My 99-year-old mom is being removed from hospice because she no longer qualifies?!?

I'm so sorry for your loss of your father, and for what you're going through now.

First of all, take deep breaths. Your father's passing means that at the moment you are going through a crisis. Just when you need time and calm to adjust, you find that the support for your mother has been called into question.

Have the hospice services for your mother already been withdrawn, or has this just been mentioned as a possibility?

How awful to have this happen as you process the loss of your father. You can appeal Medicare's decision. It would be helpful to have your mom's doctor weigh in as well.
Don't try to do this alone. Get help even if you have to pay for it yourselves.

I had the same thought: appeal. There must be an appeal process. Your mom's CHF has stabilized most likely from the excellent care she was regularly given from hospice.

Also, determining that the CHF has somehow cured itself because the lady isn't showing symptoms is nonsensical. If she is sitting still and well supported, in a recliner or with her feet on a footstool, then she isn't going to be breathless and there won't be any oedema so's you'd notice. Doesn't mean her heart function is any better than it was.

My mother used to tell people that she wasn't ill because her symptoms were well-controlled. In her case it was pride and denial, but I'd expect a hospice team to have a better understanding.

I've been told that hospice will make a decision this week as to whether they will discontinue her. So it's not yet decided. However the nurse told me last week that the medical director is asking her questions as to whether my mim is dying of CHF or age decline. The nurse can't document symptoms at this point that show her deteriorating from heart failure and my mom always says she is doing fine when she isnt. She has a way of putting on for others...but my husband and i see her at her worse. Her dx from the doctor is CHF...and I don't think that goes away on it's on. It's just not presenting as her dying right now. My Dad had clear symptoms and was a classic hospice death....
I feel like I want to advocate for her but honestly it may be mostly for me?

I am sorry for your loss. I am sure that this is a difficult time for you. You have not had much time to deal with the lost of your father just to turn around and be abandoned by hospice.

Under Madicare rules a pt must be at the end stage of their illness & it will only pay for 6 months, however, as you know people don't die on a time frame; therefore, Medicare will extend the hospice care on a month-to-month or for another 3 months if the pt meets their criteria. Yes, Medicare is known to pay up to a year or so. This means the pt must show signs of declining. Which your mom made not be showing at this time.
This doesn't mean she is not seriously ill. It just means that she may not be meeting Medicare requirements.
Some people for whatever reason will be on their death beds one minute and the next not showing any symptoms. Does this mean their better? "No" They are just asymptomatic (at the moment)!

CHF does not heal or get better on it's own. If she was dx with CHF and did not have treatment if it was possible than your mom is still very ill.

Appeal to Medcare! You will probably have to find away to get your mom to a cardiologist. Medcare will want proof that she is still 'going through her end stage'.

On another note: you state that your mom is afraid of dying, do you know why? Can you talk to her about it? Or maybe she needs permission to leave this world! I have seen where people hold on even when it looks as tho they shouldn't be (beyond medical reasoning), and the minute someone tells them that it is ok to leave, they pass on. Tell your mom she has nothing to fear and that your dad is waiting for her. Give her your permission to go! This doesn't mean she will just pass away but when she is ready 'she'll let go'.

May our God be with you and shine His light on your path to show you your way. May His grace, mercy, and peace cover you and your mom in this most difficult time in Jesus' name. Amen

Fume seethe...

Right. Better now.

The medical director of the hospice service is asking the nurse for her assessment of your mother's condition - to be blunt, whether your mother is dying of heart failure or just experiencing the normal decline of extreme old age.

Line up the medical records you have, including especially those which were referred to for your mother's original hospice admission/approval. What do they say?

Onthewing;

If YOU don't have help, you can't care for your mom properly.

Hospice is not MOSTLY for you; it's for the PROPER care of your mother.

Is it possible to tell your mother that it's really for the best to present with her true self to the medical professionals at this point and not to try to convince them that she's "all better"?

