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Contact your doctor and ask for Hospice. Dementia, Alzheimers, and Parkinsons have now been added to Hospice and it is such a blessing. It will then open up other new possibilities of care such as CCSP and caretaking help at reduced costs. Hospice itself does not help the day to day care but it does help with no longer having to take the loved one out of the house for doctor visits and such. They send a visiting nurse once a week to take care of their health/physical needs and there is always a physician available to them. Someone comes in up to 3x's a week to bathe the loved one and change beds, they provide all medical needs including medicines, pull ups, personal care products and chucks for the bed. Hospice by itself does not do everything that is required for caregiving but just having someone to ask questions and realize you are not alone or the one with dementia, as I sometimes think, is a wonderful help. They are there for the family as well as the loved one. They also provide a week of respite every month or two in one of their facilities to give the caregiver a break. I encourage anyone feeling down about caregiving to please, please, please - do this for yourself. If you are turned down by Hospice, wait 6 months and try again, this is a deteriorating disease and they will pick your loved one up on their program soon. It took the second try for my mom, she got in under cardiac and dementia reasons. Hope this helps someone else. Blessings!

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Hospice has never had a six-months-you're-out rule. It could always be extended if the recipient still qualified. And no one stays on it even six months if they improve enough to not qualify.

My husband did not have to give up his primary care doctor -- I contacted her by phone once during the hospice period.

Anyone interested in Hospice Care, which is for persons within the final stage of their lives, should contact a local hospice organization for information about how exactly they work in your location.

Hospice is a wonderful concept, and it should be considered for persons in the final stage of their lives from any cause -- cancer, dementia, congestive heart failure, etc.
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in indiana my mother was permitted to keep her primary care doc the entire time she was on hospice . im glad because he turned out to be a force to reckon with when hospice got too pushy for our comfort .
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Yes, I live in the USA.... it is paid for by Medicare. It no longer has a defined 6 month your out rule, only that after 6 months your life is not as good as it was 6 months ago and if it isn't then it is renewed. What patient with these diseases is usually better after 6 months? All I am saying is that all it costs you is a phone call to a hospice program to see if your loved one qualifies and if it will help you. I had a lot of doubts about it when I first called also. A lot has changed over the last year within the program. Yes, you no longer have your own doctor as long as you are on the program, which you can come out of if you find it does not work for you. I can no longer get my mom in a vehicle to get her to doctor visits. There is a nurse that comes every week for an hour to check her out and we have access to an on-call nurse 24/7. There is a doctor that they have access to 24/7. My mom no longer wants tests and going through procedures to extend her life. This helps her and the extra help helps me.
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Well that's what I thought, hospice is for the end stages. Not every patient with alz, park, or dem.
The original poster made it sound like there was some major change in policy....or, perhaps, with some paperwork dance, caregivers could get some help for the 9 1/2 years before "the end." I am hopeful there might be some relief for caregivers. ...but honestly the country would go broker than it already is if they were to pay for help for the increasing numbers of these patients (as the babyboomers hit senior years there's an expected explosion of cases).
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My husband lived with dementia for ten years. He certainly would not have been eligible for (or need) hospice for ten years! He did have hospice care for the final five weeks of his life. It was wonderful!

My mother went on hospice after she broke her hip. She also had dementia. She improved sufficiently on hospice that she was removed from that program. She still has dementia, of course. But there are no indications that she is close to death.

Hospice is paid for by Medicare. To be eligible, a physician must certify that the illness is terminal and if it runs its usual course will result in death within 6 months.

For persons in the end stage of dementia, hospice is an awesome option.
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Hospice is used for people whom been deemed near death or within 6 months and will not improve. Although not all those factors have to be met... it varies from state to state but simply have AD/Dementia/Parkinsons does not make the person eligible. You/the patient give up the right to be seen by their normal physician... it's hospice all the way.

It would be lovely if they would include late stage AD.... God knows I could use a week away
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May we have a few more details? Are you in the US? Who is reimbursing the hospice costs? Is there a link to Medicare describing a change in policy?
Thanks for more info.
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