Follow
Share
Read More
This question has been closed for answers. Ask a New Question.
My mom has recently been put on hospice..it scares me that she might be taken off… has had GI bleed / diarrhea that had her hemoglobin critical. It’s stopped … now hemoglobin is good… if anyone has insight about when hospice may not be needed due to the above corrected, please let me know.. my mom is 90 with hallucinations, diabetes, neuropathy, etc… it was the GI need that was the catalyst for hospice..

The support for my mom is wonderful. Edema of legs with break thru sores, addressed immediately, along with rashes etc. medications followed….a visit from the nurse weekly with a follow up call to me, CNA twice a week, a minister 3 times a month , a social worker monthly, social worker found a volunteer who comes 3 times a month just to visit. At a time when staffing is hard to find, my moms memory care staff had been working 16 hour shifts… this certainly is a relief that my mom is getting good care…
Helpful Answer (4)
Report
lealonnie1 Mar 2022
Speak to the hospice team Babs; what was the other criteria used for her Medicare reason for hospice admittance? There was probably more than JUST the GI situation that made her eligible.
(5)
Report
See 2 more replies
@Lealonnie1, The Hospice I used for care and the one I Volunteer for has Teams. Some Teams do only Facilities and some do only Homes and in the case of a Hospital In Patient Unit that would be a permanent assigned position. So in BurntCaregivers case there may have been two or even three teams as well. BUT within the Team there can be "good" employees as well as "bad" ones. If there is a problems with someone that you disagree with or do not get along with you can ask for someone else to be assigned so there should not be a problem.
Helpful Answer (5)
Report

I stopped in at the Hospice facility just to ask what the qualifications were. I talked to a Nurse and from my conversations she said that my husband would qualify.
That same week I had a CNA call and schedule, the Nurse called.
For the next 2 years and 11 months I had the most wonderful Team of loving, caring, Angels help me care for the Love of my Life!
I learned how to change a bed with someone in it. I learned how to change a brief ("diaper") with him in bed. (It almost never looked as good as when the CNA did it but I did it) I learned how to use a Sit-to-Stand then a Hoyer Lift. I learned how to prevent pressure sores (he never had one!) As he declined I learned what to look for and listen for as his body began to give out. The morning he died Hospice was there to support me, the Nurse made the call to the Funeral Home and they waited for the Funeral Home to come.
The care, support, education that I got from the Hospice Team allowed me to SAFELY care for him in our home.
I honestly think that because of the help I got from Hospice he lived longer than he would have without them. And I know because of Hospice I remained sane.
Helpful Answer (9)
Report

Hi Lea, I haven’t posted for a while but this resonated with me. My wonderful MIL passed away in a hospice last year and her experience there was of great comfort to the family. She chose to forgo painful treatment that would have prolonged her life only minimally, and instead opted for end of life care in a hospice. Having made this decision and discussed this with her family, including those who felt she was making the wrong decision, she spent just over 2 weeks in the hospice. The staff were very kind and, despite the COVID restrictions, allowed family visits with appropriate precautions being taken. My husband was kept informed of how she was doing when he wasn’t actually with her, and when she died it was peaceful and pain free. I know this might not be the case for everyone, but my father opted to stay at home in his final weeks, and in hindsight I really wish he’d chosen a hospice. His illness was extremely painful for him, and I feel that had he been in a hospice, the pain relief would have been more readily available. In fact, after dad died, I and my husband agreed with each other that if either of us were terminally ill and unable to express our wishes, we both wanted a hospice for our end of life care.
Helpful Answer (4)
Report
lealonnie1 Mar 2022
Hi Chris, glad to see you posting! How are YOU doing these days? It's too bad your dad chose to stay home to pass rather than use hospice services to keep him comfy. I'm with you; DH & I would each want hospice for our EOL care, should it come down to that.
(2)
Report
My dad received excellent care in his home with hospice services. They came regularly plus anytime I called. There was always a kind, knowledgeable voice on the phone when I called with questions. When the needs became intense they offered me a list of non employees, but people they knew and could vouch for who’d done exactly the kind of help we needed. I hired some excellent ladies to help in the final week. Dad had honest conversations with the nurse about what to expect and was well informed about his choice to receive hospice care. The nurse taught me to do meds the proper way for a terminal patient and advised me regularly on what to expect. Dad was peaceful throughout. It was an impossibly hard situation, sad beyond words, but filled with compassionate care and I remain grateful
Helpful Answer (6)
Report

My father was under hospice care but in the hospital and they were absolutely wonderful.
They took excellent care of him and were a very good resource to us as well. Unfortunately, my father graduated out of hospice care because he improved enough to go back to the nursing home. He died shortly after.
I've been an in-home caregiver for a long time and will say that I have never seen a positive experience with hospice care at home.
Some people I'm sure have, myself personally no.
Helpful Answer (4)
Report
lealonnie1 Mar 2022
Odd that you've 'never' seen a positive in home hospice experience, yet in the hospital, hospice was wonderful. Do they send different nurses to hospitals than to homes??
(0)
Report
See 2 more replies
I would prefer to discuss reasonable expectations for hospice.