My mom and I had a thing; when we travel by air, I'd say "look pale". She was over 80 at the time and she needed special accommodations for TSA lines and an electric cart to get her across the very large Minneapolis airport. She wasn't going to get those by looking perky.

She would cooperatively list her head to one side and sigh as needed.

Contact your local Area Agency on Aging - ASAP. They can often help provide in-home assistance at little or no cost. They can also direct you to other available resources.

My father is also 99 living in an assisted living facility. Please check with your moms insurance to see what kind of in home care they may provide. With a doctors letter, they may provide at least a bath aide and maybe more depending on your moms medical needs. This is not hospice but can definitely be of help. Dad pays no co-pays for this service. He also has issues where he needs a nurse to come to him three days per week. This is also covered through his insurance. Definitely check this out.

I worked in hospice for a number of years and this is what is called 'graduating' when a patient no longer has a diagnoses of an end of life within six months. It would seem to me that your mother no longer has the medical problem that triggered the diagnosis for hospice. Unfortunately, there is no easy relief for you except finding a private pay help provider who can help. This, unlike the hospice which is under Medicare will carry a charge for you. The social worker at the hospice provider should be able to make a recommendation of some local providers. Alas, this is just one of the problems with healthcare in the US. We need an integrated system that is co-ordinated.

Will Medicare pay for home health care?

My understanding of hospice is that they have to give you several weeks advance notice of "dropping" a patient from their services. You are allowed to "fight" the decision. You can get a doctor to intervene, get an additional evaluation from another hospice group, and if Medicare is really the culprit, you need to do whatever to get them on board to provide absolutely necessary care for your mom.

I'm so sorry for your losses (your dad and who your mom once was). This is all an extremely difficult time of life.

I agree with Bobby40 to contact your local Agency on Aging. Hopefully, they can point you in the right direction.

My dad was on hospice nearly 4 years after being diagnosed with prostate cancer that spread to other parts of his body (kidney, bone, etc.) We were told that it would likely be a speedy demise. No one can really say how long someone will live!

At one time, I was told that hospice was going to drop him. I immediately contacted a friend who was a hospice nurse for another company and she was able to evaluate and reassess his care needs. We hired her company and they came on board without us losing a day of hospice service. It was a great blessing, even though I didn't have the knowledge ahead of time how it would all work out.

Hospice is intended for persons with a terminal condition from which they will die within 6 months. That is true of all insurance companies and not unique to Medicare. (Think about it from an insurance perspective - why should any insurance company pay for "hospice" when the person does not have a terminal health condition?)

Simply being extremely old is not a qualifier for hospice. Medicare will pay for some in-home medical care for chronic health conditions, so you might investigate that.

Don’t fret. I went thru similar situation. Call her doctor and tell them she complains of something whAtever she had in the past. He will write another letters get another hospice. They will do it.

Also all you have to do is to tell your existing hospice you are going to call ACA. THEY won’t budge from there.

What a horrible situation. First of all, you must demand to find someone in charge who can tell you WHERE and ETC. to put her. Explain you CANNOT AND WILL NOT ALLOW HER TO COME HOME given your health concerns. Do NOT allow this. Then contact the county Aging Office and even contact your local state senator and assemblyman. Often they can give you referral information and help. You cannot allow her to come home and you must stand firm - no matter what. I think she needs to be put into a facility where the proper health is there for her. I hope blessings come to you soon.

This is ridiculous. She needs to be reassessed and in hospice for dementia which is probably covered. Maybe a different hospice program. Maybe services through your county/area agency on aging. I predict things will improve soon as soon as you link with the right contacts.

According to a 2011 document from the National Hospice and Palliative Care Organization, in 2006 10% of Medicare patients on hospice who died had Alzheimer's as their primary diagnosis. It also says that Alzheimer's disease was among the top 10 Medicare hospice codes used between 1998 and 2005.
The document is written for hospice providers.
https://www.nhpco.org/sites/default/files/public/Dementia-Caring-Guide-final.pdf

As has been recommended, get your mom re-assessed with a focus on the dementia. But you may want to get the CHF remission verified, too. In the two articles (one a clinical journal, one from the Mayo Clinic), the patients were much younger than 90 and interventions were done (medical device, medication therapy) to bring on the remission. Generally, CHF is said to be noncurable.

