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My mother is 91, and in the late/end stages of Alzheimer's. She has declined so much in the past few months that frankly we're stunned that Hospice is considering letting her go.


She's down to 88 lbs, can only manage a small amount of pureed foods spoon fed to her, and can barely talk anymore. Her hospice nurse told us that the doctor thinks she's stable enough to pull her services. We have been caring for her in our home, and have created as healthful, stress-free environment as we possibly can. She cannot manage any tasks on her own, from walking, eating, toileting, dressing, cleaning herself, etc. My husband and I assist her with all of it. She will sit on the toilet, and is rarely incontinent. It often takes her 3 or 4 trips to the toilet before she can figure out what it is she needs to do.


Many days, she cannot communicate, cannot sit up straight without pillows to prop her, won't pee for 20 hours, doesn't eat, etc. She seems to have very little reserve left. Yet, when the nurse comes, she'll answer her appropriately, smile, sit up straight, etc. But, they measure her, and her weight and inches are down. Her hospice social worker told me just 2 weeks ago after evaluating my mom that she could see the decline and not to worry, that mom would qualify. Now, yesterday, we get word that the doctor wants her out. Is there more behind this decision that just what's good for mom?


It seems that because we have kept her from falling, getting infections, or sick, they are saying she's not declining rapidly enough. We have been so grateful that at the end of her life, they would be there to help her/us through. Now, I envision a nightmare that may include her going into a hospital, which she does not want.


Can I just call another hospice company? Has anyone ever appealed their decision? Do I want to keep with the same company after an appeal?


Thanks in advance for anyone's experiences with this or thoughts.

TeamNancy

My mom was on traditional Medicare. Not Medicaid. She had HHC for many years. She qualified because she was homebound and needed intermittent skilled nursing. She had congestive heart failure. About five years ago I had the same HHC evaluate my aunt and they have provided her care since then.
She is now 92 with dementia.

A good friend of mine died last year. She was on hospice and had Alzheimer’s. She was up out of bed in June celebrating her BD and passed in July. Prob about two weeks later. She had been in hospice about seven months when she passed.
I have an aunt with Parkinson’s who has been on hospice for two years. She was bed bound when she went on hospice but is now up and about and still on hospice. I think it depends on the company and the doctor. That’s all I can surmise as their circumstances were different. No one has been taken off hospice.
Push to keep the hospice. If that doesn’t work, try for the HHC. Of course, they don’t provide the diapers etc as hospice does. Let us know how it works out.
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TeamNancy Sep 14, 2019
Thank you, 97yroldmom.

