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My mother has Alzheimer's. When her time comes, I want her to have the specialized care that hospice provides. In fact, I have a wonderful hospice in mind where the staff is kind and competent. It's also 5 minutes from my job. She is currently in a nursing home, and from what I have gathered so far from my experience and the experiences of others, the powers that be at nursing homes have an "I am the law" mentality concerning what is and is not done. I'd like to hear the experiences of caregivers who have gone through this process, along with any tips you can offer. My motto is "plan for two steps ahead." It's the most valuable advise I have received as a caregiver.

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The not-for-profit Hospice Care Agency was owned by the "for profit" nursing home that was owned by a "for profit" private equity firm whose corporate headquarters was near Chicago. The nursing home doctor diagnosed my wife to be terminal with Alzheimers Disease and gave her six months to live. The only basic change was that Medicare and Medicaid paid the Hospice Care Agency direct but my wife was still lived in the nursing home's Azheimer's Ward.. This went on for 302 days and my wife was in the nursing home for a total of two years. Her Health Care Directive was deemed worthless and not honored. They told me if I complained to an attorney I had 30 days to remove my wife from their facility. I was at their mercy, so beware.
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Christine, not a good thing if you feel that you are not in partnership with the nh in mom's care. What sorts of issues do you differ on? I found that making it clear to the social worker and facility manager that we needed a better level of information and responsiveness eventually got us to a good place.
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Thank you jeannegibbs! It's easy to feel disempowered when your parent is in a NH. (Just a warning to all.) I needed that.
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It doesn't really matter what the NH prefers. It is your decision (with your mother). If you want her moved, she moves. Hospice can arrange the transportation. Talk with them now about the details. How often are they 100% full? What are the chances they won't be able to take your mother in when that is needed? If they can take her, how do they handle the transportation? Get the details from the horse's mouth so to speak and there will be less to think about when the time comes.
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Thanks everyone, for your answers. And just to clarify, when the time comes, I want my mom moved out of the NH into the hospice facility. I know that means the NH won't get paid for her anymore, so they probably want hospice done there (so they can increase the bill accordingly). Or they may go so far as to NOT order hospice (financial reasons). I had been wondering if anyone out there had any first hand experience with this.
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Christine; You are so right in the planning ahead department!

Are you talking about a Hospice organization that has its own facility, one that provides care within NH or both? You might want to call the Hospice organziation and find out if they've had any patients on their Hospice service in your mom's facility, and if they would come there again. You might also speak to the social worker at your mom's NH and find out who the "preferred " hospice provider is, and if they work with YOUR preferred provider.
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Christine,
Once a patient is on Hospice, they call the shots. Her care would be under the Hospice MD and RN's. Like any nursing home, everything runs under orders from the MD. Just remember, with Hospice there are no calls to 911, no rushing anyone to the ER for a crisis. It is strictly comfort care.
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My mother was on hospice in her nursing home. It worked well.

If you prefer to have your mother in a hospice facility and they have room when you have the need, by all means move her.
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