out there who who will help for a flat fee (as well as non-profits who will help for free). Hospitals typically have an in-house staff member whose job it is to help explain the issues. While these folks are not automatically good or bad (I met both types) take their advice with a grain of salt and get a second opinion.
- Here is the scenario I'm most familiar with as both my parents had relatively "quick" deaths and so I never had to deal with the long term consequences:
- Loved one goes to the hospital for some medical reason. Perhaps a stroke, or another medical emergency.This may involve intensive care and then transfer to another department.
- Assuming they are stabilized medically, the hospital is going to want to discharge them ASAP and transfer them to rehabilitation. This is where things get tricky, because not all rehab centers are alike. There are decent ones and there are horrible ones. Do not agree to a rehab center until you see it in person! Also be very careful of a "bait and switch", this almost happened to my mom. When she was admitted to the hospital after a stroke, I was told that she had been accepted into the best rehab center in the area. Fast forward 10 days later, the day before she was due to be discharged, suddenly there was a problem: the rehab center wouldn't accept her because she didn't meet their minimum standard of health for a successful rehab. How's that for a paradox? She was medically cleared for discharge, but not well enough to be seen as a successful candidate for rehab. So now what?
- Turns out there are plenty of rehab centers that will take just about anybody if there's money to be made. Many of these places are "rehab" in name only. To be blunt: some of these places are where people go to die. I saw one and it was hell on earth. Keep in mind that your geographical location matters, if you are in a sparsely populated area you will have less options for rehab. To avoid your loved one ending up in a subpar place you are going to have to fight the discharge. Medicare actually has a provision for this, but once you start the process, the clock is ticking. You are essentially buying two or three days of extra time to find a better rehab facility. Once you use up the patient's first appeal, the hospital can begin charging you daily. (I can't stress enough how critical this stage is, you may actually want to take the financial hit for a few days and look into options such as widening your search for better rehab centers that might be one or two hours away, and have available beds.)
- There's at least a few other scenarios that could happen here too. If the patient isn't qualified for rehab and they aren't qualified to stay in the hospital, this is where nursing homes enter the picture. Which is a whole other thread, and one I never had to contemplate.
Although keep in mind that this being America, there is always a financial burden waiting. Specifically, and I can't remember what the criteria is, but there are guidelines for how long people are covered my Medicare for hospice before you have to start paying out of pocket for the room.
I hope this helps someone at some point. Any way you look at it, it's a shameful system that forces people to have to make these decisions.
A friend of mine who lives in Germany came back to the States about 5 years ago to try and price a long-term care facility/home for his mother, who had been diagnosed with Alzheimer's and was starting to decline.
No siblings. His father passed away years ago. No aunts, uncles or cousins in the entire state.
The cheapest place we could find that would accept her was $60,000/year, and required a large deposit. It's probably more expensive now, and this is in a large urban city with plenty of options. I have no idea how much it might cost elsewhere (rural areas, different parts of the US).
I'm putting this comment here for people wondering about how much it might cost you to put an ailing parent in a long-term care facility, especially only children who cannot in any possible way take on caregiving duties themselves or farm that responsibility out to a nearby family member.
Caveat: It's possible that memory care facilities (that specialize in caring for residents with dementia) are far more costly than other senior living homes or hospice care.
posted by Unicorn on the cob at 2:56 PM on February 9, 2023 [2 favorites]
No siblings. His father passed away years ago. No aunts, uncles or cousins in the entire state.
The cheapest place we could find that would accept her was $60,000/year, and required a large deposit. It's probably more expensive now, and this is in a large urban city with plenty of options. I have no idea how much it might cost elsewhere (rural areas, different parts of the US).
I'm putting this comment here for people wondering about how much it might cost you to put an ailing parent in a long-term care facility, especially only children who cannot in any possible way take on caregiving duties themselves or farm that responsibility out to a nearby family member.
Caveat: It's possible that memory care facilities (that specialize in caring for residents with dementia) are far more costly than other senior living homes or hospice care.
posted by Unicorn on the cob at 2:56 PM on February 9, 2023 [2 favorites]
It is 120 days for rehab now with medicare, in episodes. The thing to understand about that is it must be rehab, for example deconditioning due to an ICU stay will qualify, but dementia will not as no amount of treatment will improve the condition. It gets very into the weeds with people with complex histories and what rehab means, what exactly is improvement is and how long it actually gets paid for. Also peoples ability to participate in it comes into play. Rehab is difficult exhausting work.
posted by AlexiaSky at 3:02 PM on February 9, 2023 [3 favorites]
posted by AlexiaSky at 3:02 PM on February 9, 2023 [3 favorites]
What happens when there's no extra money? Or no relatives to deliver any care? Or both?
posted by plonkee at 3:13 PM on February 9, 2023 [4 favorites]
posted by plonkee at 3:13 PM on February 9, 2023 [4 favorites]
Also peoples ability to participate in it comes into play.
And what doesn't (or at least didn't as of a few years ago) come into play is the provider's ability to provide rehab. From the moment you check in, the clock is counting down whether you're actually getting rehab or not. If the rehab place is short-staffed and they're unable to get to you every day.....it still counts against your allotted days. If you have a doctor's appointment or a recurring medical procedure which precludes you from doing rehab on a given day.....it still counts against you. If you contract Clostridioides difficile during your stay because of the facility's poor cleanliness and are physically unable to do rehab.......it still counts against you. Whatever number of days you're given is all you get. There's no outcome-based medicine here.
posted by RonButNotStupid at 3:19 PM on February 9, 2023 [4 favorites]
And what doesn't (or at least didn't as of a few years ago) come into play is the provider's ability to provide rehab. From the moment you check in, the clock is counting down whether you're actually getting rehab or not. If the rehab place is short-staffed and they're unable to get to you every day.....it still counts against your allotted days. If you have a doctor's appointment or a recurring medical procedure which precludes you from doing rehab on a given day.....it still counts against you. If you contract Clostridioides difficile during your stay because of the facility's poor cleanliness and are physically unable to do rehab.......it still counts against you. Whatever number of days you're given is all you get. There's no outcome-based medicine here.
posted by RonButNotStupid at 3:19 PM on February 9, 2023 [4 favorites]
Caveat: It's possible that memory care facilities (that specialize in caring for residents with dementia) are far more costly than other senior living homes or hospice care.
My grandmother was in a specialized Alzheimer's care facility for a few years, and the cost was much higher than the other top-rated nursing homes in the area.
posted by thomas j wise at 3:27 PM on February 9, 2023 [3 favorites]
My grandmother was in a specialized Alzheimer's care facility for a few years, and the cost was much higher than the other top-rated nursing homes in the area.
posted by thomas j wise at 3:27 PM on February 9, 2023 [3 favorites]
It's just going to be gone from the general economy.