And some Medicare Advantage plans will cover home health aides in 2019. Enrollment ended yesterday but if she's already in an MA plan, perhaps...

Deep breaths, make some calls, and get back to grieving your dad and comforting your mom. (Condolences there!)

Oh wow, I feel ya. Can you ask to provide her the best nursing home? That way, if she becomes very ill, they will send her back the hospice. I really don't think she's afraid of dying. I think she is waiting for your permission to let her go. The glaze look sounds like she is slowly dying. If I were you, tell your mom that you love her, and that you know that if she passes, you, and your family will be fine. I think it'd speed up her time to go with her husband.

Take care, and good luck.

My mother in law recieved hospice at 94 for failure to thrive. She was losing weight , experiencing early dementia and weak. That may help you.

Do you have a different hospice provider in your area? Maybe a different company will take her. I had my mom at home and she declined until she was bedridden...I got no help until she went on hospice. Do you have a home health aide that could come in even a couple of hours a week that could bathe your mom? I hope you can find some help as I went through feeling abandoned as well several times by various sources like doctors. Wishing you the best, Katie.

Call another hospice! Please!

You are grieving the loss of your father and it seems as though Hospice is taking advantage of your low point in some way. Congestive Heart Failure does not go away. Hospice is asking for the medical assessment of your mother. What your mother is doing in front of others is called "showtiming."

I'm so sorry you're having to go through this, especially right after the death of your father. My mom is also 99 and she has been on hospice for over a year. She had a diagnosis of dementia originally, but hospice told us that she wouldn't qualify unless she had Alzheimer's (she has no other life threatening conditions), so we had the doctor change her diagnosis. This has allowed her to remain on hospice. Have you tried talking to another hospice provider? They should help you figure out a way to get her back on. Good luck to you!

Alzheimer’s is just one form of dementia, so that hospice company shouldn’t have been so quick to disqualify her. But talk to her MD about changing her diagnosis before calling another hospice company. Does she qualify for Medicaid?

Get hospice to do a diagnosis of dementia - not CHF. That's what my uncle has. And, it was explained to me that he can see Drs for other conditions if necessary. Say that she wanders, has hallucinations, or whatever, if necessary.

I suspect each state is different - he is in AZ. Hospice in CA gave my mom a dementia diagnosis even though she didn't have it. She did have osteoporosis and had fractured vertebrae and was in pain (and ready to go).

Best of luck getting new diagnosis + much needed help.

You said, "my back is deteriorating from lifting and dressing her. " Medicare will pay for a patient lift. Look into get u up lift by Invacare it is easier than the other lifts.

My Dad with dementia said he didnt think he would go to heaven. They all have similar fears and we have to help them along the journey.
I lay down with Dad at bedtime and reassure him he will go to heaven. I told him the nuns in catholic school told us when you die, the Lord will ask "Do you love me?" When you answer , "Yes, Lord I love you", he opens the door to heaven. I say, "See how easy it is?"
Then I list all the people there waiting for us. I don't make it sound like he has to do the alone.
Then I list all his accomplishments,,,you are a good worker, a great father, and husband. You were a good son, you are the family favorite. You are a terrific dancer, you are handsome, funny and smart and everyone loves you.
Hang in there, it won't be much longer.

Talk to the hospice social worker, they have guidelines they have to observe about who can and can't be on hospice, so s/he will have been down this path before.

Your mom needs 24 hour care. If her finances are such that she qualifies for medicaid, she could receive that care in a SNF or, with a waiver, through home care. If the hospice social worker can't provide answers, call your county's office of services for the aging.

ps - Depending upon the stage, a diagnosis of dementia can also qualify for hospice care. Basically, any diagnosis with a prognosis of 6 months can qualify.