I posted the following on the widows and widowers thread, but it would probably be more helpful here, so I am copying it and reposting it.
DH was in a dementia facility and as he was dying I wanted him moved to a hospice home. It was a nightmare of Medicare regulations; they wanted him to stay in the unit, I realized through the double talk, because it was cheaper. After pleading with hospice for almost an entire day, I finally thought to offer to pay out of pocket (the rooms are about $220/day). No one had suggested this option and they acted like it had never been asked, but within an hour he was moved. And it turned out, after he got to hospice home they said his condition was much worse than reported by the field nurse and so he qualified after all.
Hospice home was wonderful. They immediately set about controlling his almost constant seizures and pain, turned him every two hours, assessed him for pain constantly and were kind and supportive of the family. There were family rooms, a garden to walk in, family could come and go . . .
I did not think that the dementia unit had adequate staff to care for DH, nor did they have the skills to care for someone dying. His meds were ordered PRN so I would have to keep a chart as ASK for them, doing his seizure and pain assessment myself. His room was situated so there was no comfortable place for more than one person to sit. Although I was paying for the facility and Medicare was paying for hospice it became clear that I was to be the nurse who cared for DH in this situation.
We had to be buzzed in and out of the dementia facility, a process which can take sometimes up to 20 minutes to get in or out. In the unit there was no place for the family to gather in quiet or private, and the only vending machine for drinks was located so we had to be buzzed in and out. Outside his room was the activity area so we had to keep the door locked to prevent confused residents from entering.
Dealing with all of this when one's spouse is a resident is one thing; dealing with it while one's spouse is dying is another. For me, a dementia unit is no place to die (if there are other options). If DH had been home or in the hospital, transfer to hospice home would have been easier, but being in a facility immediately invokes a whole different set of regulations whose purpose is to let the family pay for the facility while Medicare through hospice only pays for meds, bed and some help.
My words of wisdom here are to research and have a plan for palliative care at end of life and know where you want it to take place. I thought I had it all planned out but did not know about all of the Medicare stipulations on inpatients in ALFs. Beware, folks. I think I have PTSD from the terrible physical condition that DH was allowed suffer and my inability to get him the care that I wanted him to have and that he desperately needed.
My husband is in hospice in his dementia unit In a long term care facility. I picked a hospice from about 5 different choices and ! am very pleased with their help. An RN comes once a week to take a physical exam and if I'm there to talk to me. They provide an aide who comes four days a week to help the aides at the nursing home bathe him, shave him, put lotion on him and dress him. I have a social worker to talk to, a doctor who works with our doctor at the nursing home and a chaplain who sees him every three weeks, more if needed.
Wouldn't they have provided something like this at the ALF, Marche? Medicare pays for it. You're right though about when death is near, there is really nowhere in the facility for the family to gather except in his room and it just isn't comfortable to sit there for hours on end.
He seems comfortable and that is most important. They carefully watch him for sores and he hasn't any except for the ones he seems to put on himself because he sometimes holds his hands so tightly together we have to pry them apart and his fingers leave marks on the knuckles of each hand. They put pillows between his legs because he has a tendency to want to cross them and have put special foam and fleece slippers on his feet to prevent sores on his heels. All in all, I am satisfied with his care.
Marche is right about looking into these things before problems occur. We wait and we wait and go through such a horrendous time with dementia for years and years, with it only getting worse over time. Sometimes we think they're improving and sometimes they do, for awhile, and then the roller coaster begins again.
If I could tell each of you one thing to remember in this disease, it is always be prepared for the next stage. At diagnosis go two an eldercare lawyer or planner and put things in order, something I didn't do soon enough. Check out daycare facilities and in-home help and do it sooner than you need to, also something I kept fighting but was so grateful to have when I finally got it. Look at long term care facilities way before you need it, also something I did not do. An assisted living facility would never have worked for my husband. He would never have been able to find his way around anything, nor could he live in a room or apt by himself.
Marche, I'm sorry you had to go through what you did.
Bev, I think marche was talking about being in a facility or unit exclusively devoted to hospice as opposed to being in the regular unit where hospice provides additional care.
Having heard both your experiences I can see both sides. One thing to consider is that where I live there are not many hospice facilities. The only options are nursing homes, which here usually put hospice patients among the other patients, and taking care of the person at home. Everyone I know whose family member received hospice care in their own home had great difficulty with it, since there are no on-site nurses or aides. Although they got periodic visits from nurses or aides, basically these family members were it. My sister-in-law had great difficulty taking care of her husband when he died at home in December and later said that if she had known she would have had so little help from hospice, she would have had him moved to a nursing home. Our former member, elizabeth, took care of her husband at home with the supposed assistance of hospice, which sounded useless. She recounted to us what sounded like a nightmare, and she is an experienced RN. Fortunately, my husband's facility has a special unit devoted only to hospice. Sometimes dying patients are moved to the hospice unit and sometimes they stay in the dementia unit. It's up to the family (unless there are no beds in the hospice unit).