It's going into the same pockets all the other money is
posted by Ray Walston, Luck Dragon at 3:57 PM on February 9, 2023 [7 favorites]
It's going into the same pockets all the other money is
posted by Ray Walston, Luck Dragon at 3:57 PM on February 9, 2023 [7 favorites]
Once Medicare runs out Medicaid starts, once the person in need meets the asset limit $2000 cash max etc
Some states will do estate recovery to get the Medicaid-paid support repaid from the estate.
Only assets in the estate’s probate are subject to Medicaid recovery, which the Transfer on Death Deed can obviate.
posted by Heywood Mogroot III at 4:00 PM on February 9, 2023 [1 favorite]
Some states will do estate recovery to get the Medicaid-paid support repaid from the estate.
Only assets in the estate’s probate are subject to Medicaid recovery, which the Transfer on Death Deed can obviate.
posted by Heywood Mogroot III at 4:00 PM on February 9, 2023 [1 favorite]
My grandfather lives in a locked memory unit of a VA nursing home facility because of vascular dementia. The cost is about 2,300 a month.
My mother visits everyday, they still managed to loose his hearing aids, his clothes have gone missing and my mom keeps buying him more, he still requires my mother to escort him to and from appointments, transportation is not covered, she is watching his meds like a hawk, and he's had a few falls and on and on and on. Getting him in took me, a professional social worker to handle the transition along with the actual social worker assigned to his care, and the fact that my family is incredibly organized so things like his dd214 were easily findable and available. This service is only available to veterans and spouses with very specific admission requirements that is the VAs way.
But he doesn't have bed sores, they do keep him clean, and mostly safe (way more safe than we could have at home). It's an incredibly frustrating but the cost of care is "only" 28000( I rounded up and didn't include other costs) a year instead of the other things being quoted here. Also, I've been in quite a few nursing facilities and reported quite a few facilities in my professional career for neglect and abuse and it's honestly not a bad facility.
Another point and I promise I'll stop talking about random things I know - even people on medicaid pay for their long term care. Nursing facilities can take almost all of any recieved benefits to pay for the cost of care. In IL patients are given a grand total of $30 from the total of their benefits (unless the total cost of the facility is less than their benefits) to pay for care. So for someone recieving 1000 a month in retirement benefits, 970 would go to the facility.
posted by AlexiaSky at 4:05 PM on February 9, 2023 [7 favorites]
My mother visits everyday, they still managed to loose his hearing aids, his clothes have gone missing and my mom keeps buying him more, he still requires my mother to escort him to and from appointments, transportation is not covered, she is watching his meds like a hawk, and he's had a few falls and on and on and on. Getting him in took me, a professional social worker to handle the transition along with the actual social worker assigned to his care, and the fact that my family is incredibly organized so things like his dd214 were easily findable and available. This service is only available to veterans and spouses with very specific admission requirements that is the VAs way.
But he doesn't have bed sores, they do keep him clean, and mostly safe (way more safe than we could have at home). It's an incredibly frustrating but the cost of care is "only" 28000( I rounded up and didn't include other costs) a year instead of the other things being quoted here. Also, I've been in quite a few nursing facilities and reported quite a few facilities in my professional career for neglect and abuse and it's honestly not a bad facility.
Another point and I promise I'll stop talking about random things I know - even people on medicaid pay for their long term care. Nursing facilities can take almost all of any recieved benefits to pay for the cost of care. In IL patients are given a grand total of $30 from the total of their benefits (unless the total cost of the facility is less than their benefits) to pay for care. So for someone recieving 1000 a month in retirement benefits, 970 would go to the facility.
posted by AlexiaSky at 4:05 PM on February 9, 2023 [7 favorites]
Both of my parents have passed away within the past 3 months, and dealing with all of the above was/has been horrible. I blame Regan, who instituted the hospice care system as it functions today. My partner keeps lamenting "when will this all be over?" (my parents died destitute and without wills, the value of their home was swindled by online scammers so the house only has 7k of equity in it, paying for my dad's memorial service and burial, not to mention my mom's, is a nightmare we're still working out) and I'm like, dude, you don't realize this but this was the fast-tracked version of how all of this shit could have gone down, like, my mom suddenly got a cancer dx with 6 months to live and my dad had the stroke that killed him in the midst of all of that so we went from this time a year ago nobody thinking about their impending certain doom to bam, 2 not that old seniors dead, in a span of less time than it takes to gestate a neonate. But my father died because my mother's hospice care team insisted that she was "ready to go home" to die (when she should have gone into a SNF or a LTCF for a few months after a colostomy surgery) when she was basically still a fully-functioning human with a million needs that she manipulated my siblings and I, unskilled randos, into managing for her. My youngest sister had promised to take care of her independently of anything, so when my other sister and I got burned out and left, my younger sister caved within a matter of days and left my mother and my father (who was already disabled from a stroke from Dec 2021) alone in the home together and... My father had a stroke while trying to help lift my 200+ pound mother out of bed to get to the commode. And yeah, the stroke killed him within a month and a half, and nobody was planning for that or expecting it, and absolutely it was inappropriate for my mom to be sent home to die when she had so many more months to live and needed full time care and wasn't paying my sisters or myself anything to do the constant exhausting demanding work that is caring for an obese dying person with a cluster B personality disorder. Yet the hospice staff, who in the early days, stopped by the house once a week or so got paid for each and every day she was enrolled in hospice saw no problem with any of this, because why would they, they're getting paid a guaranteed amount of money to do like 2% of the work while we did the remaining 98% of the work for free.
I guess a saving grace or hot tip that people might want to know about is that a dying person cannot be sent home if it is unfit for habitation, which I only learned when I explained to my father's "death doctor" that the house lacked functioning plumbing, and she said that he could not be returned to a home without functioning plumbing, so he would have to remain at the hospital to die. So I frantically called their town's water department to suck out the city sewer that their home's plumbing drained into, bought a $100 toilet that my cousin installed for free, and thus we were able to bring my dad home to die, with barely functioning but still legally acceptable plumbing on the verge of, er, crapping out at any moment.
But, I'm just saying. If there's nobody to care for their dying loved at home and there are no resources to do so... Plumbing. It's broken. Back pocket piece of advice, and your loved one will at least be able to get round the clock care while you cling to what little remains of your sanity. Even with Medicare limitations in place. Other advice: do not age in a rural area. Find a nice midsized city with some public transit options and a decent public library and hospital system and age there, because good God my parents' biggest mistake was moving to an unincorporated rural town with about 6k people in it adjacent to another just-barely-larger town with not many more resources.
