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Just an observation, not a bone of contention or anything. But there are different reasons that any of us might be in the caregiving position for elders, and there are different solutions (if any...). For instance, my father has a three-month diagnosis for pancreatic/liver cancer. He was living alone in a tiny trailer, had a hospice visit once a week, and was admitting to constantly falling. My sister didn't feel she could care for him in her apartment, besides that she has to work (as do many of the caregivers, I know). Because he has a terminal diagnosis, and because my sister and I really worked hard with the hospice service, he entered a long-term care facility that has about 18 hospice patients (among one floor for dementia, one for rehab, and a generic floor for neuro/senior and hospice people. At present, he requires little hands-on care, but is getting pain medication finally and assist in getting around without falling. It was very fortunate to find this place with the hospice designation, Medicare and my sister putting him in for Medicaid. (It is an understatement to say he has no assets- his trailer is in fact a liability. We almost had to pay some $2k to have it removed from the park, but the park owner decided to take it off our hands to possibly rehab it and try to sell it for maybe $2k. That's right, a place to live in a nice suburb (edge of it, but still...) for $2k. I really hope someone who is down on their luck and feeling they will never have a place to live finds their way to this modest tiny place).
Anyway, it was an eye-opener to see how payment options/Medicare/Medicaid and diagnosis and bed availability and such matter, and when people are not at their calm logical best in deciding... Everyone told us how unusual my sister, father and me are in all agreeing on what should happen, what is best, and what the goal is (a safe place to live under care while having a peaceful and un-painful death).
Before the Medicaid question came up (my father didn't have it), I offered to pay out of pocket for some hospice placement, and there wasn't a place to do so. One nursing home wanted 18 months of payment up front to take him (with a three-month prognosis!). I realize places have been burned for big money, I do, but that didn't help us much.
There was a free-standing hospice that would take him right away for free. It's a Catholic place with a great reputation, full of nuns and priests and crosses (my father is a Jewish Zionist!) and in a terrible neighborhood in Philly, which would be a dangerous visit for my sister or me. If he had to, that would have been it, but I was very grateful for the work done to get him into the place where he is. The hospice service had a working relationship with a few long-term care places, which would take someone recommended by the hospice service if "Medicaid pending."
Even though I work in the field, I am re-taken aback by the complexity of the funding business, and the impossibility of individual people taking care of someone with terminal illness. Add dementia, and my heart breaks for all of you.
When I return to my job, where I often work on an end-stage dementia service, I will look at my patients with fresh eyes. I have always been professional and I hope kind, but it will remind me afresh that every person is someone else's loved person.
Thanks for listening.
Also consider the complexities of other situations. Being forced to care for a long-estranged parent. Being a caregiver to more than one person at a time. Caregiving for a spouse, especially if there are children in the home. Caregiving when you yourself need medical treatment.
Yes, there are many forms of situations where caregiving comes up. I just thought the discussion seemed to be leaning towards seniors with dementia.
A co-worker of mine, 70, has a 24-year-old autistic daughter, and I keep wondering what he's got planned for her supervision when he's gone. There are so many situations and we all need support and information. I'm glad this forum is started.
The willing caregivers like nurses and home aides generally like people and like to help others. the truth is most of us are reluctantly thrust headlong into death. Some of us have short journeys whereas others like myself have had a much longer time to prepare, and a more arduous trip.
Is it better to have one week with a loved one who is desperately sick, and in excruciating pain, or is it better to stay the course until the end and watch death come a day at a time -- when pain and suffering is absent and there is some quality of life left?
The answer is there is no better. We all agree we are glad the suffering is over, and we all wish the person we loved lived a longer live without the pain, suffering, the struggle to breath, the medicines and the medical equipment at home, etc..
We are born to die. Where is your Rabbi? Perhaps he can comfort you and your sister.
I don't think Medicare pays for more that 180 days in a nursing home, but there is a caveat. I don't remember what it is because it was not an option for us. 2-brother-in-law and 2-sister-in-law died in hospitals, 2-brother-in-laws died at home, the mother-in-law died in a nursing home. The five left, are over 80-yrs old and in various stages of age related health issues. I live 50 -150 miles away and I feel guilty.
My father is adamant that he doesn't want a rabbi or any chaplain or any such. He is at peace at being at the end of life and I am OK with him being there. Have always known I'd miss him (and my two other seniors who are old and reaching the end) and I'll miss them. I guess death just isn't a huge issue with me, but suffering is, so I am very glad my father is getting proper hospice care in a facililty with staff, etc. He apparently has mets CA to the bone and that is the source of the pain that he is being treated for. He's actually gained a few pounds since being in the facility and eating stuff my sister makes for him (but does not want to "prolong things.") I'd say with mets of node, bone, pancreas and liver, there's not much chance he'll prolong things. He's 87 and has been very healthy until May and is ready to be finished. He had a three-month prognosis, and unlikely to go much further than that. The whole Medicare/Medcaid hospice criterion stuff is complex.
Medicare only pays for approx. 100 days in a nursing home under "normal" circumstances.
Actually, they pay fully for about the first 30, then after that medicare only pays for a percentage (perhaps 1/3?) of the daily fees.
That's where thank god my parents had medi-gap plans - comes in. The medi-gap plans (Supplemental medicare insurance) will cover a percentage of that copay from day 30-100. (not sure of acutal days, might be day 24 to 100.. or whatever).
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Hospice. Medicare's hospice benefits are much more generous. I am not sure about in-facility care, though I think even then it is pretty decent. But I know at home care -- once hospice is certified, its very helpful. Aides/attendants, equipment, etc..
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Medicaid - pays for nursing home care.
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Always shocked me that techincally, you're better off broke in old age, if you have health problems.
In our city, there is at least one separate hospice facility built just for that purpose. It is next door to a large hospital. It has less the hospital look and supports the family and friends too. Knew a young man, 37, who had end stage cancer and that is where he spent his last few weeks. They were wonderful. Our city has 1 million people so it can support a variety of medical facilities.
I may be wrong, it could have recently changed, but Medicare pays only if the partient goes directly from the hospital to a nursing home. Patient goes home first, that's it. No payment.
This is a good reason to know ahead of time which NHs are suitable and which are not. Wailting until the last minute can be a disaster.
Yes - I think you're right.. they have to be admitted to a hopsital (that's a key thing -- hospitals are now holding people for "observation" without admitting them, and that kills they're chance at Rehab/Nursing Home eligibility) .. and I think they have to stay at the hospital (while admitted) for 3 days.
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