My husband's best friend in the dementia unit now has assistance from hospice but he is still in the unit. They provided a Boda chair and he gets also visits from their nurses. The good thing about him being in the unit is that he is in the dayroom except at night so he is in the presence of a staff member all the time. He is even wheeled into the dining room to meals. This is good because he has few family members and his wife does not drive. She lives nearby and takes a public transport van on weekdays and her daughter, who lives 25 miles away, brings her to visit on weekends. So it's good that he is not in a hospice room by himself. When he gets to the point he has to be in his bed all the time, being in the unit may be a disadvantage. One of the nurses in the dementia unit told me that when someone in the unit is dying and is in bed all the times, a unit nurse must check them every 15 minutes and it's sometimes difficult when the other residents must be given meds, diabetes care, and dressings.
I can see that when a person is close to death it would be more convenient to have a private room in a hospice-only facility or unit, especially if family is there. When my mother died in an acute care hospital, we were lucky enough to get her moved into one of their very few hospice rooms (which was in a regular unit). Both the unit nurses and hospice nurses took care of her. But she was never alone because there were enough of us daughters to rotate shifts. No one ever asked any of us to be the nurse who cared for her. None of us would have known what to do anyway and it would have been medical malpractice.
The quality of hospices vary considerably. I kept Claude at home until the end with the help of hospice the last 3-1/2 months. He had wonderful care from all of them from the RN who came twice a week, his aide who came every other day and daily the last few days, the social worker, chaplain and the physical therapist were there frequently. They were all on-call and I could and did call them with concerns I had even in the middle of the night a few times. When he passed in the middle of the night, they were there within a few minutes and took care of all the details. I couldn't have kept him at home without their care.
My sister had in home hospice for my BIL for several weeks. She couldn't handle it emotionally and had him transferred to a hospice home the last week or so.
Claude's brother developed cancer and was in a local nursing home. He had hospice care in the nursing home. An aide came several times a week and helped the nursing home aides bathe and care for him. The RN, chaplain and social worker came often and coordinated with the nursing home staff. He was on Medicaid and the hospice provided extras like Ensure, incontinence supplies and pain meds and other things the nursing home didn't provide.
As I said, the quality of hospices vary considerably. A friend had three different ones until she found one that she was comfortable with.
I live close to one of the oldest hospices in the US. While they have a hospice facility the vast majority of their patients get hospice care elsewhere. There are simply too few beds to beet demand. When my father was dying he had hospice in the hospital (he was already hospitalized). He was moved to a special hallway used only for hospice patients. My MIL had hospice at home and my FIL paid for 24/7 nursing care. And of course there is hospice at home, at an ALF and at a NH. I suspect hospice at a hospice facility is the less frequent occurrence.
paulc, I think you're right about there not being enough hospice facilities to meet the demand. I also think that many people expect more of in-home hospice care that hospice is set up to deliver.
Since the regular care of a person in a NH is already being paid for (either by the patient, if they are private pay, or by Medicaid, if they qualify), and since Medicare does not usually pay for custodial care, I'm assuming that the only things Medicare pays for are the extra hospice services. I know that a lot of for-profit hospices have popped up to give the extra care in NHs and receive the Medicare payments for that extra care.
I think that many people are confused by this. When they hear about hospice volunteers and how great hospice is, they wrongly assume hospice is a free service that provides 24/7 care. It does not. When a person dies at home, hospice does not provide on-site 24/7 caregivers, any more than they do in a hospital or NH. They will give you a hospital bed and other equipment, meds, limited visits from a nurse or an aide, and advice, and sometimes they have volunteers. (A hospice volunteer cleaned the house of a friend of whose husband was dying and a volunteer performed Reiki on the husband of another friend.) But they do not take over the care of the dying person. The family has to do that themselves or hire an aide.
What I don't understand is who pays for the regular 24/7 care in the rare hospice-only facilities. My understanding is that the patient does not pay for this care but who does? Maybe someone on this site knows the answer to this.
I will let you know about who pays for the hospice-only facility, if and when I receive a bill for the 36 hours my husband was in one. They did tell me after he was admitted that he qualified for Medicare coverage because of pain and seizures, otherwise known as comfort care not adequately controlled in the dementia unit.
Hospice facilities are considered hospitals, so when a patient is hospitalized and moved to hospice, it is a hospital to hospital move. A patient can be moved from home to a hospice facility. The most difficult move is from an ALF to hospice facility. It is just a big board game involving chess pieces of varying monetary worth and like chess different moves for different chess pieces. Arggg.
Thanks, marche. That is interesting. It sounds like the hospice system is like the rest of our U.S. medical system - organized around how things are paid for rather than the needs of the particular patient. It's good that your husband had you to fight to get him the care he needed in his last days but disgraceful that such a fight was necessary.
My husband died in the hospice house, he was there two different times, Medicare paid for everything, including the ambulances to take him back and forth to the hospital and back again to hospice house. They also called the funeral home when he passed and handled everything. The hospice house was fairly new, and was very clean and the staff was superb in the care my husband needed. We did not have Medicaid at all, only medicare and hmo Humana Ins. I never received a bill from hospice, just from the hospital, and on the envelope of that bill I marked "Deceased" and sent it back. Never heard from them again.