Anyone else been dropped by hospice?

Marialake, my heart goes out to you. This is very difficult stuff to deal with!

I believe that the rules for hospice when dementia is the "only" morbidity factor have tightened.

My mother has dementia and went on hospice care after she broke a hip. She was expected to die within weeks. After three months of progressive improvement, she was discharged from hospice care. My sisters and I agreed that she was no longer on the short path to death and did not need the extra attention from hospice. BUT we were concerned about the equipment hospice had provided. In many cases Medicare can provide the same or similar equipment, and Medicaid will cover supplies. Some of the things hospice was providing were no longer needed.

I am sorry that you are losing the extra attention and care, but you don't have to lose all the equipment. It is just a bit more hassle to get it provided. Hospice is awesome at cutting red tape. Now you are back to dealing with red tape. It can be done, but I am sorry you must deal with it. Perhaps the hospice social worker can advise you on shortcuts to get what you need.

Thanks for the response Maggie.
It's the hospice doctor who must prove to medicare that my MIL is worse than she was 60 days ago. She is 89 years old with late stage alzheimers and cannot feed herself. She is completely bedbound and incontinent (bowel and urine).
She has no bedsores at all and no other serious conditions other than the alzheimers. She is able to talk on occasion but mostly nonsense.
Medicare is apparently cracking down on alzheimers in particular because patients can live for a long time. So she needs another problem - like a bedsore or something. Anyway, for the assessment..........she ended up looking and acting the best ever. Not a good thing. So there is a hearing about our case on Tuesday. Doesn't look good.
Yuk. That's just how I feel.

I see. Medicare doesn't consider Alzheimer's a life-threatening illness. I'm so sorry. It sounds as if you know exactly what's going on, but I can't help offering that the doctor can order a wheelchair, and Medicare will pay. They're ordering that for my mom right now. She also has a hospital bed. It's free, too. (Not on hospice.) But I do know that hospice offers many more wonderful services than just regular Medicare. I know you must be devastated to think of losing many of them. I hope the hearing goes well.

I Googled, and it seems that hospice does cover Alzheimer's. Perhaps it's a question of stage: http://www.alz.org/stl/documents/hospice_info.pdf

There's something very wrong about pulling her hospice care when she can't feed herself. If you elected to stop feeding her, she wouldn't survive. There's something wrong there...

I wish you very good luck at the hearing. Maybe it's one of those things that, if you jump through the appropriate hoops, they will allow it to continue. I hope so.

Maybe there's something here that will help you at the hearing:

Quote: Hospice still quotes the Six Month Rule but they use the new guidelines to qualify a Loved One to be covered by Medicare. Many hospices would not have the financial resources to care for those in end stage Alzheimer’s Disease without Medicare coverage. The general guidelines are that the Loved One be in Stage 7 of the disease (according to Reisenberg’s seven stage scale) and have some form of complication, such as:

Unable to ambulate without assistance;
Unable to dress without assistance;
Unable to bathe properly;
Urinary and fecal incontinence; and
Unable to speak or communicate meaningfully.
The complications that may be present at the time of qualification may be:

Aspiration pneumonia;
Signs of a recent stroke;
Upper urinary tract infections;
Bed Sores or Decubitus ulcers (multiple, stage 3-4);
Recurrent fever after antibiotics; and/or
Difficulty in swallowing/refusing food.

ec-online/knowledge/articles/hospiceknox.html

Absolutely no offence taken at all. Thank you from the bottom of my heart for taking time to correspond. MIL is stage seven in every way except she can talk. She stares. Her eyes bore right into me.
Yes, the feeding thing makes me wonder. She just opens her mouth wide and I have to put the food in. All the saliva makes me queasy ....

