My dad was similar — too stubborn to let go, too intent in death as he was in life, on doing something. The hospice nurse reminded us that the disorientation and pain from the toxicity building up in his body was not as visible as obvious pain, but was no less distressing and painful for him. That the morphine as a constant dose was necessary to keep him from rising and falling through the pain, and that was what we wanted for him.
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Has anyone read this yet? It’s so dispiriting.
Gift link:
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Not as bad as having an 18-year-old diagnosed with schizophrenia. 
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Well, that was depressing.
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Oh, actually, I gifted like a secondary story.
Just found the bigger one:
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I am so sorry that you went through this. It made an awful situation worse.
For those who live in an area with more than one hospice, please don’t hesitate to contact other hospices if you aren’t happy with the initial hospice. In our case, H & SIL were unhappy with several things, including medication management. The second hospice they chose was so much better for our family. If the initial hospice says that the patient doesn’t qualify, it’s possible that other agencies will agree. But they might not. People probably don’t really consider hospice shopping, but if there are other options - I realize that sometimes there aren’t - it is okay to do it.
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Our local paper had all of the three NYT articles. Sorry, can’t gift a link.
https://www.seattletimes.com/business/facing-financial-ruin-as-costs-soar-for-elder-care/
https://www.seattletimes.com/business/i-wish-i-had-known-that-no-one-was-going-to-help-me/
https://www.seattletimes.com/business/what-long-term-care-looks-like-around-the-world/
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Yes we has one hospice say no, and one hospice say yes. I think the one that said yes had a lot more money and staff. They were pretty loose about qualifying. Huge organization. The hospice that said no offered palliative care and “bridge to hospice,” two other levels of care that only had one NP visit a month. We used both hospices over the years. The one that said yes has a hospice house- beautiful place- where almost everyone around her goes to die. My mother’s last words were “It’s beautiful here, can I live her?” and I said “Sure you can.” Then the morphine.
Your situation is very different, and I don’t think they can be compared.
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Both stories are very dispiriting. The nation still relies on family members stepping up. In the examples, it was always one child. Were there no siblings in any of these families?
In my situation, my brother took care of my mom - from 10 miles away, visiting every day - and when she started with the falls and inability to care for herself, he put her in ALF and she had a stroke within two weeks.
By the time my dad’s cancer became terminal, my brother would no longer speak to me (politics) and so I’m essentially an only child on this issue. Which is fine; it was my turn to step up anyway. Though he never would’ve done what we’ve done (take him in and reorder our lives).
I assume there are a lot of family dysfunctions. A lot of faraway children. A lot of “we can’t afford it.”
But also a lot of “I can’t/won’t deal with this,” for whatever reason.
It’s a serious demographic cliff, and the boomers have a decade to go, give or take, just entering the beginning of retirement, let alone dying.
Just in the fact that families are not supported the way they should be. And when you have a kid who falls ill, it’s many, many years of frustration.
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I’m 75 and I lost two contemporaries this month.
no gift links left, sorry.
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This is what basically ate up all of my father’s money (he ran through like $1million in a few years.) The cost of having a “comfort aide” in his room for 10 hours a day was significantly more than the cost of his room and board. The comfort aide was not a nurse and could not do anything medical (they wouldn’t even let the aide help him get out of bed, get dressed, or take a shower). Every time my father’s condition worsened and he was reevaluated, they would up the cost as he needed a new level of care. His new place, a skilled nursing facility, takes better care of him (for less - but now that he has no money the government is footing the bill). At the assisted living facility, any time he had a slight fever or low oxygen level, they shuffled him off to the ER as they were not equipped to handle these types of medical issues. In the nursing home, they don’t bat an eye, fever, low oxygen, they call in a doctor and take care of it right there.
Yes, the private duty aide/nurse costs are crazy high, and sometimes needed even at facilities. I recommend that people choose facilities where if the money runs out and the person needs to be on Medicaid, that they can stay and don’t have to move.
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It’s grim. My folks bought long term care insurance when they were in their 60’s, a policy that covers all costs at a care facility of their choice. Paid about $5K/yr to cover them both.
When the time came, the company said they no longer issued policies like this (now, it’s a monthly maximum payout that covers maybe 20% of the cost) and would not honor the contract. My sib threatened them with legal action and so the insurance did payit all – but as a reimbursement of the $15000 my mom had paid for Dad’s 6 week hospice care. Imagine if you have not saved up for this eventuality? His hospice was $6000 month bc it is heavily endowed. The only local AL facility is $11K a month and hospice is just a service for the care wing. (When we toured it months earlier the RN casually said “we have a few hospice patients, I guess their families didn’t want to deal with it so they just leave them here to die”)
My inlaws are in total denial. I know one or the other of them will end up with us for at least some period of time bc they have no plan at all and they think you just hire an aide for $15 hr to help out. That’s fine with us, but it surely will be a shock to them.
End of life care is VERY costly. We paid about $30/hr, 24/7 for mom’s companions. They didn’t have medical training but helped toilet her, give her a shower, prepare and set her breakfast, take her down to select her lunch and dinner from casual dining, serve her lunch, reheat her dinner, have her take her 2 meds and keep her company, plus help wash laundry as needed.
When she was discharged after hospitalization, she required skilled nursing but no longer had the companions because brother decided she would be ok with just their staff (& save $$$). She died before the 90 days of Medicare skilled nursing ended. At that time, we were paying rent on her independent living unit, because brother was convinced she’d return there. It all added up to a lot of $$$.
Does anyone think anything will change before we need this kind of care?
Because we don’t have LTD or anything like it. We don’t have millions in funds - just generic middle-class 401k that won’t cover much of anything; certainly not $6 or $10k monthly ALFs/skilled nursing.
We always say, we’ll never put our kids through what our parents have put us through. But how on earth do you NOT?
ETA - The other elephant in the room: Millennials and GenZ who might have been looking forward to some of the last remaining solid inheritances out there (because they’re not able to save anything with the brutal cost of living these days) will not see a dime of these inheritances because their parents will be bled dry in order to “live” in their last years.
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It’s so hard to know, whether one will die quickly and be pretty functional until maybe last day or month or need years of a lot of care/companionship. It’s clear to me as someone who spent significant amounts of time with my folks in the last years of their lives, there can be a lot of decline and a lot of needs before one is ready to leave this Earth. How it’s provided can be very labor intensive—whether it’s family, hired help or maybe even some robots?
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