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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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HI there! I know this is probably after the fact but i would start with appealing the hospice revocation. Ask for the hospice director to perform an inhome visit to evaluate. She may no longer qualify under CHF but it sounds like she could qualify under Senile Degeneration of the Brain (hospice uses this more general term that covers Dementia type illnesses). If she does/did end up being disqualified, you can always have her reevaluated by another hospice. Just ask her primary physician for an order for an evaluation. Most doctors have no problem doing this for someone of your moms age/condition. Sorry this is happening...unfortunately it does happen sometimes, but a hospice that can see things a little more objectively should be able to requalify her based on your description. The fact that your dad just passed is a huge indicator of the remaining spouse's prognosis. Even if she might not seem aware, I believe she still knows. Best wishes and so sorry for the loss of your father. My dad passed this last October:(
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Onthewing: That is very excellent for your successful resolution.
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Thank Heaven they recertified her! It should have been a “no brainer”IMO.
Hospice does have CNA’s for bathing but to my knowledge they don’t come daily (this is to address Alan’s comment). But you have hired your own CNA to augment the Hospice CNA hours.
You get a huge “atta girl” for fighting the good fight for your mom.
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That is great news. My husband is on hospice, age 63 with frontal temporal dementia. He is total care and now down to about 100 lb. I have a caregiver with him when I work but the rest of the time I care for him. He is on hospice also, for a year now. The staff----RN's, MD need to recertify him every 2-3 months to be on hospice . I am told that any little change will still qualify him. Keep asking questions if the staff say that she may not qualify. I have an electric hospital bed for him and would hate to lose that, it is a life saver. May God give you strength.
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Onthewing Dec 2018
Thank you! My guess is hospice will want to reassess her eligibility in a few months however, it is clear to everyone now that her decline is consistent. I don't imagine she has another 3 months...or at least I cannot fathom it based on the dementia decline and immobility decline. She is also struggling to speak and to understand what others are saying. She does still have an appetite but can only eat if we bring something to her. Otherwise she would not eat.
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My Mom's hospice covers NONE of her home aide care. Somethings weird.
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Onthewing Dec 2018
Our hospice covers showers/bed baths, nail trims and foot and leg massage. But I have to private pay for a CNA to come in and do other things...mostly at this point, to engage with her, take her to bathroom, etc. If she's not engaged constantly, she goes into an almost catatonic state where she is trying to think but is fully confused. My husband cannot talk to her nonstop so we do hire some someone who is willing to do that. But our hospice does have volunteers who will come for an hour or two just to talk with patients.
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There are many home aide agencies that work directly with Medicare to cover a portion of the cost of home aides.
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I read recently that CMS has trial hospice programs that do not require a terminal illness diagnosis. The trial programs were with hospital networks. There was a list participants and locations. The only one that I recall is with the University of Chicago. You might want to see if this trial hospice program is available to you.
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Also simply get online and look under federal guidelines for hospice. Take it from there.
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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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BarbBrooklyn Dec 2018
That is the best thing I've heard all day!!!!!!
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hospice care is for individuals who have a prognosis of 6 months or less.[altho there are those who can stay longer as long as their condition worsens] You probably need to talk with her doctors to determine what her prognosis is. the doctor and/or local Dept. of Aging can help you seek palliative care which is basically for those who need help but do not meet the prognosis for Hospice care. also review your income to determine if you can hire part or full time caregivers to assist you in meeting your mom's daily needs. you might also talk with friends and/or other family members to see if any are willing to provide some assistance. You may also consider counselling for yourself as it is most important for you to take care of yourself [dept. of aging may also have suggestions for you. Frequently, the Hospice program in your area may be able to suggest some resources to help you. Churches/synagogues/mosques are also good resources.
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I always thought Hospice was for the whole family ? The most importaint thing is that your mother is comfortable especially after loseing her husband I am so sorry for your loss..I will pray that you get to keep her hospice
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Onthewing Dec 2018
Prayer answered! Found out today that hospice will be keeping her! The nurse was seeing the decline and some newer issues, and advocated for her to the medical director. I'm so relieved!!!!
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Dementia (Alzheimer's) is a terminal illness.  That is the justification for my mother's hospice support.  She is completely bedridden and is completely dependent on care by others.  Call your mother's Internal Medicine doctor and ask for help.
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Onthewing; I am so upset to hear what is going on with your mom this is just unbeleiveable!! Switch Hospice service there are All Different Hospice I always use VITAS they are nation wide and if your personal care physician is Denying your mom HOSPICE you can use the Hospice Dr. Although you may have to bring her out to see a new Dr Look For A Geriatric doctor that speaializes in elderly you have to understand the hospice Needs a Dr that knows what the proper diagnos there are special codes that the dr must follow ,so lets say the the diagnosis is Alzheimer's disease there are many different types of Alzheimer's so only certain codes are acceptable. That goes for other life threatening disease also so If i was you I certainly would not sit back and let them push her off Hospice! Change your hospice and Doctors GOOD LUCK AND PRAYERS TO YOU !!! keep us updated please!!
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I would ask the Hospice supervisor if endstage dementia is a diagnosis your mom would qualify under hospice or if your mom is eligible for palliative care covered by medicare.
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Have you talked to a lawyer? Sometimes things change when these decision makers get a call from an attorney. They would rather avoid legal conflicts.
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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.
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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.
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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.
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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.
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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?
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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!
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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."
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Call another hospice! Please!
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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.
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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.
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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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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!)
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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.
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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.
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Also all you have to do is to tell your existing hospice you are going to call ACA. THEY won’t budge from there.
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