Maria there is no reason to feel you have been accepting help you were not entitled to. It sounds as though MIL did and still does fulfil the criteria fo hospice care but maybe I am missing something. Patients go on and off hospice all the time so by all means call them back later. Make sure the new equipment is in place before hospice removes theirs. Call the nursing supervisor tomorrow and ask if there is anything that can be done to prevent the discharge. Make sure they know that there is no way MIL can get any nutrition without your intervention that is life ending. Not being able to walk talk, prevent incontinence etc are not life threatening.. Many people are bed bound but in no danger of dying within 6 months.
Because she performed well during the evaluation is largely due to the excellent care you are providing but I think if you stress the inability to obtain nutrition it may and I say may alter their perspective. We were told when my MIL took to her bed to expect her to die within six months because that is usually the pattern with dementia. My specialty is end of life care and although some patients do become disturbed and apparently demented at the end of life this is not the norm for hospice patients. if you want the service to continue you need to make a strong case to have them stay. I do understand their nervousness about keeping a patient with dementia enrolled for over 7 months. It is a very fine line.

Perhaps this might help at the hearing as well. It's Reisenburg's staging scale:

werner-saumweber./alzheime/7stages.htm

Thanks for taking time to encourage me. I really appreciate it.

My Dearest grandmother was on hospice, she had congestive heart failure and arthritis. My Step Grand father wanted to do most of her care, he's 10 years younger than her. He would turn down respite. My uncle moved in with them in August to help out and was a CNA, and myself as well. I think between the two of us, he asked 3 time for us to sit with her while he did whatever. My uncle talked to me about concerns he had about my step grandfather over medicating her, and he wanted all her medications cross referenced. Other things were changing as well. My grandma was alert, joking walking to the rest room and was even looking forward to her birthday in early February. Her pain meds were being increased more and more.She had fallen many times and 3 times she had to go to hospital. She had to get Stitches on her head, No action were taken by hospice or grandpa to insure her safety after all these falls. My uncle had brought up his concerns and suggestions again and Nothing was done, they continued to over medicate her to the point of being completely knocked out and on Jan 11, 2015 my uncle once again talked with grandpa about his concerns again and that he thought she needed bed rails also.Later that evening he heard grandma say "don't push me, don't push me" my uncle opened his bedroom door and asked is everything okay? do you need some help? grandpa said "no, she's just having a bad night". later that night my uncle woke up to the paramedics. He did not yell or shout to paul for any help.Grandma had fallen once again, this time she broke her hip. she stayed in the hospital 3 days, she wanted to go home and had a hospital bed at her house now. she now needed all those meds, she was in good spirits, she was happy to be home, she said "I will be fine as long as I have you all with me". We had called a meeting with the hospice nurse so we could all be on the same page. Now her level of care had changed, and we had our concerns.They continued to increase her pain meds, and then on the 22nd of Jan, she passed on. There was a lot of things that were just not right. A lot more to write. Grandpa had complete control with hospice, they just did what they wanted. Grandma at Christmas was walking slowly and joking and was herself, not even close to death. The family is divided, some are very much grieving and angry and others are just having no emotions at all, grandpa being one of them. My uncle and I have been told to leave it alone and not bring up the situation by every single on of our family members. I'm very interested in other people's thoughts and opinions on this situation. She was\is my favorite person, my rock! All these falls happened after christmas. Her hip was broke on January 11,2015, hospice continued to increase her meds even more, she passed away on January 22nd 2015. All of her falls were in grandpa's care while on Hospice. Thank you all for take the time to read all this. God Bless

Yes. My mother was dropped last week on a Wed afternoon.They said " services would end Sun. My mother is declining too. I take very good care of her. The Dr. said I took to good of care of her. I am exhausted and angery. Taking care of my mother isn.t that had its dealing hospice and home health care provders. They have dropped transporting her. They have clipped my mom nails in to the quick to the point they bleed. I have aid bath aids pretend to bath her and they did just changed her clothes and left the same depend on her. I thought she didn't look clean , so i took a pen and made little star in writing of her depend and the next time changed her after her supposed bath there was the star. I will write mor later. It just makes me weary to write about it.

The father of a friend of mine was put on hospice from the hospital--they took him off all his meds and sent him home. (His problem was, I believe, heart issues.) He actually improved, and lived almost a year and a half. At one point, there were questions raised about the time he had hung in there, but they did continue the services.