I am so frustrated. Hospice says they will drop my MIL on Tues because her decline is not rapid enough. So the hospice bed, catheter, hoyer lift, catheter, etc all goes back.
Then I will go somewhere else to rent it all.
Then I may re-apply someday.
Problem is..........she IS declining. But not quickly enough.
Just frustrated. I hate being assessed by the government.
She is getting great care from me. And that has worked against me.

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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.
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Wow. All I know is that on two separate occasions I have stayed with relatives so they could leave a the nursing home facility and have hospice see them at home. In both instances they were told there was no time limit to their hospice care. In the case of my aunt, she had cardiac issues - CHF, and severe arthritis and was on the program until she passed over a year later. My uncle had pretty severe COPD and hospice was really wonderful about his care for a good 18 months until he passed. He might have been on longer if he didn't refuse physical therapy for strengthening. They did say that patients in the program couldn't seek additional treatments toward, basically a 'cure' for a problem such as perhaps surgery, that they can only administer comfort measures, but they were wonderful with all of that- medical equipment, great nursing and home health aides, even physical therapy. Also, and which I am sure is not the case with your MIL, an aide told me that they can discontinue care if a patient gets too rude (meaning lewd?) but again it seems that could be addressed with a change in who attends such a patient. This was in Massachsetts. Perhaps policies change depending on area and how well staffed the facility is? But I was told that despite rumors of hospice patients having but six months on the program, some have been on for even a number of years. I hope someone else can verify this for you.
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Ask about getting her on Palliative Care. If that Hospice offers it she may be able to just be transferred to that. She may even be able to receive some of the same equipment, etc. Her nursing visits would decrease, but if her condition worsened, then they could just switch her back to Hospice care. I know it's frustrating, but Medicare has gotten so strict lately. I am a retired Hospice Chaplain and over a period of 15 years I saw so many changes, especially in the last 4-5 years, that negatively impacted who can qualify for care. Good luck.
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Vivian, is it your view that hospice was at fault? My impression after reading your post is that maybe Grandpa was not quite up to the care needed for her. Would she have been better off in a nursing home while under hospice care?

Im not criticizing. You grandpa is to be commended for his dedication as a caregiver but your story does raise the question.
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Oh, and I just saw Vivian also......
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I've been doing some volunteer work for a non profit hospice. I have nothing to add to this discussion other than the fact it is one of the most informative threads I've evervseen on the details of hospice care.

Thank you Maria, Maggie and Veronica. This is the way it should be done on this forum.
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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.
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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
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Thanks for taking time to encourage me. I really appreciate it.
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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.
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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.
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Thanks Veronica. MIL was admitted in January of this year. At that time she was able to walk (barely) with walker, fed herself, was incontinent urinary...still sat on commode chair for BM's. Shortly after admission, she stopped walking and became bowel incontinent also. Since then her verbal skills have declined but she will occasionally say a sentence or two. She is bed bound since mid February. Since then............she is less verbal and unable to feed herself. BUT she is still able to put together words. I think that's the problem. If she was non-verbal, hospice would keep her. Also, she has no bed sores. She can no longer hold her head up independently. This has all transpired over the 7 months. Nothing new in the past 60 days. I am fine with going off hospice but it feels I was immoral for taking hospice help. The hospice people don't make me feel that way. But the government "language" does. Guess I'm just sensitive. Thanks for listening
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Maria I am sure that hospice does not want to drop MIL but they have to justify keeping her as a patient. the Medicare rules are very strict and if they are not followed to the "T" they will loose their Medicare certification and that would mean the end of a not for profit hospice because that is where most of their funding comes from. At the begining of every benefit period each patient must be assessed by the hospice team and a report sent to Medicare justifying that the patient remain in hospice care. Hospice hates having to discharge a patient and if there is anything that has worsened since her last assessment that would justify keeping her they will do their best to find it. MIL's Dr will be able to prescribe the necessary equipment that you are now getting from hospice and a public health nurse should be able to care for the catheter
I agree that she is in far worse condition than many hospice patients but although you see a decline she may not have progressed much from her admission. As someone else said patients with ALZ may live for many months or years in this kind of state and the hospice benefit was designed to only last about six months.
hospice generally discourages the treatment of such things as UTIs and pneumonia which generally shorten a life and will only pay for something like radiotherapy when if may relieve symptoms by for example shrinking a tumor and thus reducing pain.Ttreatments are never authorized if they are of a curative nature.
The patient's own Dr continues to be responsible for the patient's care and the patient can still visit if able. It is extremely rare for PCP to visit a patient in their home, instead they rely on a report from the primary nurse which he/she submits every 2 weeks and which they regretfully rarely read. The nurse may think a patient has had something like a seizure,call the Dr and he will order medication or if the Dr is not available the Hospice medical director may prescribe. As far as feeding or not feeding a patient it is never advised as long as the patient is able to take the nutrition but when a patient of their own accord refuses food it is not forced and attempts are discouraged and no artificial feeding is started.
You and MIL are on the borderline and I have no idea which way the decision will go. Rack your brains to try and identify any thing that has visibly worsened since MIL was admitted to hospice. Could she walk , roll over, feed herself, request things, read, watch TV, stand up, be showered, was she incontinent of both bowel and urine, has she begun to choke on liquids or food, have you started thickening fluids and pulverizing foods? I can't think of anything else but you know what she could do and can't now. They really want to keep her so help them all you can.
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Thank you, Marialake, for understanding. It was a hard thing to type.
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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 ....
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One more thing that is difficult to say. As you read the stages in Reisenburg's Scale, perhaps you need to stage her yourself. And if she is in the 7th stage, consider whether your feeding her is the right thing to do.