Final piece of advice: don't get sick or grow old in America.
posted by erattacorrige at 4:12 PM on February 9, 2023 [21 favorites]
I guess a saving grace or hot tip that people might want to know about is that a dying person cannot be sent home if it is unfit for habitation, which I only learned when I explained to my father's "death doctor" that the house lacked functioning plumbing, and she said that he could not be returned to a home without functioning plumbing, so he would have to remain at the hospital to die. So I frantically called their town's water department to suck out the city sewer that their home's plumbing drained into, bought a $100 toilet that my cousin installed for free, and thus we were able to bring my dad home to die, with barely functioning but still legally acceptable plumbing on the verge of, er, crapping out at any moment.
But, I'm just saying. If there's nobody to care for their dying loved at home and there are no resources to do so... Plumbing. It's broken. Back pocket piece of advice, and your loved one will at least be able to get round the clock care while you cling to what little remains of your sanity. Even with Medicare limitations in place. Other advice: do not age in a rural area. Find a nice midsized city with some public transit options and a decent public library and hospital system and age there, because good God my parents' biggest mistake was moving to an unincorporated rural town with about 6k people in it adjacent to another just-barely-larger town with not many more resources.
Final piece of advice: don't get sick or grow old in America.
posted by erattacorrige at 4:12 PM on February 9, 2023 [21 favorites]
"The hospital dumped my father to rehab, rehab figured out in about 10 minutes there was nothing they could fix and booted him to a nursing home,"
This is what happened to my grandmother. By the time all the family got to the hospital they were ready to ship her back, no one wants a death on their watch it seems. One of my uncles convinced them to move her to palliative care.
posted by 922257033c4a0f3cecdbd819a46d626999d1af4a at 4:26 PM on February 9, 2023 [1 favorite]
This is what happened to my grandmother. By the time all the family got to the hospital they were ready to ship her back, no one wants a death on their watch it seems. One of my uncles convinced them to move her to palliative care.
posted by 922257033c4a0f3cecdbd819a46d626999d1af4a at 4:26 PM on February 9, 2023 [1 favorite]
I just want to give all my fellow-travelers who have dealt with this with parents and other beloved elderly relatives a big hug. It all sucks and is horrible and I wish I knew what to do to keep it from happening to the next generation.
posted by gentlyepigrams at 4:40 PM on February 9, 2023 [12 favorites]
posted by gentlyepigrams at 4:40 PM on February 9, 2023 [12 favorites]
I just don't know what I'll do. My 70 year old parents live in another state and refuse to talk about end of life care with each other or with me, and I'm a single woman with no siblings, no children, no assets and all of my friends are poor and marginalized, and many of them have chronic health issues already.
I'm probably just going to be thrown in a chum bucket in about 40 years, since I know any hope for an "inheritance" will end up going to last minute panicked unplanned healthcare for my parents and I don't expect any of the advice in posts above works for the person who ultimately is going to be trying to negotiate for their own care, who lacks family entirely.
I was going to say "this fucking country" (the US), but late-life care is collapsing everywhere, notably my expired backup plan to return to the Old Country (England, hahahahaha...)
posted by zinful at 4:44 PM on February 9, 2023 [4 favorites]
I'm probably just going to be thrown in a chum bucket in about 40 years, since I know any hope for an "inheritance" will end up going to last minute panicked unplanned healthcare for my parents and I don't expect any of the advice in posts above works for the person who ultimately is going to be trying to negotiate for their own care, who lacks family entirely.
I was going to say "this fucking country" (the US), but late-life care is collapsing everywhere, notably my expired backup plan to return to the Old Country (England, hahahahaha...)
posted by zinful at 4:44 PM on February 9, 2023 [4 favorites]
I guess I'm in the minority, but I don't want to die at home and I don't care where I die. At that point, why would I care where I am? The only thing I care about is that it happens quickly when my time comes.
My mother passed away just before Christmas, in a hospital. She'd been living in an aged care home and was transferred to hospital when the staff had trouble getting her to wake up and it turned out she'd had another stroke. We spoke with the doctor treating her and confirmed that she was in a state that invoked her Advanced Health Directive. I can't stress enough how important it is to have this or something like it in place - choosing where you die is unlikely to actually work out, but you can choose how you die, to an extent. For us, it removed both any uncertainty about what Mum would have wanted and the need for us to make decisions such as removing artificial feeding and antibiotics, which would have been incredibly hard to make.
Mum managed to hang on until all her children and grandchildren had visited and she slipped away 30 minutes later. The fact that she was in a hospital bed rather than at home or 'at home' (I don't see how an apartment rented for the express purpose of someone dying there is home any more than a hospital room is) didn't matter one little bit. It didn't matter to her and it didn't matter to anyone else. Dying is sad and ugly and I don't understand the desire to dress it up to be something different or to pretend that it's not. As distressing as it is, it's part of life.
Get yourself an Advanced Care Directive, people. Don't make your family have to decide how you die. Where that happens doesn't matter, but you can make sure you have a merciful death if you plan ahead a little bit.
posted by dg at 4:52 PM on February 9, 2023 [9 favorites]
My mother passed away just before Christmas, in a hospital. She'd been living in an aged care home and was transferred to hospital when the staff had trouble getting her to wake up and it turned out she'd had another stroke. We spoke with the doctor treating her and confirmed that she was in a state that invoked her Advanced Health Directive. I can't stress enough how important it is to have this or something like it in place - choosing where you die is unlikely to actually work out, but you can choose how you die, to an extent. For us, it removed both any uncertainty about what Mum would have wanted and the need for us to make decisions such as removing artificial feeding and antibiotics, which would have been incredibly hard to make.
Mum managed to hang on until all her children and grandchildren had visited and she slipped away 30 minutes later. The fact that she was in a hospital bed rather than at home or 'at home' (I don't see how an apartment rented for the express purpose of someone dying there is home any more than a hospital room is) didn't matter one little bit. It didn't matter to her and it didn't matter to anyone else. Dying is sad and ugly and I don't understand the desire to dress it up to be something different or to pretend that it's not. As distressing as it is, it's part of life.
Get yourself an Advanced Care Directive, people. Don't make your family have to decide how you die. Where that happens doesn't matter, but you can make sure you have a merciful death if you plan ahead a little bit.
posted by dg at 4:52 PM on February 9, 2023 [9 favorites]
Yes. I work at a small, rural facility that has rehab, skilled nursing, and "nursing home" (residents who will live here, sometimes for years, until they die, with a ridiculously wide range of diagnoses and prognoses).
For all of these people, if there is a better place for them to be, we work hard to try to get them there.
So, starting with rehab. We have several people who spend a stupid amount of time deciding who to accept, looking at "rehab potential" (is there any hope of them getting better?) "discharge planning" (we will get back to that in a sec) and insurance coverage.