I'll consider that if Hospice doesn't work out. Her doctor is part of the Home Health system, and comes to our home every month for a checkup. I think you're right, it depends on the company. Given what we were told 6 months ago, vs what is actually happening with regard to her eligibility, we feel it might be more of a management/personnel issue. The hospice company we use has been through new management, and several new employees/nurses/aides since we started with them. I hear of many instances where people are on hospice much longer than the initial 6 months.
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TeamNancy....When they tried to take my Mother off Hospice,I appealed the decision and called The Quality Improvement Organization and told them all about Mother and the shape she was in. I was so worried and scared.Then the next morning,I got a phone call and they said that Mother had won her appeal and she remained on Hospice.
I hope you find a way to keep your Mother on Hospice too.
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TeamNancy Sep 14, 2019
Thank you, luckylu. I'll give an appeal a try if she's released from Hospice. They didn't give me an answer yesterday, so now I imagine I won't hear anything until Monday.
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88 pounds and not eating? How long has she been in hospice? If just having entered I cannot imagine her sustaining another 6 months of life. Apparently hospice can. And apparently her doctor agrees with him, as he would be the one to put the criteria in writing, that being that he expects this patient to die within 6 months.
Can you tell me how many months Mom has been in hospice? Is it that in their minds she just "timed out" or is it that they think she isn't going to be dying quickly enough?
I have a lot of problems with Hospice as it is currently done. I was there in the beginning when the models of the UK were brought to us. I have a friend lifelong working hospice, now risen to the top. It is about money now. Just like everything else. Very regulated as to who visits, for how long, in what capacity, and etc. Not surprising. It is just where we are in this country. But a bit heartbreaking for me to see.
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TeamNancy Sep 13, 2019
She weighed 102 ish when she first entered hospice 6 months ago. There have been a few times where we thought she was very near the end but then she'd rally. Her doctor is who recommended Hospice, it's the Hospice doctor that is saying she no longer qualifies. According to the Hospice nurse, the doctor said she has become stable. She's losing weight still, but slowly. She shows decline in movement, cognition, sleeping more, eating less. She walks very little and has lost core strength. She's eating just a few bites of food most days, and still drinks juices and water. Enough to keep going.
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I can't see whether you are receiving hospice services at home or in a residential facility. Anyway, hospice is not a residential facility for the elderly or a permanent ongoing visiting service for the elderly. It's role is to support people who are dying and to alleviate symptoms of dying. Dying is when you are deteriorating quickly and blood tests and other clinical features show this. If everyone stayed on hospice books, they wouldn't be able to hold the numbers! I would accept the decision and then make other arrangements, care at home through an aged care service, or place your mother in an aged care facility. I know it is very difficult because of her age, you don't expect her to live all that long. Hospice always welcomes a referral back into their service if someone deteriorates.
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TeamNancy Sep 13, 2019
She's living at home, with my husband and I. When hospice evaluated her, they felt she qualified under all their criteria. They let us know at that time that she'd be re-evaluated after 6 months and would likely re-qualify due to the decline from Alzheimer's that they expected would happen and indeed has happened. We never thought, nor used them as if they were a "permanent ongoing visiting service". We were very open about not wanting anything but comfort care for my mother, which is what they were there to provide. They were quite up front about it, and we felt confident that they'd be with my mom and us through the end of her life, no matter whether it was longer than 6 months. With the initial evaluation, it was Hospice that assured US that we'd be kept on their books. Yes, we will accept their decision and ask her doctor to help us with a referral back in to Hospice when the time is right. I don't know if you've ever tried to qualify for home health care and receive medicaid but it was a quagmire of agencies, phone calls, and people passing the buck for months, only to find out she was literally $6 over in her income to qualify. She/we would have to open a QIT and the paperwork involved and cost to do that was just too much after several months of getting the runaround with the folks at medicaid. It was extremely frustrating trying to navigate through it all, as well as take care of her physical needs all day. When hospice came on board we were extremely grateful for the help and support. She's unable to take herself to the bathroom which eliminates the senior and aging care entities and adult daycare, except for the places that charge $23 and up and hour. We aren't able to afford that.
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Coverage of hospice benefits for people with Alzheimer's disease is not clearcut because it's difficult for anyone, including physicians, to predict an individual's life expectancy. My former mother-in-law has Alzheimer's disease. She is 93. She does not smile, talk, or walk. She swallows but cannot feed herself. She has been at this stage of the illness for a few years. It is possible she could continue like this for several years. Her own mother lived to age 101 with Alzheimer's disease.
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TeamNancy Sep 13, 2019
I agree. We watch what we see as an almost daily cognitive decline with my mom, but it could be she has a long way to go before she succumbs. I think she's physically fairly healthy, though this disease is taking a tole on her physical health now. There aren't any other known diseases or problems.
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Ask her doctor to order home health care for her. A nurse will come at least once a week and an aide can come at least twice a week to bath her. You could also ask for therapy.
Call your existing hospice ( if you are happy with them) and see if they have a hospice division. It’s usually a different group of nurses than work hospice.
If they don’t have both, look for an alternate hospice that does have home health.
They all have to have a doctors order to provide services.
Hopefully you won’t have to change anything.
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TeamNancy Sep 13, 2019
Her hospice nurse comes once a week and we had to discontinue the aide because it was creating so much stress for mom to have a stranger bathing her. If we do indeed get booted from Hospice, I'll see if she can get home health. She's not on Medicaid, and that may be a problem for that service. She was $6 over the income to qualify and would have needed an account to "spend down" that $6. It cost hundreds to set it up with an elder atty. It just seemed like too much trouble, especially since Hospice took care of everything she needed and Hospice is all covered by Medicare.
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You don’t have to be actively dying to qualify for hospice. You have to have a life limiting condition with a life expectancy of 6 months or less if the disease runs its course.
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Reply to worriedinCali
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TeamNancy Sep 13, 2019
She initially qualified for the care, and now that the 6 months is up, she may not qualify for another 2 months . They re-evaluate every 2 months or so.
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The challenge is that you have to be actively dying to qualify for hospice. That is such a difficult situation. The hospice doctors are reading charts, could you ask the social worker to discuss the case with the doctor?

Just because she is released from hospice doesn't mean that she can't qualify again if she takes a turn for the worse.

Being stable is a valid reason for removing her from hospice services. She is old and frail but not actively dying from an illness.

Unfortunatly hospice is being used as in home health care and Medicare is starting to crack down on them. They have to justify keeping someone on hospice and the rules don't always make sense or apply fairly to individual situations.
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TeamNancy Sep 13, 2019
I think this is the issue. I've asked the social worker to advocate for keeping her on, and am still waiting for the reply. I was told they'd let me know today. I think that "on paper" she does look stable, but this isn't what we see on a daily/hourly basis.
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You need to speak with her doctor. It doesn’t sound like it’s the hospice company that is the problem. And actually the hospice company should probably be advocating to keep your mom ON hospice. Considering her age and her diagnosis, it shouldn’t matter if she’s stabilized. I would first to get hospice to fight this with moms doctor and see if you can talk to the doctor yourself. I don’t think you can just call another hospice company and keep her on hospice? J think she’ll need the doctor to refer her for hospice.
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TeamNancy Sep 13, 2019
It's her hospice doctor that's claiming she's stable enough to be dropped from the program. I may be able to get her own doctor on board with recommending Hospice again, and could then go with another company. I think I can call any hospice to come and evaluate, but I could be wrong. The nurse said she'd try to convince the doctor that she should remain in the program but she didn't sound too convincing to us. We'll see.
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