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This is not a question, but rather some information for those looking to keep their family member(s) in their own home. My mom is 94 years old. Since I retired a year ago, I have been going to her house every day. Up until the past few months, she has been pretty self-sufficient. Now she needs a lot more care, but my siblings and I want to do all we can to keep her happy in her home. She was never diagnosed with dementia, but has had a few strokes and has expressive aphasia as a result (most times now it is really bad). More recently, she has been showing signs of Sundowners. I am with Mom 5-6 hours each day, sometimes overnight. My brother lives with her, but is in declining health himself. So what he can do is limited, but at least he is there in case of an emergency. (There are also some things daughters can do that sons can't...) Mom's doctor said a few times that we can go either way -- treat [whatever she may have] or keep her comfortable in her own home and call in hospice. I always felt that hospice meant impending death (in the short-term). We don't know how much longer she had because she doesn't have a "terminal illness." She is still relatively mobile. I finally decided to check out a hospice care center near me to see what was involved. A social worker came out and evaluated Mom and determined that she did qualify for their services. Hospice will provide support to both the family and to Mom. For starters, a nurse will come out once per week (more often when needed), and will coordinate her care with Mom's family doctor. There is also an aide who will come in a few times per week to help with personal care; and volunteers that came come to the home for 3-4 hours. A social worker is assigned to the case, as well as a nurse I can call 24/7. The care is covered 100% by Medicare, including some medicine and medical equipment --such as a hospital bed, wheelchair, etc., as needed. If Mom is still alive in 6 months, the hospice center has to show she is still in decline, then the program will continue. There are instances where some people have been in the program for 2 years. If, for some reason, the person improves, they will be released from the program. This program does not provide overnight care, so that is something we may have to address at some point. Anyway, I hope this information is helpful to some of you.

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I am sorry about the issues you have had with hospice care. The hospice center I chose is highly recommended (even by Mom's doctor). I have also known several people who were at their center for end-of-life care. When Mom was accepted into the program, I was told upfront about the meds that were and were not covered. I can still get the meds that aren't covered through hospice. I would just pay the same co-pay I always have. I also don't have to worry about taking Mom to various doctors since the nurse will coordinate with Mom's GP. (It was a waste of time taking her to her cardiologist anyway. She did nothing. At least her GP is adjusting her cardiac meds now.) Tonight, she fell, so I called the 24/7 on-call nurse who sent someone out to check on her. She was there in about 30 minutes, and took her time evaluating Mom and talking to me. That was certainly better than spending 4 hours in the ER just waiting to be seen. If she ever goes to the ER via EMS, and is admitted, she will be taken out of the program and reinstated after she is released. The other option is to take her to the hospital associated with the hospice care center. I can also stop the hospice care one day and request it the next for whatever reason. There is no contract. I do hope it works out, too. So far, so good.
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Singingway I totally agreed with you. My dad have diabetes and prostate problems when they discharged him to hospice with end stage chf. Now because his diagnosis to hospice was chf they won’t pay for any medications that isn’t heart related. Why didn’t they tell me all these before I started signing my dad for hospice? Can’t go to another doctor because once under hospice Medicaid won’t pay unless you stop using them. So now he might be dead around the 6 months mark not because of his diagnosed heart failure but of diabetes because they won’t cover it. Hospice goes around and sugarcoat things.
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This is a rosy, best-case-scenario picture. I hope it works out for you just as advertised. Ours did not. Even though some "respite" care was part of the sales pitch (I was choosing between hospices) When we needed it, I was told "we don't have any volunteers at this time..." so -- exactly zero "support" for the family or care-giver. The nurse and bath aide were there for ten minutes tops, insisted on never adhering to a schedule. When I asked the supervisor to at least tell me what DAY they were going to show up, they would call in the morning to say they were coming, then often would not show up at all that day. A particular treatment they promised they would help with, they decided (after I had contracted with them for that reason) they would not. The other interesting part is that friends and family sigh and say, "Oh I'm SO glad you finally have Hospice in...they'll take care of EVERYTHING." And there goes what little support or help you once had. Hospice provides the medical stuff -- come in and read blood pressure and heart rate, give meds. They do NOT provide respite care (their volunteers do that, IF they happen to have any.) They are not elder-sitters, and they aren't even with them long enough for you to run to the corner store to buy needed supplies. They CAN save you money on diapers IF they will. Ours only gave us diapers if someone happened to donate some to their office (after a death...) Bottom line, is it's a business. Yes, caring people are drawn to work in that business, but -- what you are hearing is a sales pitch. Take it with a grain of healthy skepticism and check your state's hospice care reviews and the better business bureau before contracting with them.
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Glad to see this bumped up. Is indeed an excellent summary of Hospice care. So much BS on the forum about Hospice. This is an accurate picture.
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That's for an excellent summary.
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So glad that you found all this support for your mom!
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