The hospitals who send us patients lie about how they're doing. We had a gentleman whose caregiver said he has never spoken since she's had him, and his notes from the hospital quoted multi-word phrases from him. When he showed up, he had no apparent ability to control his movements, no relatives, and no power of attorney, and his needs exceeded the ability of the person running the care home to meet. He died here, and it was probably the least awful outcome possible.
Sometimes they send us patients who are not medically stable, and unable to do therapy for one or more reasons (uncontrolled pain! Blood pressure tanks when they stand up!). We still have to try to treat them, which is not ideal for anyone. The hospitals are overcrowded and want them out of there ASAP, so they can give the bed to someone with greater medical needs.
Sometimes, patients now have increased care needs than they did prior to hospitalization. Sometimes the family can manage, sometimes they qualify for medicaid and we or another facility can take them (there is a massive shortage of beds for all levels of care, as well as in-home care-givers). Sometimes there is literally nowhere to send them and we end up keeping them because the only alternative is leaving them at the bus stop (we cannot leave them at the bus stop unless they were homeless before and want to go back to their prior situation.) Sometimes, they need more care than the family can provide, but there's too much money for Medicaid, and we cobble together resources for them as best as we and they can, but insurance (or therapy progress)says time is up, so they must be sent home. None of us feel good about those. I expect I have one on my current caseload. Kid is a plane-ride away, patient was driving prior to admission, and has advanced enough dementia to ask where the bathroom is while sitting on the toilet (at least when tired).
For people who live here, we have a range from "we are hauling ass to find you an apartment, since you've gotten better enough that insurance won't let you stay, even though wheelchair accessible apartments do not exist here." to "your children want nothing to do with you because you were horrible to them and are abusive to the staff now." to "for the love of God, would you please take your mother with advanced dementia off full-code status?" to families who visit most days on their lunch hours or take their relatives out weekly. We do our best by our residents, and work hard to find providers and get and get them to appointments in an under-served rural area, and are genuinely sad when they die (at least most of the time. Much like in a family), but the CNAs are on mandatory overtime, and COVID restrictions are still a thing, and many of our patients make choices that make their own lives materially worse (which is absolutely their right, but limits our ability to address, for example, actively psychotic patients or wounds on the hands of stroke patients who refuse stretching or protective gloves to keep their nails from digging into their palms).
I have seen the job CNAs do, in a place with all the equipment (hospital beds, hoyer lifts, shower gurneys). I would not want to do it here, let alone in a home setting for an indeterminate length of time. I expect I will anyway at some point. My parents have remodeled their house to make it as age-in-place friendly as a house in the woods can be. I think ready access to more of this equipment would make home caregiving easier for many people, but houses are small, equipment is large and expensive, and insurance won't cover much.
I don't know the answer. I know this system is broken, but I also know that there aren't a ton of people who would (or should. Non-compassionate caregivers give poor care) do this work, under any system. I know we are capable of (and, therefore, on a professional level, obligated to, barring other instructions) extending life FAR longer than "the good old days" when most elders got to die at home (at least in the popular understanding. I have many and increasing question about how that actually went down). I did therapy for over a week, trying to get a patient to be able to get out of bed on her own so she could go home, while hearing the bones in her knees grind against each other and her in substantial pain because she was "here for rehab" and it was the only option available to both of us.
I actually have a patient now who's here for IV antibiotics who, when dischaged, will get on a plane to go back home to care for a bed-bound mother, a situation unchanged for about 10 years. Which seems like a metaphor for something.
For a Medicaid facility, I work at a good one. I still plan to get out as soon as I can.
posted by DebetEsse at 4:55 PM on February 9, 2023 [34 favorites]
For all of these people, if there is a better place for them to be, we work hard to try to get them there.
So, starting with rehab. We have several people who spend a stupid amount of time deciding who to accept, looking at "rehab potential" (is there any hope of them getting better?) "discharge planning" (we will get back to that in a sec) and insurance coverage.
The hospitals who send us patients lie about how they're doing. We had a gentleman whose caregiver said he has never spoken since she's had him, and his notes from the hospital quoted multi-word phrases from him. When he showed up, he had no apparent ability to control his movements, no relatives, and no power of attorney, and his needs exceeded the ability of the person running the care home to meet. He died here, and it was probably the least awful outcome possible.
Sometimes they send us patients who are not medically stable, and unable to do therapy for one or more reasons (uncontrolled pain! Blood pressure tanks when they stand up!). We still have to try to treat them, which is not ideal for anyone. The hospitals are overcrowded and want them out of there ASAP, so they can give the bed to someone with greater medical needs.
Sometimes, patients now have increased care needs than they did prior to hospitalization. Sometimes the family can manage, sometimes they qualify for medicaid and we or another facility can take them (there is a massive shortage of beds for all levels of care, as well as in-home care-givers). Sometimes there is literally nowhere to send them and we end up keeping them because the only alternative is leaving them at the bus stop (we cannot leave them at the bus stop unless they were homeless before and want to go back to their prior situation.) Sometimes, they need more care than the family can provide, but there's too much money for Medicaid, and we cobble together resources for them as best as we and they can, but insurance (or therapy progress)says time is up, so they must be sent home. None of us feel good about those. I expect I have one on my current caseload. Kid is a plane-ride away, patient was driving prior to admission, and has advanced enough dementia to ask where the bathroom is while sitting on the toilet (at least when tired).
For people who live here, we have a range from "we are hauling ass to find you an apartment, since you've gotten better enough that insurance won't let you stay, even though wheelchair accessible apartments do not exist here." to "your children want nothing to do with you because you were horrible to them and are abusive to the staff now." to "for the love of God, would you please take your mother with advanced dementia off full-code status?" to families who visit most days on their lunch hours or take their relatives out weekly. We do our best by our residents, and work hard to find providers and get and get them to appointments in an under-served rural area, and are genuinely sad when they die (at least most of the time. Much like in a family), but the CNAs are on mandatory overtime, and COVID restrictions are still a thing, and many of our patients make choices that make their own lives materially worse (which is absolutely their right, but limits our ability to address, for example, actively psychotic patients or wounds on the hands of stroke patients who refuse stretching or protective gloves to keep their nails from digging into their palms).
I have seen the job CNAs do, in a place with all the equipment (hospital beds, hoyer lifts, shower gurneys). I would not want to do it here, let alone in a home setting for an indeterminate length of time. I expect I will anyway at some point. My parents have remodeled their house to make it as age-in-place friendly as a house in the woods can be. I think ready access to more of this equipment would make home caregiving easier for many people, but houses are small, equipment is large and expensive, and insurance won't cover much.
I don't know the answer. I know this system is broken, but I also know that there aren't a ton of people who would (or should. Non-compassionate caregivers give poor care) do this work, under any system. I know we are capable of (and, therefore, on a professional level, obligated to, barring other instructions) extending life FAR longer than "the good old days" when most elders got to die at home (at least in the popular understanding. I have many and increasing question about how that actually went down). I did therapy for over a week, trying to get a patient to be able to get out of bed on her own so she could go home, while hearing the bones in her knees grind against each other and her in substantial pain because she was "here for rehab" and it was the only option available to both of us.
