Please any advice appreciated re: hospice coverage. What can I do?

To be on hospice care for chronic debility won't work. A year and one half is already extended out one year past what hospice is supposed to be fore. Hospice is for patients who, in the professional MD opinion, has fewer than 6 months of life left. That isn't the case for your Mom. I am so sorry, but I doubt there is much you can do about this. Chronic arthritis just isn't a death sentence, and they have already milked this out longer than is usually allowed. I am surprised that Medicare, which fully covers hospice costs, has allowed another agency to pick up where one left off. I am afraid if this is "caught" the care will be removed again. I hope not, but I fear it may. Just so you are prepared if this happens.
I hope you will continue to keep your care.

**ANOTHER UPDATE**
Another hospice company has taken my mother under their care. We signed paperwork yesterday.

I’m so sorry you are going through this and having your appeals denied. You can likely find a hospice or palliative care group to come in and see her but MediCARE won’t cover it, as her appeals have been exhausted. It will be private pay. If her MD said this rather blithely to you, he is clueless on the cost of private pay hospice services.

this is going to sound harsh, but I think you need to step back and do a hard evaluation of the situation for you and your mom. Can you realistically continue to care for her physically on your own? She’s sounds bedfast, is that right? Like she cannot work with you in doing transitioning from bed to a geri chair on those days you need to change linens; cannot help you when she needs to roll forward so you can change her; cannot raise her arms or sort of hold them up when you need to change clothing or clean underarms. If they are dead weight, they need a team to do bathing, hygiene, linen replacement, etc. My mom was totally bedfast and it was a 3 person bathing team and 2 person team for anything done when she was in the bed & my mom was teeny tiny petite so could be pretty easily lifted up and transitioned into a geri chair or geri bathing chair. And mom still had some upper body strength, she was bedfast due to hip shatter from a fall at NH. Between the NH staff & 2-3 x a week hospice, they worked together to get things done. Plus hospice worked with dietary at the NH to get her food mechanized and ordered special liquid nutritionals for sedentary patients. There was no way this could be done at home solo by a single family member. I think it’s time for you to consider having her move into a facility with 24/7 oversight and large staff. Believe me, they will figure out how to work her health chart to establish shes eligible for Medicare hospice benefit as NH will want the extra hands that hospice provides.
Have you looked into NH for her? Will her MD write orders for skilled nursing care needed?

The vendors tend to be relentless on getting back their equipment. If you want to keep the equipment, call then to see what type of deal they might want to do.

You could try another Hospice but they go by the same criteria that Medicare allows.

You will need to allow the agency to come for their equipment. Medicare is no longer paying the bill. Maybe you can continue with the service by paying for it out of pocket. Or, check with her doctor and see if he will write and order saying she needs the equipment. Then maybe you can get the items thru Medicare or from her supplimental insurance. Or, one or the other will pay for rental.

***Update***
My mother did get taken off hospice even after filing two appeals. I was told by her PCP that another hospice company may take her on. Has anybody had any experience with this? Kinda overwhelmed right now. Medical supply company keeps calling wanting to pick up her equipment which includes her bed, air mattress, etc

Hospice services don’t increase. You won’t ever get more hands on care through hospice. What she needs is either more home health care or to be placed in a facility. If she requires more care, that’s not something hospice provides. You need to either hire caregivers, apply for Medicaid & see if they will provide home care or place her in a facility if her needs are too much for you alone.

You can contact another Hospice if you would like.
Medicare does have criteria for recertification.
As long as the person continues to decline they can remain on Hospice. If your mom has not declined but has remained consistent then she can be removed from Hospice. She could continue with Palliative Care.
But is it possible that all her declines have not been documented properly? If that is the case would they review the reason for discharge? It might be worth asking.
I maintained a log daily of my Husbands day. I included any little things that might have made a difference. He continued to decline, was on Hospice for almost 3 years.
If your current Hospice will not review the discharge you can check with another Hospice.

Your Mom, sadly, may have to go into care. Hospice care is covered by medicare irregardless of supplemental insurance, et al. It is covered for people that a doctor has reason to judge will pass within 6 months, or perhaps a bit more. Most people apply for hospice too late and pass within days; my bro had time only for the hospital bed to be delivered before he died. But some few outlive the best guessed expectations of an experienced doctor. Hospice will often apply for and get another 6 months. That you have a year and one half is somewhat miraculous, so they tried hard, but now the federal government is in a position of saying "You said you needed us for 6 months and we gave you that; you wanted another 6 and then another and we gave you that; but now we don't think this patient was/is dying".
I am afraid you now need to discuss with hospice how to move you Mom to inpatient care with SNF or Nursing home. I am so sorry. I don't know if this decision can be appealed; hospice can answer your questions about that.

My experience with hospice really didn't have them doing much in the way of every day caregiving. The nurse normally just comes once a week to check vitals, and an aide will come a couple times a week to bathe the person under their care. That still leaves 99.9% of the care on you. But the big thing they do do, is supply all the needed equipment(hospital bed, diapers, chucks, creams etc.), along with all needed medications, which is all covered 100% under Medicare. So that now will all be on your mom or you to have to pay for. If it were me I would call another hospice agency in your area(there's always more than one)to see if they would accept your mom. I don't see why they wouldn't. My husband was under hospice care for the last 22 months of his life. Start calling around today. Best wishes.

Countrygal55,

I admit that I know absolutely nothing about this scenario, however, I am wondering if you refuse to bring her home, what would the facility suggest?

It seems to me that you have rights too!

Perhaps speak to an administrator. And if that doesn't get you anywhere, speak with your local Council on aging or even an Elder care attorney.

At 95 with the issues she has, it sounds like too much to be taken care of in a home setting without in home nursing care.

God bless!!!

I think the hospice rules and criteria are absolutely ridiculous these days. Outrageous in fact. By the time a person meets their criteria, they have a week left to live for petesake. It's frustrating and very unhelpful to be in the position you're in right now, that's for sure.

Demand to know how she's stabilized with all the issues she has going on, and get her doctor involved. Tell the doctor you've heard her make choking noises while eating and struggle to breathe at times while sleeping. Exaggerate. Call other hospice companies. Don't give up till you get her registered again or into a hospice facility.

Best of luck and Godspeed with such a difficult situation

Countrygal55,
I am so sorry for what has happened. I admit I am confused with hospice rules these days. My DH Aunt, 94, with dementia is on hospice for several months now. I had asked for more baths due to increased incontinence from her home health agency. They said I could get them through hospice. I was so surprised that she would even qualify. They said she qualified because she had dementia and because that was a terminal disease, no cure for it. So we went on hospice and she got more baths. I could go on with other surprises but I think if I were you, I would call another hospice to evaluate your mom.
I would also ask what criteria she met that made her eligble in the first place and how did they measure to decide they had stabilized? Then you would know when to call them back.
I hope you can find some help in the interim.