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Two tough lessons I learned today that left me literally in a sobbing heap on the floor:
I knew in-home hospice required 24/7 care, but I didn't know the exact plan had to be in place before the initial hospice evaluation, so, hospice can reject you.
Frankly, I am very surprised to learn that "the exact plan" had to be in place before the initial hospice evaluation. I would have guessed that the plan would have been prepared after the evaluation. Can you speak with a different agency?
Now, I am not surprised that a 24/7 home health care aide would be very, very expensive (but I am somewhat surprised at $20,000). Is it possible for your sister, or other relatives, to provide all, or part, of your mother's care to lower the cost? Could she move in with her daughter or another relative in her hometown? Would it be cheaper if your mother was in a nursing home or other facility for hospice rather than at home? Is it possible for your mother to go on Medicaid when her money runs out? Just a few ideas off the top of my head.
Again, I am so sorry. It is devastating to know that your parent is dying and then to face all types of other problems, too, must be extremely difficult.
I wish you the very best of luck. Warm hugs and kind thoughts.
There's only the one hospice agency and I thought exactly what you had thought. When I called the palliative care social worker in hysterics she was surprised a bit but said she's seen it. I was able to get that in place today but then realized the cost. it's hourly, $27.50
There's nobody to provide it except me if I move in and that's the end of me. My sister is a useless I can't curse here so whatever
We will indeed have to start all over again and figure out the nursing.
There is ONE avenue of hope (but I've lost hope) in that there is a hospice affiliated private residential home environment that we did tour yesterday and she really liked. That would cost nothign due to hospice. But it's based on availability (we don't know if they ahve it, it's so small) and need (she does have the need but she has to be approved)
First, I am sorry to hear that you are dealing with such a situation.
I work as a home-health physical therapist for a large teaching hospital.
What is this "exact plan" that has to be "in place" before the hospice evaluation? In all the places I have worked at, the patient opts for hospice, then a hospice nurse performs the initial visit to admit the patient to the program. There is nothing that has to be done prior to the evaluation.
If a patient is in hospice, s/he should not require a 24/7 home health aide. Our aides visit the patients 2 or 3 times a week, to help with bathing, shaving, etc; a nurse would also stop by a few times a week.
Have you talked to a social worker? They know of a lot of resources.
I am keeping my fingers crossed that the "hospice affiliated private residential home environment" works out. Your mom likes it, they will care for her and it is free, three huge, huge pluses!
Good luck. Stay strong. Your friends on CD are rooting for you!
Last edited by germaine2626; 06-29-2018 at 06:38 PM..
If you don't go with an agency, you could piece together 24/7 care much cheaper than $20k per month.
You could have one room and board caregiver to provide day care and then pay another person an hourly rate to provide over night care. You would have to have a few people on hand to make it work, but I have heard of people who can make it work with one or two people. You just have to be creative. And make sure your parent's homeowner's insurance provides workers' comp benefits. That is one of the reason people go with agencies.
Two tough lessons I learned today that left me literally in a sobbing heap on the floor:
I knew in-home hospice required 24/7 care, but I didn't know the exact plan had to be in place before the initial hospice evaluation, so, hospice can reject you.
and 24/7 home health aide costs 20,000 per month
there are no words
I am so sorry you are going through this. Bad enough you're worried about your loved one and then they pile that on you? To be honest, I've never heard of Hospice doing 24/7 in home care and $20,000 seems like waaay too much.
I don't understand what kind of "plan" they want you to have in place. Whether the patient will be at home or a care facility? I don't know but it seems like you'd have options other than this. I sincerely hope you can find the right agency to talk to.
I was an in home caregiver for a few years. The majority of my patients were terminal so I dealt with Hospice on a regular basis. Hospice didn't do any 'care' except visiting a couple times a week to check up on them, take care of hygiene needs and write a report. Most patients didn't need 24/7 care because the families helped a lot and they had CNA's...me...part time. The ones that did require 24/7 care had 3 CNA's working 8 hours each. Way back then, at $10 hour, that would come to about $6,700 month. When it went up to $12 hour it cost the patient $8,000 month and at $15 it was $10,000 month still way less than $20,000. I have no idea how it was all paid for, whether Medicare, Medicaid or 'other'.
Hoping you find a good solution that works for you and yours.
My Mom was in hospice in a private residential facility with 5 patients. Her only qualification was that she was declining and at end of life. She was 101, so of course those two conditions were met. All the services were covered and it was a good solution for her. I don't believe you are getting correct information.
Hospice doesn't do the 24/7 care but they require that it be in place if hospice is being done in the home. that's because of medicare.
There is no hospice facility in my mother's area but there is a private one that is affiliated. But first you have to be accepted to hospice and my mother wasn't because we didn't have the 24/7 care plan in place already.
I was later told I should have just lied about it.
If my mother can get into this residential place it will cost nothing, but it's based on availability and need.
I think the path forward is that I need to forget I realized the cost of the home health agency, and just move forward with the hospice evaluator coming to the house and correctly stating we have secured that care. Because we have, not lying. And then figure out another alternative because my mother will run out of money quick and may outlive her money
I did get the correct information but the information is awful. ugh
I don't understand what kind of "plan" they want you to have in place. Whether the patient will be at home or a care facility? I don't know but it seems like you'd have options other than this. I sincerely hope you can find the right agency to talk to.
I was an in home caregiver for a few years. The majority of my patients were terminal so I dealt with Hospice on a regular basis. Hospice didn't do any 'care' except visiting a couple times a week to check up on them, take care of hygiene needs and write a report. Most patients didn't need 24/7 care because the families helped a lot and they had CNA's...me...part time. The ones that did require 24/7 care had 3 CNA's working 8 hours each. Way back then, at $10 hour, that would come to about $6,700 month. When it went up to $12 hour it cost the patient $8,000 month and at $15 it was $10,000 month still way less than $20,000. I have no idea how it was all paid for, whether Medicare, Medicaid or 'other'.
Hoping you find a good solution that works for you and yours.
The two places I called were $27.50/month for 24/7 care. My mother doesn't even need that much care now. But she will soon.
This social worker who came to evaluate wouldn't budge an inch. She said it's because of Medicare regulations.
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