I actually have a patient now who's here for IV antibiotics who, when dischaged, will get on a plane to go back home to care for a bed-bound mother, a situation unchanged for about 10 years. Which seems like a metaphor for something.
For a Medicaid facility, I work at a good one. I still plan to get out as soon as I can.
posted by DebetEsse at 4:55 PM on February 9, 2023 [34 favorites]
Ah, but I think where it happens does matter, just as each day that someone spends in a hospital increases one's likelihood of dying matters. Because location matters. My dad was 'with it's enough to know that he was being transported home to die. We got to light candles, crack the windows, let in the autumn breeze and light, play music, comfortably eat Doritos and watch "Still Game" on the couch next to his hospital bed while he dozed in and out. He got to experience the comfort of a hassle-free, peaceful death in his own home, staring at the photos of his deceased parents sitting on the bookshelves directly in his sight line as he alternatively sobbed and napped. The hospital was dreadful and even if only for my personal comfort, the watchful offspring, him being at home was about a million times preferable. The neighbors came and paid their respects while he was still alive, we had relatives comes stay at the house likewise. I did this for my dad because he'd had an absolutely awful few years of being a domestic abuse victim (at the hand's of my mom, which I had no idea about) and it just killed me to think of him fading away in a crummy hospital when his favorite place in the world was sitting on the couch and looking out the window at the giant magnolia tree there. So we got him home to see the magnolia tree, and I think he appreciated it. He fell into a profound, peaceful slumber as soon as he got home, but had been unable to sleep well at all when he was in the hospital. It's not possible or reasonable for every dying person, sure, but no, one cannot say, across the board, that for all people, the location of death is meaningless.
posted by erattacorrige at 5:03 PM on February 9, 2023 [19 favorites]
posted by erattacorrige at 5:03 PM on February 9, 2023 [19 favorites]
I promised my husband he could die at home, but I also contracted with a hospice for him that had an inpatient clinic because I knew he liked hospital care when it was bad, and I knew I had limits. It worked out beautifully when he started having pain that wouldn't respond to the pills. God, that clinic was great. They didn't try to feed him, didn't try to force liquids, just gave him pain meds, kept him clean and warm and comfortable, and put in a Foley. He was out of it from about the first hour after we got there. There was a couch where I could sleep, and they brought him meals they assumed I would eat instead, which I did. He could have visitors, including his toddler grandchild, who ran his Matchbox car along the hospital bed rail. The grandchild recently told me "Pop-Pop's not here any more. He's sleeping in the hospital," and I agreed. It was nice for the grandchild to have that memory and a little closure.
Listen, even if you do everything right, the "good death" is rare. Death is awkward, painful, and difficult no matter how you do it. I've been there for my mother and for my husband now, and even if I do everything right, I have the feeling it's gonna be really unpleasant anyway, because it's death. There's a reason billionaires get weird about prolonging life; they think maybe they can spend death out of existence, but I suspect they're fooling themselves.
posted by Peach at 5:32 PM on February 9, 2023 [24 favorites]
Listen, even if you do everything right, the "good death" is rare. Death is awkward, painful, and difficult no matter how you do it. I've been there for my mother and for my husband now, and even if I do everything right, I have the feeling it's gonna be really unpleasant anyway, because it's death. There's a reason billionaires get weird about prolonging life; they think maybe they can spend death out of existence, but I suspect they're fooling themselves.
posted by Peach at 5:32 PM on February 9, 2023 [24 favorites]
I have many and increasing question about how that actually went down
I don’t know, but I know the visiting village nurse in Akenfield said that when she got there she found an old relative shut into a cupboard; and there are 19th c references to pneumonia as "the old man’s friend" because it kills him.
posted by clew at 6:10 PM on February 9, 2023 [5 favorites]
I don’t know, but I know the visiting village nurse in Akenfield said that when she got there she found an old relative shut into a cupboard; and there are 19th c references to pneumonia as "the old man’s friend" because it kills him.
posted by clew at 6:10 PM on February 9, 2023 [5 favorites]
Someone here is smart enough to figure out how to fling my gasping almost-corpse into Mitch McConnell’s 2nd story bedroom window. Please and thank you. Extra credit if I’m on fire when I land.
posted by beckybakeroo at 8:23 PM on February 9, 2023 [14 favorites]
posted by beckybakeroo at 8:23 PM on February 9, 2023 [14 favorites]
don't get sick or grow old in America
80 million boomers were born 1946 - 1964; peak boomer birth year was 1957 so the center of mass of this wave is age ~67 this year, the youngest are still in their late 50s, oldest in their late 70s now. Next 10 years are going to be pretty tough.
posted by Heywood Mogroot III at 8:37 PM on February 9, 2023 [4 favorites]
80 million boomers were born 1946 - 1964; peak boomer birth year was 1957 so the center of mass of this wave is age ~67 this year, the youngest are still in their late 50s, oldest in their late 70s now. Next 10 years are going to be pretty tough.
posted by Heywood Mogroot III at 8:37 PM on February 9, 2023 [4 favorites]
Pile the bodies high on Senator Mike Lee's lawn. Please, please, start the zombie apocalypse there. I want dozens of hands clutching his ankles, coming up from out of the ground, make sure they are radioactive lepers.
In some ways, how things went with my mom, went well. The memory care place killed her with a seroquel overdose, I was down the street caring for an older woman whom I kept alive for two years. I accidentally left my phone at home, with the DNR orders in place, she had been gone an hour, when I got back, and saw the five calls. I raced 40 miles to get there, and line up a funeral director, to come for her, before midnight, and a new day of charges. The funeral director worked with the county crematorium, and he would deliver her ashes. I bought her urn at TJ Max home goods for $16.99. I delivered that to him the next day. My daughter and I delivered her to the mountains, where she asked to be. The state would not negotiate, and took everything. I can now see that financially, I lucked out. My current mood is that nothing is better than something. I rent, I live frugally and I watch my health. There will be no estate, from me, nor will there be cost for me. My children get a free pass. It sounds fanciful but I can be mercilessly pragmatic, when it counts.
I fell into taking care of another person who needed it, but only enough to convince her that choosing to be an invalid was bad decision on her part. She suddenly gets it and her other old lady friends have also convinced her. She has worn out her roommate caregiver. I have stepped away, knowing that I cannot, will not participate in random acts of home care anymore.