At a minimum accepting hospice requires admitting the obvious: not only (as we all know) does life end, but that end has now become immanent. Perhaps weeks or months, or perhaps a little more or less: but, it’s no longer an abstract “someday we’re all going to die,” but it’s become something that is here, right now.

And, yes, sometimes near-miracles happen: a spontaneous remission of cancer might be one-in-ten-million, but it’s not zero. And yet, even if something like this happens, by the time one is receiving hospice there are usually many underlying conditions, and so even if the most life-threatening one were to recede, for most life expectancy will remain short.

As for hospices, some organizations are better than others, and the quality of the people they employ can vary. I don’t doubt there are at least a few self-appointed “angels of mercy” who feel it is their duty to bring life to an end sooner rather than later. I expect this is very rare, but not totally unheard of. So if you’re not comfortable with someone, ask if you can have someone else.

The quality of hospice organizations can vary as well. A few may simply lack the capacity to provide adequate care (perhaps due to understaffing), but this has become rare. What has changed over the years is the nature of these organizations. When hospice first came to the USA most hospice organizations were tiny non-profits staffed by idealists, mostly people who’d come to realize that overtreatment at the end of life may, in its attempts to extend life, not only cause unnecessary pain or disability but all too often will actually shorten life as well.

It should be understood by all that hospice will not focus on extending life, as it's there to provide care when this is no longer a realistic goal.

Today’s hospice is nonetheless far from what it started out as: instead of small, idealistic organizations today’s hospices are giant bureaucracies, and not only must all of these live within the constraints of Medicare funding, but some do seem to put more effort into marketing and sales than the actual  provision of care.  If what you’re receiving seems deficient, you should at least bring your expectations in line with reality: a hospice may simply be unable to provide what you want due to these constraints; the world is what it is, and hospices, like the rest of us, must remain within their budgets.

But if you think they should be doing more, the place to start is with your phone: write down what you want to discuss with them, and then do it. And if you still can’t obtain satisfaction after explaining what you expect and their explaining what they can do, only then consider calling a different organization to perhaps see if you can obtain an evaluation.

The provision of end-of-life services day-after-day for years on end is just something very few can handle; people get burned out, or they just can’t take it anymore and they move on. But at a minimum, if you’re not getting what you expect from hospice the place to start will always be your phone: give them a call, talk to them and see what they’re willing and able to do.
Helpful Answer (2)
Report
lealonnie1 Mar 2022
Is this your 'positive' hospice experience to share???
(0)
Report
See 1 more reply
My mother qualified for hospice because she her body, despite eating 3 meals a day, and MANY snacks, continues to lose weight. She is listed as “malnourished”. She has stage 6 out of 7 dementia.

Mom’s Hospice nurse and aide come to her MC. They are sweet, compassionate caregivers, who fiercely advocate for the best care possible. They are endlessly patient with her, which in my mind, makes them super-heroes. My mother is not an easy person to care for.

The nurse and the social worker consistently communicate with me. The chaplain also visits with Mom, and calls me after he does. A social worker visits frequently, and when she does, she calls and gives me a report.

I would recommend my hospice company, wholeheartedly. I am in the Central Florida region, in case anyone needs a referral.
Helpful Answer (6)
Report
lealonnie1 Mar 2022
Thank you Colleen. I'm glad your mom was accepted into hospice care, after all you've both been through.
(2)
Report
Lea,
I think that person is a pure troll. I honestly think most of us have had good experiences with hospice, and I believe we have posted them here. I think that people can come and ask and we can tell them, but we won't ever change the mind of someone who is just trolling us. I am so grateful your Mom had a good experience as your journey with her was a long one, and she deserved the care and the peace.
You asked, so here goes. My brother had sepsis. He had two years before been diagnosed with Lewy's but was quite with it when he died, and it had been his wish to beat down deaths door before Lewy's could get him. He did. When the sepsis was completely unresponsive to IV antibiotics, when he was nothing but dying slow of explosive (likely C Diff diarrhea) he begged me to get him home to his ALF rooms to die in peace with hospice. I had to fight the hospitalists tooth and nail as did he, but we did it.
It was such a relief that last week to have him in the gentle kind arms of hospice. Such was our experience before that with out Mom. We had literally to FIGHT the MD who said "I can't tell you she has only 6 months". He was right about that. She only had three weeks. Once we beat back the MDs hospice cared for those I loved, and helped them. My mom was in her 90s. My bro 85. I am 80 and I want to tattoo on my forehead "CALL HOSPICE NOW".
I thank goodness for Hospice. As a nurse. As a human being. As an aging elder who is READY.
Helpful Answer (12)
Report
Annie65 Mar 2022
Amen to thank goodness for hospice - it is the only way to fly at the end of life. My 90 year old mom passed after two weeks in a wonderful place here in Denver. She had dementia and I was her caretaker for 4 years. She suffered during that time and I feel she was able to let go with the comfort and care she got in hospice. I did in home hospice for my brother for eight months (liver disease) and it worked well for him so I have had experience with both in home and placement in hospice residence. It depends on the disease, age, etc. but I can't imagine a better way to pass and definitely agree Alva deer that I definitely want hospice if and when I get to that stage in my life.
(3)
Report
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter