"Hoping to Die at Home"

This is a good (but depressing) piece that uses some typical end of life tragedies to demonstrate how the financial decks are stacked against sensible end of life care. Medicaid, in particular, is structured to push people into rehab centers and nursing homes which end up exacerbating the old folks' problems while extending their final days. The article cites a NYT article about a National Academy of Science funded funded report on recommended changes to end of life care. The report itself is behind a pay wall. Absent legislation (good luck with the polarized Hill) the problems will just get worse as us boomers plug up the system. This is why I opted for LTC policies for DW and myself.
 
Talk about dying at home........ last week there was a woman in the town next to us who passed at age 93 in the same room that she was born in on the family farm.

For those who think that she may have been a farm recluse, nothing could be further from the truth.... she was a fixture in the community and served in the state legislature. And her 9 children and 4 step-children are carrying on the torch.
 
The article was nothing but depressing. Just can't think of anything else to add.
 
Wonder what hiring one's own, personal, in-home care would cost (instead of depending on spotty, mediocre help paid for by insurance)? Maybe that is what we should be continuing to LBOM in retirement for!

Amethyst
 
I've known 3 folks that chose to die at home. One was a prominent DR. could have gone anywhere. Hospice came in for palative care. IIRC, all 3 had family to care for them, aided by the proper help. In these cases death was quick(few weeks to 2 months).

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Very sad, sad commentary on how pathetically inadequate the "system" (and most of society") has become about dealing with end-of-life care, and death in general. In my experience, very few have the perspective, devotion, and energy that this woman had in her heart to fight for her father's dying wish.
 
Every elderly person and patients with a life threatening condition should be aware of National POLST

I too would like to die at home but only if my caretakers have adequate assistance.
 
In the past few years a number of home-care companies have opened up in our town. I think they are partly doing so to provide care now, paid directly by the patient, but also partly positioning themselves for future changes in how Medicaid subsidizes home care vs more expensive nursing home care.

The care provided in the NYT story is such a mess in many ways. Sad.
 
Amethyst said:
Wonder what hiring one's own, personal, in-home care would cost (instead of depending on spotty, mediocre help paid for by insurance)? Maybe that is what we should be continuing to LBOM in retirement for!

Amethyst
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The 93 year old lady living next door to me is getting just that and according to her son, its about $20/hour. She is getting 24 hour care daily as we see the different cars/aids change shifts in the late afternoon. Very expensive.
 
Humm, that is about half what my LTC pays. If they are paying the caregivers directly add Social Security and Medicare taxes to that $20.
 
Bestwifeever said:
........snip.....

The care provided in the NYT story is such a mess in many ways. Sad.
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I couldn't agree more, just plain not right. I guess if I look at my DM's passing she was first sent to a nursing home in FL. They probably would not have allowed her to leave, as she couldn't do 2 ELFs. Luckily, I guess, she passed 6 months later. The 3 people I knew that choose home care, the social workers never got involved with until hospice was involved. In their cases each had aggressive cancer so it was quick.

I really believe how we pass is a family decision not an agency. I live my life pretty much how I choose, I feel it's my right to pass the same way.
 
My mother is 85 years old and has been receiving 24x7 in home care for about 4 years now. It has its own set of problems: for $17.50/hour she receives naive young people, who often have had no experience caring for older people. The firm shows little interest in supervising it's employees and seems to have little interest in understanding Mom's health issues or cares, or of making sure any of us kids who live out of town, have enough information to know she's receiving adequate care. There are more issues but I'll stop for now....

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pumpkineater said:
My mother is 85 years old and has been receiving 24x7 in home care for about 4 years now. It has its own set of problems: for $17.50/hour she receives naive young people, who often have had no experience caring for older people. The firm shows little interest in supervising it's employees and seems to have little interest in understanding Mom's health issues or cares, or of making sure any of us kids who live out of town, have enough information to know she's receiving adequate care. There are more issues but I'll stop for now....

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I can relate. DF was in assisted living his last year. The day shift workers said he was a joy to be around. My sister visited almost daily, she thought he got good care. We checked he wasn't sundowning.

The night shift was a different story. Their story was he was an abusive, mean person. That didn't fit his first 95 years of life. After his death one of the day shift persons apologized to sister for the actions of the night shift staff. They(night shift) get paid little and care less. It's sad that even with almost daily visits there were still questions of the quality of care.




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How can a nursing home refuse to discharge a resident?
 
Agree with others .. a sad, sobering read ... but indeed what we have seen in the recent past with DM's passing in 2012.