Love and duty bind us to those we care for, and the wheels of commerce grind us to a profitable pulp. All of this was before the pandemic. I can't even imagine how burned out caregivers are, these days.
posted by Oyéah at 9:13 PM on February 9, 2023 [3 favorites]
In some ways, how things went with my mom, went well. The memory care place killed her with a seroquel overdose, I was down the street caring for an older woman whom I kept alive for two years. I accidentally left my phone at home, with the DNR orders in place, she had been gone an hour, when I got back, and saw the five calls. I raced 40 miles to get there, and line up a funeral director, to come for her, before midnight, and a new day of charges. The funeral director worked with the county crematorium, and he would deliver her ashes. I bought her urn at TJ Max home goods for $16.99. I delivered that to him the next day. My daughter and I delivered her to the mountains, where she asked to be. The state would not negotiate, and took everything. I can now see that financially, I lucked out. My current mood is that nothing is better than something. I rent, I live frugally and I watch my health. There will be no estate, from me, nor will there be cost for me. My children get a free pass. It sounds fanciful but I can be mercilessly pragmatic, when it counts.
I fell into taking care of another person who needed it, but only enough to convince her that choosing to be an invalid was bad decision on her part. She suddenly gets it and her other old lady friends have also convinced her. She has worn out her roommate caregiver. I have stepped away, knowing that I cannot, will not participate in random acts of home care anymore.
Love and duty bind us to those we care for, and the wheels of commerce grind us to a profitable pulp. All of this was before the pandemic. I can't even imagine how burned out caregivers are, these days.
posted by Oyéah at 9:13 PM on February 9, 2023 [3 favorites]
My 101 y.o. mother died at home. Hospice was covered by her medical insurance. No cost other than that.
No complaints.
posted by Repack Rider at 10:10 PM on February 9, 2023 [1 favorite]
No complaints.
posted by Repack Rider at 10:10 PM on February 9, 2023 [1 favorite]
Just so y'all know a better world is possible: my Mother had excellent end-of-life care and the ability to decide when she had enough because she was in Canada. Likewise my father is good Long Term Care heading towards his end with Parkinsons and full-blown dementia. My parent's estates are not being drained by end of life costs (in fact they are still growing). Canada's healthcare system has problems (rural areas in particular) but they are solvable/fixable and the system isn't as completely inhumane as the American one.
This is probably the most important political fight worth having in the U.S. because we all eventually die and it's going largely unfought. Strangely it is mostly Boomers screwing themselves over with some kind of delusional belief that it won't happen to them (kind of like that eldercidal pandemic response imposed primarily by boomers themselves that will eventually kill one third to one half of them).
posted by srboisvert at 3:27 AM on February 10, 2023 [6 favorites]
This is probably the most important political fight worth having in the U.S. because we all eventually die and it's going largely unfought. Strangely it is mostly Boomers screwing themselves over with some kind of delusional belief that it won't happen to them (kind of like that eldercidal pandemic response imposed primarily by boomers themselves that will eventually kill one third to one half of them).
posted by srboisvert at 3:27 AM on February 10, 2023 [6 favorites]
My extra-dystopian thought is how we could end up with a fight between for-profit hospice companies pushing people to stay alive as long (and expensively) vs possible vs for-profit euthanasia companies blanketing old-people tv channels with ads about how they should buy a euthanasia plan to save their families from debt. Thanks for coming up with that one, brain.
posted by rmd1023 at 5:38 AM on February 10, 2023 [6 favorites]
posted by rmd1023 at 5:38 AM on February 10, 2023 [6 favorites]
This is dear to my heart. My father died this week after several months of hospice care at home in the UK and with the support of the INCREDICLE Arthur Rank hospice charity.
He received the most outstanding care and he did not have to pay for any of it. I cannot express how amazing the experience was. From the doctors and nurses who did home visits and stayed as long as he needed, the people who turned up to access his home and then delivered/set up equipment like a hospital bed the same day!!, to the wonderful kind team of male nurses who came three times a day to help with washing, dressing, eating etc. It was particularly important to us that, when he did die, his body was washed and prepared by these same nurses, because they had developed such a good relationship with him in his last months.
EVERYONE should be cared for as kindly and efficiently as my Dad was, when they are dying. And, of course, when they are alive! No matter their income or race. My Dad was broke. That didn't matter one bit. Everyone deserves dignity and kindness.
The US is a absolute disgrace. We should not stand for it. We should be marching in the streets, striking, doing everything we can to demand better.
posted by EllaEm at 7:13 AM on February 10, 2023 [17 favorites]
He received the most outstanding care and he did not have to pay for any of it. I cannot express how amazing the experience was. From the doctors and nurses who did home visits and stayed as long as he needed, the people who turned up to access his home and then delivered/set up equipment like a hospital bed the same day!!, to the wonderful kind team of male nurses who came three times a day to help with washing, dressing, eating etc. It was particularly important to us that, when he did die, his body was washed and prepared by these same nurses, because they had developed such a good relationship with him in his last months.
EVERYONE should be cared for as kindly and efficiently as my Dad was, when they are dying. And, of course, when they are alive! No matter their income or race. My Dad was broke. That didn't matter one bit. Everyone deserves dignity and kindness.
The US is a absolute disgrace. We should not stand for it. We should be marching in the streets, striking, doing everything we can to demand better.
posted by EllaEm at 7:13 AM on February 10, 2023 [17 favorites]
my final wish is to die in the comfort of my Senator's front yard
I love you so much...
posted by Don Pepino at 8:48 AM on February 10, 2023 [5 favorites]
I love you so much...
posted by Don Pepino at 8:48 AM on February 10, 2023 [5 favorites]
Having read the thread, a few things to add. One, while private equity in the nursing home business is a significant problem, 89-95% of nursing homes are not owned by private equity, according to Kaiser Health News. The situation, as bad as it is, mostly has nothing to do with private equity.
Two, there is assisted suicide available to people who have some money ($15K, not $100K+) and are able to travel to Switzerland. If you feel strongly about it, I highly recommend looking into that option.
Three, the law in the U.S. is currently that all patients are "full code". That is, caregivers have an obligation (not just the option) to treat infections like pneumonia, break ribs performing CPR, call 911 for transport to the emergency room, etc. No wonder something like 50% of Medicare spending comes in the last six months of life. If you don't want that, you have to track down a doctor or social worker and get them to sign your care directive, which depends on the state. Again, the law specifically prohibits you from doing this yourself. And frankly, it is cruicial to make your explicit wishes on this known to all your next of kin, not just your power of attorney. Making appropriate end of life decisions is very hard even if all the family is on board. With conflict it's almost impossible, so you get the default, which is insane for someone with a terminal illness. So for your own sake and the sake of your family, make it crystal clear if you want palliative/comfort care. The quality of life after resucitation for an elderly person is typically very poor. But absent the care directive your provider can't just give you whatever morphine you need to treat the pain, because they could get sued, fired, or even jailed.
posted by wnissen at 10:52 AM on February 10, 2023 [5 favorites]
Two, there is assisted suicide available to people who have some money ($15K, not $100K+) and are able to travel to Switzerland. If you feel strongly about it, I highly recommend looking into that option.
