Has anyone had experience with having a loved one discharged from hospice?

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

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~

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.

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.

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.

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.

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.

My mother was also discharged from hospice care, she did improve while on hospice. They were a wonderful support team. She was able to get on palliative care at that time. About 6 months later she had a fall and ended up in a nursing home and eventually on hospice care again, she passed within a month. Hopefully there is a palliative care program for her. When she starts to decline have her re evaluated for hospice. Best of luck on your journey with your Mom.

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.

Hospice has weird rules and guidelines that most of us learn thru trial and error.  From what you have said, I have no doubt that your mom will be back on hospice...it's just creative paperwork.  If you fell she needs care to make her comfortable, stand your ground with her doctors.

Your mother needs care at home or in a facility, but that is something apart from Hospice. Hospice will help manage the dying process, but it is not a service for general caretaking. Whatever caretaking you cannot do yourself will require hiring help at your own expense or using whatever resources your mother may have.

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.

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.

Unfortunately, hospice care is dictated by Medicare regulations. In the past, there were abuses of the hospice benefit where hospice providers as well as subscribers had patients on hospice for years. Now Medicare dictates that hospice providers must document decline. If the patient's condition stabilizes, then the patient needs to be discharged. However, if it can be documented that a patient continues to decline once hospice is removed then the service can be reinstated. The hospice is responsible for developing a care plan upon admission. At that point a patient and family can choose which part of the care team they need. The nurse is responsible for assessing with the patient and family those services.