She declined treatment, opted for home hospice, etc and I was POA (DD passed in 1990 and I am an only child). Ended up costing right about $2100 a week for 24 hour skilled care in home (in shifts 3x8 shifts). $12.50 per hour x 168 hours per week of coverage (24x7) (rural area of Mid-Atlantic state) as DW and I live 2500 miles away. Fortunate that DM had plenty of cash and that we were not planning on or relying on anything from DM financially. Also good that it only went on a few weeks (b/c DM was hurting not because of the $$). The hospice Co/Medicare/Medicaid and her primary doc worked well together -- but I hate to say I think it was the exception rather than the rule.

In hindsight, I will say that allowing her to die at home was very important to her once she had decided she had had enough. And DW and I are proud we could honor her wish in that way and preserve what remained of her dignity to the end. A wake-up call for all of our family, for sure, in tems of how hard it is to actually get that to happen even when the person in question is lucid, clear and firm in her decision-making as well as the costs.
 
Brat said:
How can a nursing home refuse to discharge a resident?
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I don't think it's the home, but assigned social workers. I know in DM's case she could change facilities, but home was not an option.

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Amethyst said:
Wonder what hiring one's own, personal, in-home care would cost (instead of depending on spotty, mediocre help paid for by insurance)? Maybe that is what we should be continuing to LBOM in retirement for!

Amethyst
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It costs my aunt $13 an hour for a home care helper she found on her own to take care of my 86-year old uncle with Alzheimer's and a host of health issues. The wonderful woman is there 5 nights a week from 10pm to 10am. If working through an agency, my aunt was quoted anywhere from $16 to $25 an hour. My aunt also has another helper a few days a week so she can do errands and get out of the house.

They did get a hospital-like bed and one of those chair-gizmos to take him up and down the stairs for free from the VA.
 
Amethyst said:
Wonder what hiring one's own, personal, in-home care would cost (instead of depending on spotty, mediocre help paid for by insurance)? Maybe that is what we should be continuing to LBOM in retirement for!

Amethyst
Click to expand...

I looked into this about a year ago. Thru an agency, $300/ day, in metro LA, all costs. The agency would do this with 2 paid 8 hour shifts, and one shift covered by an off duty caregiver sleeping, but also paid to be on call, on site, during the 3rd shift. The normal rate was about $20 hr for part time thru this agency.

If I had any Idea how little time Dad had left , I would have done this. If our souls meet up in an afterlife, I will have to answer for failing to get better care for him :(
 
Yes it is depressing, but also too close to home.

Dad was recently hospitalized. It was very difficult to get him out of there. He went for what I believe should have been 1 day, to stabilize his hydration. But instead he spent 4 days there because he mentioned he had sore jaw. For this, they put him through a raft of unnecessary cardiac tests.

Ridiculous, because even if he had cardiac issues, he would not be getting treatment anyway.

I tell you, they suck money out of the system.
 
JoeWras said:
Yes it is depressing, but also too close to home.

Dad was recently hospitalized. It was very difficult to get him out of there. He went for what I believe should have been 1 day, to stabilize his hydration. But instead he spent 4 days there because he mentioned he had sore jaw. For this, they put him through a raft of unnecessary cardiac tests.

Ridiculous, because even if he had cardiac issues, he would not be getting treatment anyway.

I tell you, they suck money out of the system.
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Or maybe just defensive medicine at its worst. Every little complaint must be FULLY worked up to avoid being accused of malpractice. Common sense seems to have no place in this suit-happy society.
 
My mother died last year, two years into a battle with multiple degenerative brain diseases (ALS, frontotemporal dementia). Dad had LTC, which thankfully covered what ended up being 10 hrs of home health care a day (though he used less on weekends). She didn't need *nursing* until about the last week of her life, and we made very very very clear from the beginning that there would be no heroic measures, and no feeding tube. We got hospice involved at a point that we thought was too early, but she died six weeks later, at home, having never once gone into a hospital or facility.

I had done my research, and knew what we were dealing with (and that there wasn't the slightest bit of hope that she'd ever get better), so it was easy for me to stick to my guns, even as my dad wavered. But families who are hit with a parent's medical emergency, or who don't feel sure of their position, can unfortunately end up really being pushed by doctors and hospitals. Thankfully Mom's doctor was in total agreement with our decisions.

But it all sure makes you hope you just wake up and find yourself dead one morning, as she used to say.
 
My grandmother died about 2 years ago in the home. She was in hospice and it worked out very well...it was where she wanted to die.

It was covered through Medicare and in the end was a lifesaver for my grand father. One of the funny things about it (if there's anything funny about it) is that she died exactly 365 days after being admitted to hospice...the total time that's covered by Medicare. We have said that she certainly got her money's worth and if you knew how incredibly frugal she was, you'd get a chuckle out of it too.

Sent from my mobile device so please excuse grammatical errors. :)
 
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