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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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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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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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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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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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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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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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Also simply get online and look under federal guidelines for hospice. Take it from there.
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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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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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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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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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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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Onthewing: That is very excellent for your successful resolution.
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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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