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THretired Asked November 2020

Can a person be on hospice for years?

Three weeks ago I moved my dad to memory care. He was falling at home a lot. He was also confused as to where his home was located and tried to walk down the road. I had 24 hour care during Covid but now funds are running out. He could walk with a walker with help when he first arrived at memory care with baby steps. Now after four falls that have caused a black eye, bruised ribs, two hospital visits, three staples in back of head and now a broken arm, he cannot pull himself up from bed or walk. But he is his normal dementia self when awake. When pain and depression meds are given he sits in his wheel chair with his head hanging down. Not talking.
He is too doped up.
Facility offered hospice evaluation but he is not terminal. They would just add care for him. And told me that some residents have been on hospice for years. Please help me understand. I don’t want them to dope him up to not have to mess with him.
I don’t know what to do.

luckylu Nov 2020
Mother's doctor suggested Hospice to me one day at an appointment Mother had and I told him I thought it was only for people that were dying and he said no,that he just thought it would be good to get me some extra help.
So Mother was placed on Hospice July 12,2012 and remained on it till she died 3 and a half years later on 12/27/2015
I was grateful for their help and the supplies they brought and most especially the oxygen Mother needed.A Nurse came 3 times a week and a bathaid too and they delivered Mother's medicine and they had a social worker and a Chaplain that came every couple of weeks also.
Mother set a record with her Hospice company for being on their service so long.She was a real fighter.
Mother's doctor told me after she died,that he believed she had about 6 months to live when he had her placed on Hospice,but God had His own perfect timing,so yeah,people do stay on Hospice for years sometimes.
I'm so sorry that your dear Father is having all those falls and problems he's having.
Hospice would probably be a good idea so you both could get some extra help.
Take careTHretired~

AlvaDeer Nov 2020
You will have to know going in that once on hospice you do not accept treatment in hope of cure. That is there would be little testing and treatment. Of course anything that causes pain, distress, such as pneumonia, UTI, would be assessed with testing and xray and treated, because this does come under comfort care. But basically when you opt for hospice you are opting for Palliative care only and you should look this up. It does require a doctor to say he does not, in his professional opinion, expect this patient to live longer than 6 months. Often the doctor will fudge a bit. Then if hospice 6 months passes and patient is still alive, the hospice is re evaluated. Patient better? Likely will remove hospice. Worse? Will likely keep hospice.
When hospice is interviewed (and family should/would be included) I feel you should make it clear you are not now wanting the "good drugs", and an ushering out "the easy way". That you wish only the extra caring support, no unnecessary administration of morphine and other drugs.
You are now saying no to dialysis, no to artificial feedings and no to a whole lot else.
I would want you to use your search engine now to look up Palliative Care and Hospice Care and rules. This is a lot of extra supporting care to you and your family and the one you love, but you must understand it before agreeing to it. Wishing you the best of luck. Hoping you will update us.
97yroldmom Nov 2020
Alva
Im not sure If this is a state by state situation with Medicare, (I don’t think so), but my aunt can and will continue to see her primary doc for her other issues. Only her dementia meds are covered by hospice unless I choose to use the hospice doc for other services. With today’s ease of Telemed appointments, it’s really easy to see the primary. No plan to stop.
I agree TH should do her own research. I was answering her questions with my own personal experience.
If her dad needed to go to the ER for some other reason, let’s say Covid, he can go off and on hospice without a problem. In fact my uncle. On hospice, went into the hospital twice with Covid in July, then right back on hospice when he came home.
Not everyone’s experience is the same and of course, it’s always good to interview more than one company.

I’ve been looking into ALF for my DH aunt and they have more than one hospice and/or HH agency that come in, Chosen by the family, not the ALF. The ALF likes it because they have more help for the patient but they don’t require it.

And If my DH aunt needed dialysis, artificial feeding or any other thing that I wanted her to have, I would just go off hospice. It doesn’t have to be a forever decision. Usually is, but doesn’t have to be. At 94 and with dementia. I doubt her doctor would recommend those things and she has it in her records not to intervene but it would not be withheld simply because she is on hospice.

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97yroldmom Nov 2020
Yes. My aunt has been on hospice three years this fall. She has Parkinson’s and LBD. She is not doped up.
I think the only pharmacy Med she takes is for the Parkinson’s.
She does take quiet a few supplements including CBD oil, uses essential oils, music therapy. Any and all the things that seem to enhance her quality of life.
My DH aunt has been on hospice about 6 weeks now. She is receiving more baths than she was eligible for on home health. They also provide her dementia meds including her antidepressant and recently treated her for a UTI that in hind-site I think had been pulling her down for awhile. I know you don’t want your dad in pain. Better a bit dopey than in pain but with hospice he will have another layer of caretakers that might be able to find a better pharmacy combo than what he is receiving now.
You can always stop the hospice. I encourage you to give it a try. Let us know how he is doing. We learn from one another.

funkygrandma59 Nov 2020
First I would talk to the Dr at the facility he is at about the dosages of his pain and depression medications that he's on there, and get them changed, as it does sound like he is "too doped up".

Then you can proceed with a hospice evaluation if you want to. It certainly can't hurt. It will be extra eyes on him while he's in MC. My husband was under hospice care in our home for 22 months before he just recently passed, so as you can see, just because he would be under their care, doesn't mean that he would be dead in their 6 month window.

I guess my only concern about being under hospice care in a facility would be that once under their care, it's my understanding that the facility would no longer have their aides bathe him, as he would have to wait for the hospice aides to come, and they usually only come twice a week. If he would need to bathed more than that, I'm not sure how that works. You might want to double check with his facility to make sure that they aren't going to diminish their care just because hospice is now involved. I have heard stories where that was the case. Just make sure you have all "your ducks in a row", before you make any final decisions.

sjplegacy Nov 2020
I don't know what his "normal" dementia self is but it is never too early to have someone evaluated for hospice. Your dad doesn't have to be terminal to recieve hospice care. Don't worry about the 6 month rule. At some point dementia patients will qualify for hospice. Apply now. And yes, people can be on hospice care for well over a year.

NeedHelpWithMom Nov 2020
My brother was on hospice for well over a year. So, take advantage of using hospice if it is an option. They provide comfort to the patient and the family. They will also provide a social worker and clergy.

igloo572 Nov 2020
id get the hospice evaluation done. It’s pretty through and it’s a MediCARE benefit, so should be no cost for your dad if he’s on Medicare and the hospice group is on Medicare. It’s a good assessment to have.

my mom was on hospice for 18 months at her NH. Being hospice certified doesn’t mean dead in set time; it’s more anticipated death in 6 months or less. They get evaluated every few weeks for renewal. It is not automatic.

What I’ve found that is that for facilities, especially if they have Medicaid beds and staffing issues, really like having residents on hospice as hospice provides for extra hands 2-3 maybe 4 days a week to help with care. For bathing, having hospice there is a big big help. Ditto for changing thier clothing and bedding. plus hospice can bring in specialized equipment, like pneumatic mattress and beds, so they don’t get bed sores as easy. They sleep better, so get rest are happier.

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