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.
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.
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.
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.
I hope you find a way to keep your Mother on Hospice too.
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.
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.