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My mother has advanced vascular dementia, so she is stable for a bit (usually every few months) and then declines suddenly. I was advised to enroll her in hospice following a hospitalization last September. She has since stabilized and improved a tiny bit (in that she can now stand-and-pivot to a wheel chair, scoot around a bit in the wheel chair), so they have discharged her. However, she is non-verbal, can’t feed herself, and sleeps most of the day. She doesn’t interact with people at all, and has a very poor quality of life. Enrolling her in hospice was a shock that I had to adjust to. I had finally wrapped my head around this new reality and seen it as a blessing...and now the world shifts again. I have no idea what to expect. Would appreciate any advice or insights. Thanks!

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Have you considered palliative care for your mother? Some hospice organizations offer it in cases where the patient is too "well" for full hospice care.
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Reply to melsharpe
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You’ll find lots of people who have great experience with hospice care. My family didn’t have a good experience, I think because it was within the context of a nursing home and not with a home environment. When my mother was in nursing home care and had a decline it was recommended she be enrolled in hospice. Pretty soon we came to see this meant much more hands off in terms of care from the regular staff. Most of what she needed became “wait for hospice to come and they will do it” from meds to showers to changing linens, the normal good care was all put off to hospice that was unpredictable as to when those workers would come. We removed mom from hospice, she lived another two years and her care went back to what we’d had before. There are many ups and downs to this road, ours was different than yours. But your main role is advocate to see that your mother is properly cared for, I’m truly sorry she can’t interact anymore. Hospice may come around again and that’s fine. Take care of yourself and your family, that’s what most of our moms would really want
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Reply to Daughterof1930
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jenf63...have you thought about appealing the decision to take her off Hospice?
The Quality Improvement Organization might be able to help you keep your Mother on Hospice.
I appealed the decision and won,just by telling them exactly what was really going on with my Mother.I needed all the help I could get.The oxygen and supplies they brought were such a help and I liked it that the nurse and bathaid came to check on Mother too.My Mother ended up being on Hospice 3 and a half years straight.
Sounds like you could use the same help...
Take care and good luck with all this~
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Reply to luckylu
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My Dad was discharged from home hospice after 8 months because he was no longer declining. He was qualified for skilled nursing services at home because he needed to remain on a catheter since he became bed-bound 5 months earlier. Less than one month later I requested an eval because his decline was becoming more pronounced. By thee time an admissions nurse and two (2) doctors evaluated him, it was two weeks later when they were about to readmit him to home hospice. He passed that day at the age of 101 & 5 weeks.

A friend of mine whose mother had dementia was discharged from home hospice to a nursing home where she lived for another 1 1/2 - 2 years before she passed.

As an aside, hospice workers are wonderful. The services they offer are great, including the Volunteer Family Caregivers (FCG). Now that my Dad has been gone for over1 1/2 years, I decided to take hospice training to be an FCG to pay back & forward. Their 8 week training course is intense and excellent. I look forward to my first connection in January.

If you have any questions about being/having an FCG, please let me know.
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Reply to MyThreeSons
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Harpcat Dec 13, 2019
I too trained to be a volunteer in hospice after my mom died of brain cancer 29 years ago. I did it for about a year. Intensive training!
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Not personally but a dear friend went through this with her mother.

Fear not - her mother was put back on Home Hospice twice - they have to discharge when they no longer meet the criteria.

However, your mother should have been transferred to Home Health Care. If she wasn't, call the Hospice that discharged her and ask for advice. They're used to it. They will even contact your mother's physician to have Home Health Care requested again.

My DH never did meet the criteria for Home Hospice but the nurse found a "loophole" and he was on Hospice for only 3 days before he passed. But what a blessing they were for that 3 days! They cleaned and shaved him and they handled contacting the funeral director for me. And they stayed with me until the body was taken out.

I would have been a 'basket case' without the Hospice help.
Call them. Today. Now.
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Reply to RayLinStephens
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Yes!! This exact thing happened to my own dad. We thought he was rapidly failing after a fall and fractured lower femur. He was bedridden while healing and stopped eating much. So hospice was approved and then he began to gain weight, go to the dining room and they discharged him. By Medicare rules, the patient has to show decline. If they improve, then they will discharge them.
however, if all she has is dementia, there are rules for what must be present by the afflicted person in order to qualify for hospice. You can find that by googling Hospice dementia guidelines. If your mom meets all of those she could be admitted again.
it is a roller coaster going through them being admitted and then all of a sudden being discharged. But it does happen. If you think she qualified based on those guidelines speak with the director of nursing at hospice and go from there.
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Reply to Harpcat
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My MIL was discharged from hospice in September after being on hospice for 16-18 months. We appealed this decision and lost. Suggest you appeal and see if you have better luck. Anyways, serious health issues began almost immediately after hospice ended. Within five weeks she had to be moved from assisted living to a nursing home where hospice was resumed (with a different provider). She died November 10. I can't say whether the outcome would have been any different or not if she had maintained hospice during this period. However, she would have been more comfortable and in less pain.
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Reply to annandpaul1629
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It might be worthwhile to contact hospice again and ask if their social worker could meet with you to help you develop a plan of care for your mom. Social workers tend to be plugged in to local services and resources that could be helpful to you. If not hospice then perhaps your area agency on aging. It is a difficult road you are on, and sadly, the only constant will be change. You might also try looking for local dementia support groups, both for yourself, and for potential resources. Sending you love and hugs.
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Reply to MelissaPA2AZ
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The primary criterion for hospice care is life expectancy of six months or less. This is hard to figure out for people with dementia, especially because good hospice care can improve the patient's condition and prevent him/her from going downhill as quickly as originally expected. Hospices that "keep" a person too long often are suspected of fraud and gaming the Medicare system, which is probably why patients who no longer appear to be dying are taken off of hospice.
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Reply to cat8person
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My husband was discharged from hospice because he wasn't declining fast enough for them. I appealed it and lost. But that was a couple of years ago, so I guess they were right. I have him at home with caregivers, though, so we weren't taking advantage of a lot of what they offered (we didn't need anybody to shower him, their supplies were substandard & they were chintzy about providing them, the whole prescription thing was a pain in the you-know-what because they only covered some of his pills, the doctor was reluctant to take his UTI's seriously, the "chaplain" was a fruitcake, he got pressure sores & they were hopeless at treating those--my caregivers have kept him sore-free for a couple of years now). I expect that I'll be getting him on hospice again at some point. But not that particular hospice. Probably a blessing that they discharged him. Also it was impossible to "schedule" the nurses.
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Reply to superstring
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Harpcat Dec 13, 2019
Sounds like you got a lemon of a hospice. Definitely get a different one. See if a friend has one they used and could recommend.
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