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My 99 year old mom lives with me and my husband. Both my parents have been on hospice for CHF. My dad passed away peacefully at 98 three weeks ago. My husband and I lived with them as Primary caregivers and hospice was a great service and support. My Mom is 99 with dementia and anxiety disorder. Her CHF symptoms have pretty much disappeared and her biggest issue is age decline. She is 90% immobile after my Dad's death. Dementia has worsened and she now lives with us. She needs 100% care. I have relied on hospice for shower care and meds help as well as emotional support. The only meds she takes are anxiety and depression meds. I have been told that because she is really suffering from age decline and not really dying of CHF, Medicare will no longer cover hospice for her. I am devastated. My stress levels are already so high that I'm not sleeping, I'm having heart palpitations and am depressed and anxious all the time. She needs someone in the room with her all day and won't watch television...she just sits on the couch with glazed look. She is also grieving my dad through her dementia....


I'm unsure how to do this without hospice. She cannot go out to doctors anymore. I cannot shower her...my back is deteriorating from lifting and dressing her. I find myself thinking it would be best for her and me if she passed away. Then I feel guilty because she is a sweet, fragile lady that is so appreciative of what we're doing for her. But she is afraid to die, which keeps her living...even as miserable as she is. Feeling abandoned by hospice and feeling like we're being thrown into a cold ocean and must learn to swim....or drown.

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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.
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Reply to BarbBrooklyn
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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
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Reply to Shell38314
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Kathie333 Dec 8, 2018
God bless you Shell! What good advice! It was nice that you acknowledged the lost of her dad, and lack of time to morn.
It also was good advice for her to talk with her mom about fears of dying.
And yes it's important to let people know when they're at the final stages of death, that it's ok to go, that they will be missed and always remembered. God bless you for your kind heart, and honest advice.
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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.
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Reply to Countrymouse
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Thank you everyone! Found out today that hospice has decided to keep her and I am so thankful and relieved.
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Reply to Onthewing
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BarbBrooklyn Dec 11, 2018
That is the best thing I've heard all day!!!!!!
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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.
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Reply to AlanBingham
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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.
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Reply to anonymous310342
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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.
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Reply to Marcia7321
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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.
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Reply to busymom
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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.
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Reply to dragonflower
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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.
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Reply to Madtoe
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