I hate even typing that. But I'm pragmatic about our final journey. Please don't take offense.
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Perhaps this might help at the hearing as well. It's Reisenburg's staging scale:

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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:

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.

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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.
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Or garbage. It picked up WAY MORE than I meant to. READ THE LAST PARAGRAPH. Sorry. Wish we could edit...
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Well, I've certainly NEVER heard of anyone being dropped by hospice. Did your doctor withdraw his assessment? My best friend's dad was in and out of hospice for seven YEARS. I know Medicare has changed, but it's hard to believe they DROP people because they don't die fast enough. WTH?

I just Googled and found this:

"Paying for Hospice Care
Who is eligible for the Medicare
Hospice Benefit?
Will I lose my Medicare if I elect the
Hospice Benefit?
Do I have to change doctors to receive care?
Am I locked into hospice care once I elect
the benefit?
Is there a limit to how long I can receive hospice care?
What costs
are covered?
What if I move to a different setting
for care?
What if I am in a nursing home or assisted living facility?
How can I learn more about this benefit?
Social worker with patient family memberPaying for Hospice Care
Hospice care is available to anyone, regardless of insurance or financial resources. No one who needs our services is turned away because they cannot afford to pay for care.

Generous community support helps Hospice & Community Care, founded as Hospice of Lancaster County, the community's only not-for-profit hospice organization, provide quality care to all in need of hospice and bereavement services.

For most hospice patients, the cost of hospice care is fully covered by the Medicare Hospice Benefit (under Medicare Part A, or hospital insurance). The Medicare Hospice Benefit provides a daily allowance to the hospice organization. In turn, the hospice organization pays for all medical services, medications, durable medical equipment, supplies and treatments related to managing your serious illness and approved as part of your individual plan of care. The hospice plan of care focuses on comfort, rather than curative, measures.

Like Medicare, Medicaid and most private insurance companies also provide coverage for hospice care and services. Private insurance benefits, deductibles and co-insurance requirements may vary by plan and are therefore reviewed and communicated on an individual basis.

For those not eligible for coverage through Medicare, Medicaid or private insurance, or for those who desire services for symptom control while pursuing curative treatment, Hospice & Community Care offers our Fee Reduction Program. Supported by community donations, the Fee Reduction Program works to ensure that everyone in the community has access to quality care and comfort when coping with serious illness and loss.

The Fee Reduction Program determines a maximum out of pocket expense you may incur for hospice care and services based on your annual income. When your maximum out of pocket expense is met, your care will continue and is covered by community support.

Common Questions about the Medicare Hospice Benefit:

Who is eligible for the Medicare Hospice Benefit?
Medicare beneficiaries must meet the following criteria to qualify:

You must have Medicare Part A.
You must enroll in a Medicare-approved hospice program such as Hospice & Community Care.
Your doctor and the hospice medical director must certify that you have a life-limiting illness with a probable prognosis of six months or less if the disease runs its normal course.
You must sign a form indicating that you are electing your Medicare Hospice Benefit to cover the costs of services related to managing your life-limiting illness.
Will I lose my Medicare coverage if I elect the Medicare Hospice Benefit?
Standard Medicare coverage for services unrelated to your life-limiting illness does not change and is not affected by electing the Medicare Hospice Benefit. Services related to your life-limiting illness and included in the hospice plan of care are covered by the Medicare Hospice Benefit in the form of a daily allowance issued to the hospice organization who then pays for the cost of these services.

Do I have to change doctors to receive care from Hospice & Community Care?
No. The Hospice & Community Care team works with your physician to provide Hospice care for you and your family.

Am I locked into using hospice care once I elect the Benefit?
No, you are not. You may revoke the Medicare Hospice Benefit at any time without penalty. There is no loss of coverage or service days. You may also re-elect the Medicare Hospice Benefit at any time, provided you meet the qualifying criteria.

Is there a limit to how long I can receive hospice care if utilizing the Medicare Hospice Benefit?
Since no one can predict the course of a serious illness, there is no limit on the number of days a patient can receive hospice care. The Medicare Hospice Benefit consists of two 90-day benefit periods followed by an unlimited number of 60-day benefit periods. Each benefit period requires medical certification of the life-limiting illness at the beginning of the period. The Medicare Hospice Benefit covers the cost of hospice care and service for every medically certified benefit period regardless of the patient's length of stay in the hospice program."

Notice it says an UNLIMITED number of 60-day periods. Your doctor isn't re-upping him. Talk to your doctor.
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