Three, the law in the U.S. is currently that all patients are "full code". That is, caregivers have an obligation (not just the option) to treat infections like pneumonia, break ribs performing CPR, call 911 for transport to the emergency room, etc. No wonder something like 50% of Medicare spending comes in the last six months of life. If you don't want that, you have to track down a doctor or social worker and get them to sign your care directive, which depends on the state. Again, the law specifically prohibits you from doing this yourself. And frankly, it is cruicial to make your explicit wishes on this known to all your next of kin, not just your power of attorney. Making appropriate end of life decisions is very hard even if all the family is on board. With conflict it's almost impossible, so you get the default, which is insane for someone with a terminal illness. So for your own sake and the sake of your family, make it crystal clear if you want palliative/comfort care. The quality of life after resucitation for an elderly person is typically very poor. But absent the care directive your provider can't just give you whatever morphine you need to treat the pain, because they could get sued, fired, or even jailed.
posted by wnissen at 10:52 AM on February 10, 2023 [5 favorites]
The system isn't broken, it's just designed to benefit the wrong people. It's deliberate. And working as intended
posted by Jacen
There's a term for this that originated in systems theory: the Purpose of a System is What it Does (POSIWID).
posted by workerant at 11:03 AM on February 10, 2023 [4 favorites]
posted by Jacen
There's a term for this that originated in systems theory: the Purpose of a System is What it Does (POSIWID).
posted by workerant at 11:03 AM on February 10, 2023 [4 favorites]
I guess I'm in the minority, but I don't want to die at home and I don't care where I die. At that point, why would I care where I am? The only thing I care about is that it happens quickly when my time comes.
I think a lot of people might agree with you, in the instant of your death, perhaps a lot of people don't care where they are. The problem is when people take a long time to die- although having advance directives in place can help with some of the truly awful last minute stuff, it rarely is helpful in cases where you are not well enough to live independently but also not about to die either- few people would be willing to make broad statements about what they want in these cases because no one really understands what their quality of life would be like in these cases.
The problem is precisely these in between states, and older people can hang out in those states for a god awful amount of time. If you have the resources (money, time, family) , this time can be as comfortable and meaningful as possible. If you do not, it can be a literal hell.
posted by rene_billingsworth at 11:17 AM on February 10, 2023 [2 favorites]
I think a lot of people might agree with you, in the instant of your death, perhaps a lot of people don't care where they are. The problem is when people take a long time to die- although having advance directives in place can help with some of the truly awful last minute stuff, it rarely is helpful in cases where you are not well enough to live independently but also not about to die either- few people would be willing to make broad statements about what they want in these cases because no one really understands what their quality of life would be like in these cases.
The problem is precisely these in between states, and older people can hang out in those states for a god awful amount of time. If you have the resources (money, time, family) , this time can be as comfortable and meaningful as possible. If you do not, it can be a literal hell.
posted by rene_billingsworth at 11:17 AM on February 10, 2023 [2 favorites]
Two, there is assisted suicide available to people who have some money ($15K, not $100K+) and are able to travel to Switzerland. If you feel strongly about it, I highly recommend looking into that option.
I'm hoping they get better medical suicide laws going in this country before my time comes, I doubt I'll be able to afford a one way trip to Switzerland, especially after all the medical bills.
If you don't want that, you have to track down a doctor or social worker and get them to sign your care directive, which depends on the state. Again, the law specifically prohibits you from doing this yourself. And frankly, it is cruicial to make your explicit wishes on this known to all your next of kin, not just your power of attorney. Making appropriate end of life decisions is very hard even if all the family is on board. With conflict it's almost impossible, so you get the default, which is insane for someone with a terminal illness.
This was the issue with my dad. Supposedly he told my mom he didn't want to be kept alive on a machine, and supposedly there was even paperwork for this somewhere, but she felt differently, especially in the moment and the stress at the time, and thus he was strung out on a ventilator for most of the next 2 years. Whoever your next of kin is, they'd better agree with you on the topic or else you're fucked.
I don't know what to do about myself. I don't want to put a friend or non-relative as power of attorney because friendships change (for example, the best of my friends for this job lives in another state and in my experience you need someone on the spot right then and there) and the rest of my relatives don't care about me, so my mom is it. We've had several post-death conversations about how she understands how stringing him on was bad (plus my aunt told her she'd never let my mom make the decision about her) and how I don't want to be strung along forever, but in the moment, who the hell knows what will happen. My opinion won't matter in the moment, is all I know.
posted by jenfullmoon at 1:16 PM on February 10, 2023 [2 favorites]
I'm hoping they get better medical suicide laws going in this country before my time comes, I doubt I'll be able to afford a one way trip to Switzerland, especially after all the medical bills.
If you don't want that, you have to track down a doctor or social worker and get them to sign your care directive, which depends on the state. Again, the law specifically prohibits you from doing this yourself. And frankly, it is cruicial to make your explicit wishes on this known to all your next of kin, not just your power of attorney. Making appropriate end of life decisions is very hard even if all the family is on board. With conflict it's almost impossible, so you get the default, which is insane for someone with a terminal illness.
This was the issue with my dad. Supposedly he told my mom he didn't want to be kept alive on a machine, and supposedly there was even paperwork for this somewhere, but she felt differently, especially in the moment and the stress at the time, and thus he was strung out on a ventilator for most of the next 2 years. Whoever your next of kin is, they'd better agree with you on the topic or else you're fucked.
I don't know what to do about myself. I don't want to put a friend or non-relative as power of attorney because friendships change (for example, the best of my friends for this job lives in another state and in my experience you need someone on the spot right then and there) and the rest of my relatives don't care about me, so my mom is it. We've had several post-death conversations about how she understands how stringing him on was bad (plus my aunt told her she'd never let my mom make the decision about her) and how I don't want to be strung along forever, but in the moment, who the hell knows what will happen. My opinion won't matter in the moment, is all I know.
posted by jenfullmoon at 1:16 PM on February 10, 2023 [2 favorites]
This whole thread is so depressing and I had initially decided to ignore it. But here I am.
First of all, I have the BRCA2 gene mutation, and everyone in my family who had it died before they were 67. I'm 60 this year and I don't want to die, but death is very real in my life.
Second, I have lost a lot of dear relatives during the past twenty years, and I have a lot of experience with death. In a weird way, it makes me less fearful, but also more determined to get it right. I can't decide wether I will be afraid or in pain, but I can decide how I want to be cared for, and by whom.
Third, fuck the US health care system. It is not right. And this is why I didn't want to engage in the first place.
