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My friend has been told by her ENT and cancer docs that she is at end of cancer care. Current symptoms are bleeding from mouth area, nausea, and dementia. Due to long history of mouth cancers, she has been on a feeding tube for years. ER doc and hospitalist recommend home or residential hospice, or maybe skilled nursing. She wants to be HOME. Her 76yo partner cannot lift her.



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Wants and needs are two separate matters at end of life. I'd never put my loved ones thru such an outrageously difficult task and expect them to cater to my myriad of needs, feeding tubes, mouth cancers and Hoyer lifts simply bc I "prefer" to die at home. Especially since death is a solitary pursuit anyway! Are no visitors allowed in a facility with hospice? Of course they are, and often allowed 24/7 access to boot. To expect this level of care from a 76 yo partner is selfishness beyond words, and entirely unacceptable imo, especially w dementia at play when the elders are often unaware of WHAT they want!

Its time to let common sense and proper end of life medical care prevail.
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My Dad wanted to die at home, and I made sure that happened. HOWEVER, I wouldn't do it again, with what I learned from that experience. It's all well and good if the hospice nurse/dr are actually available, and it there are nurses coming into your home regularly. That wasn't the case for us, sadly, and it was very traumatising for me, not to even begin mentioning how much more pain Dad was in due to no one being there to order more meds for him.
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AlvaDeer Apr 2023
Hospice is changing so much cinderblock; I so agree with you. It has become a CNA to bath twice a week, and RN to stop by once. A call from Clergy and a call from Social Worker who is my recent experience with a friend knew NOTHING. Then they hand you a little morphine bottle and all the equipment rental they can find and exit the premises. What was a "mission" has gone all "for profit" and there have been postings here of articles about hedgefunds buying these up fast as they can. It is very change and very sad to see.
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If your friend opts for in-home hospice, just know that 99% of her care will still fall on her partner or family.
Of course they will supply a Hoyer lift if needed to lift her, and any and all needed equipment, supplies and medications all covered 100% under her Medicare.
And like already said a nurse will come once a week to start, aides to bathe her at least twice a week and a social worker, and clergy person coming once a month to start, again all covered 100% under her Medicare. But more than likely outside help will need to be hired to help in her care.
She can also go to a hospice home for the final week of her life, and that will also be covered 100% under Medicare. Now if she outlives that week, her family will have to pay out of pocket for her to stay there.
I do know that the hospice homes are quite beautiful and peaceful and she will receive great care there until she dies.
Hospice will still come if she's in a nursing home, and do what they'd do in the home, but it's not quite as nice of a setting as home or the hospice home. That's my opinion anyway.

My late husband too wanted to die at home, and I was willing to do whatever it took to keep him home. He was completely bedridden and under hospice care in our home for the last 22 months of his life.
I had to hire an aide to come in the morning to put him on the bedside commode. And because he was under hospice care for so long, I had to stay on top of things to make sure he was receiving the care he deserved.

I hope and pray that your friends final days will be as peaceful as possible.
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My dad did home hospice. Knowing what I know now from taking care of him through it, I would have opted for a different agency in the community that has a on site hospice house for the patient to spend their last week or so in after the nurses see that the end is nearing. We didn’t know that only one agency had this and it was too late to change. I also didn’t know how exhausting, mostly emotionally, but also physically it would be, and I certainly didn’t know how hard some aspects like his body being removed and the utter silence afterwards would be. A hospice house would have been a huge kindness is so many ways
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Hospice at home should provide any and all equipment that would be needed to move, transfer your friend.
The Hospice Team will come in several times a week. A Nurse will be there at least 1 time a week, a CNA would come in to help bathe at least 2 times a week. the rest of the Team comprised of a Social Worker, Chaplain would come at least 1 time a month.
She can request a Volunteer to come in 1 time a week, the Volunteer can sit with her and or she can ask for help with household chores.
Medicare, Medicaid and all other Insurance will cover Hospice in Home.
The cost of Hospice in an In Patient Unit is not covered and would have to be paid for unless it is for Pain or Symptom management or Respite.
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Are there any funds for her care?

This is problematic for certain. I think Hospice will not allow home care without 24/7 care. They did not for my friend late last year, and even tho she hired friends CHEAP (20.00 an hour) she was over 250.00 a day in paying them, plus food brought in. It was enormously expensive.

I would think that hospice in facility care may be the only option. I don't see how the hubby can otherwise do this.

I am so sorry for this unhappy news for all involved.
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I think it all depends on what the family is capable of as far as providing care. In home hospice means that hospice nurses and aides come by a few times per week to check on the patient. The bulk of the care is up to the family. Situations such as pain, agitation, powerful meds all mostly managed by family. My friends sister ended up being the sole 24 hour caregiver to their bedridden mother for several months. Her health took a hit and she had to seek medical care after the funeral.

My dad was being discharged with hospice in Jan 2022, during a bad COVID wave. I initially prepared to bring him to his home, about 10 miles from where I live. Several issues made me change my mind. I would largely be alone, since my brother lives 6 hours away. He and his wife proposed us all taking weekly “turns” at dads house. I realized in that scenario, I was one mishap away from not getting a break… they have car trouble, get COVID, etc resulting in them not being able to come.
I also had to factor in I was newly post op from a 2nd shoulder surgery (and missing rehab due to dad’s illness), and have a back that tends to go out. I doubted my ability as a 110 lb woman to care for a 200 lb bedridden person.

We ended up using his money to pay for a small reputable care home, with hospice visiting there. They thought he had a few weeks, but ended up passing less than a week later.

Another interesting thing with paying for the care home…. He passed in the wee hours of the morning Jan 4. They gave us ZERO refund on the rent. His belongings were cleared by that afternoon and they could have rented to another patient. My lawyer wanted to go after them, but I had no fight left in me.
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Being unable to lift her is the dealbreaker for staying home.

Facility.
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IMO she is at the point where it is no longer what she wants, it is about what she needs.

Personally, I think it is very selfish of her to expect her partner to care for her at this stage in the process. I imagine that the partner has been through enough, and deserves some consideration.

I vote for a facility.
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My mom was in a hospice facility, actually a small hospice care home. We were very satisfied with the quality of care.

If you have a choice between home care and a facility, definitely go with the facility.

My brother started out with home hospice. The nurses were great but they aren’t there around the clock. They do send aides to the home too. Sometimes, volunteers will help as well.

When he went to a hospice facility he had around the clock care.

Take advantage of everything hospice has to offer, the social worker and clergy are there to help.

Best wishes to you and your family.
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Unless she can afford 24/7 care at home, a facility is the best choice.

I always think it's cruel to ask elderly spouses to administer morphine in these situations. I have a friend in her 80s who will never be convinced that she didn't kill her late husband with the last dose she gave him. For that reason alone, I would recommend a facility with trained people administering medications.
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patpaul Apr 2023
I counsel a woman for whom the same is true. The guilt has overwhelmed her.
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Facility given her condition
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