Finally: in my experience, hospice care is what we all need. Both the dying and their families. Universal good hospice care will eliminate the whole discussion about assisted suicide. I am not at all religious but I feel the whole concept of assisted suicide is wrong on many levels, and that if everyone had acces to proper hospice care, it would not be an issue.
Even here, where free hospice care is available (at home as well as at the hospice), it is a bit of a project to get it, and most people don't know about it, so there are still thousands who have difficult death experiences. I understand why people are scared of death - seeing your dad crying from pain till his last breath in an overlit hospital bed is just bad. But there are other ways.
posted by mumimor at 1:50 PM on February 10, 2023 [5 favorites]
First of all, I have the BRCA2 gene mutation, and everyone in my family who had it died before they were 67. I'm 60 this year and I don't want to die, but death is very real in my life.
Second, I have lost a lot of dear relatives during the past twenty years, and I have a lot of experience with death. In a weird way, it makes me less fearful, but also more determined to get it right. I can't decide wether I will be afraid or in pain, but I can decide how I want to be cared for, and by whom.
Third, fuck the US health care system. It is not right. And this is why I didn't want to engage in the first place.
Finally: in my experience, hospice care is what we all need. Both the dying and their families. Universal good hospice care will eliminate the whole discussion about assisted suicide. I am not at all religious but I feel the whole concept of assisted suicide is wrong on many levels, and that if everyone had acces to proper hospice care, it would not be an issue.
Even here, where free hospice care is available (at home as well as at the hospice), it is a bit of a project to get it, and most people don't know about it, so there are still thousands who have difficult death experiences. I understand why people are scared of death - seeing your dad crying from pain till his last breath in an overlit hospital bed is just bad. But there are other ways.
posted by mumimor at 1:50 PM on February 10, 2023 [5 favorites]
I forgot to note that hospice care here is completely different than in the US, and that everyone has the right to full leave from work if their relative needs care. For instance, I had leave from work when my gran was dying and the hospice care provided 24 hour service and all the technical stuff, like a bed delivered at her home.
posted by mumimor at 1:55 PM on February 10, 2023 [1 favorite]
posted by mumimor at 1:55 PM on February 10, 2023 [1 favorite]
The problem is when people take a long time to die- although having advance directives in place can help with some of the truly awful last minute stuff, it rarely is helpful in cases where you are not well enough to live independently but also not about to die either- few people would be willing to make broad statements about what they want in these cases because no one really understands what their quality of life would be like in these cases.
Yes, we faced this issue a few years ago with Mum. She was always adamant that she did not want to end up in an aged care home, but the time came where she could not live independently and, even after she moved into my Sister's place, she could not be alone during the day because she couldn't care for herself and had repeated falls. After being hospitalised for the nth time after falling, we convinced her to spend a little time in one on a 'respite' basis and then, once she'd made a couple of friends and realised it wasn't the kerosene-bath hell she'd imagined, convinced her that it would be best for her to stay there. The hard part was that we were lying all the way along - she was never going home and she was going to an aged care home whether she liked it or not, because it was the only way she could be safe. If she had stuck to her guns and refused, my Sister and I would have used our power of attorney but, fortunately, she agreed it was a nice place and she wanted to stay.
it is cruicial to make your explicit wishes on this known to all your next of kin, not just your power of attorney
Absolutely. It's also important to choose your power/s of attorney carefully and make sure they will carry out your wishes. My mother originally had all four of her children nominated to make end-of-life decisions, but took two of them off when she found out they were not prepared to make decisions that would shorten her life.
posted by dg at 1:51 PM on February 12, 2023
Yes, we faced this issue a few years ago with Mum. She was always adamant that she did not want to end up in an aged care home, but the time came where she could not live independently and, even after she moved into my Sister's place, she could not be alone during the day because she couldn't care for herself and had repeated falls. After being hospitalised for the nth time after falling, we convinced her to spend a little time in one on a 'respite' basis and then, once she'd made a couple of friends and realised it wasn't the kerosene-bath hell she'd imagined, convinced her that it would be best for her to stay there. The hard part was that we were lying all the way along - she was never going home and she was going to an aged care home whether she liked it or not, because it was the only way she could be safe. If she had stuck to her guns and refused, my Sister and I would have used our power of attorney but, fortunately, she agreed it was a nice place and she wanted to stay.
it is cruicial to make your explicit wishes on this known to all your next of kin, not just your power of attorney
Absolutely. It's also important to choose your power/s of attorney carefully and make sure they will carry out your wishes. My mother originally had all four of her children nominated to make end-of-life decisions, but took two of them off when she found out they were not prepared to make decisions that would shorten her life.
posted by dg at 1:51 PM on February 12, 2023
it is cruicial to make your explicit wishes on this known to all your next of kin, not just your power of attorney
Also as my family learned ...don't assume tragedies won't stack. I'm currently POA for my Dad and I was third on the list. Make sure you POAs run through the full lineage of people you trust because some might die between the time you make your will and you lose your decision making capacity. Also be aware of international issues in your wills and POA if you have people living in different countries.
posted by srboisvert at 4:19 AM on February 15, 2023
Also as my family learned ...don't assume tragedies won't stack. I'm currently POA for my Dad and I was third on the list. Make sure you POAs run through the full lineage of people you trust because some might die between the time you make your will and you lose your decision making capacity. Also be aware of international issues in your wills and POA if you have people living in different countries.
posted by srboisvert at 4:19 AM on February 15, 2023
Ask A Manager's mom is now having this issue :( Has to move into a different state to die.
posted by jenfullmoon at 11:28 AM on February 15, 2023
posted by jenfullmoon at 11:28 AM on February 15, 2023
About 10 days ago, I had to move my partner into a full-time memory care facility. He was diagnosed with early-onset Alzheimer's at 55, and by 60, it was simply no longer safe, and no longer feasible for me to provide the level of care he needed. This is a soul crushing thing. The number of times he asked whether he could just die (we live in Washington)... unfortunately, there's no current legal (or ethical) way for this to happen when the issue is mental, rather than physical. We are fortunate that 1) I am a tech worker; 2) he was as well, and there's plenty of resources to make sure he gets the best care, but the facility is almost $12,000/mo, and that's before any additional charges. We also pay for a dedicated caregiver to come in a few hours a day to go for walks, etc. We are lucky it's a very well regarded community in the Alzheimer's world, and it's close to the house. We're lucky we have resources. We are lucky the family and all are cooperative. We are lucky people don't freak out about a gay couple, and treat us completely appropriately.
Still...
Do not recommend.
posted by petrilli at 4:11 PM on February 18, 2023 [4 favorites]
Still...
Do not recommend.
posted by petrilli at 4:11 PM on February 18, 2023 [4 favorites]
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posted by lextex at 8:04 AM on February 9, 2023 [9 favorites]