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Old 04-27-2018, 06:12 AM
 
Location: Northern Maine
9,428 posts, read 14,166,945 times
Reputation: 8772

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My wife had palliative care for about four weeks, then hospice care. All of this was at home where she wanted to be; looking out the window at her beloved woods. When hospice offered their service, she said, "I am not leaving this house." They said they would come to her and she could be pain free. She said, "OK, but I don't want to be loopy." She never drank a drop of alcohol in her whole life and neither had her parents. The hospice lady said, "You don't have to be loopy, but you will be sleepy." She was that nurse's 273rd patient.

Many people face death as a terrifying experience. My wife was told at her diagnosis that she had ten weeks to ten months and that "nobody survives this." It was a sudden and shocking surprise to us. We made the best of our time. She passed at sunrise on a Sunday morning, looking at her beloved woods. We were less than a month from our 53rd anniversary. I am the fourth generation in my family to be married 50 years or more.. My wife was the second in her family. We have been to numerous 50th anniversary celebrations. Our cousins are like us. Our sons have a chance at getting to 50 year marriages.

Hospice care, done correctly is a blessing.
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Old 04-27-2018, 06:27 AM
 
9,440 posts, read 7,497,728 times
Reputation: 5934
Quote:
Originally Posted by Macrina View Post
Crone & Nov3, I'm so sorry to hear of your truly wretched and horrible experiences. The differences between your situations and mine has to be at least partly due to the local management. What you both described was unprofessional and scandalous.

.
Maybe local management of a very large national company. I have blocked out the name. Wish I could remember. But I did write the management after she died. Never heard a word.

One thing I did not mention was that the person who was to see that she was not being abused told me the first time he was there that his BFF was my son's boss. IMO, that was a conflict.

He should have removed himself. But as he told me, he liked my house and the music that was always on for my mom. So he sat in the kitchen drinking coffee and listening to the CDs.
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Old 04-27-2018, 09:37 AM
 
9,440 posts, read 7,497,728 times
Reputation: 5934
I'm told the Drs and the hospitals have a goal of patient satisfaction. Too bad nobody is monitoring hospice care. The patient died is not a good reason. By the time a family gets locked into one, emotions take over.
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Old 04-27-2018, 10:01 AM
 
Location: SWFL
21,062 posts, read 17,917,378 times
Reputation: 18375
Quote:
Originally Posted by charlygal View Post
No offense, but unfortunately your husband was terminal. What could the hospice have done wrong with a patient in their last few days of life.

I know this is touchy but hospices have their place. The patients are there to die.
Quote:
Originally Posted by Nov3 View Post
Crone. You carry a parallel experience the same as I.
Often I get the eyebrow from folks as if I am making it up or just being ungrateful for such service. There was though the cna that bathed and tended to the supplies. That lady exuded compassion. The indifference of the 'team' once she passed was other worldly. I recall having to fill out their survey and I got a phone call from the director. She pretty much gaslighted my experience. I conceded as my grief took front stage to her defensive remarks.
The relief though in reading some posts here is that there really are some respecting and caring staff.
Wow, my comment resulted in a thread?

OP, of course I knew my husband was terminal. I was surprised he hadn't died already.

What could they do wrong? For the 3 nights and two days he was there, IMO, everything. His oncologist kept telling him he had the strongest heart of a dying person he had ever seen. I only had hubby put into hospice when I did because he would not stay in bed that night and he kept falling, knocking over tables, lamps, a bookcase and then ran head first into the refrigerator and sent him backwards into another bookcase I had as a room divider.

After they got him settled in, he went to the bathroom and the toilet clogged up. The maintenance woman was pissed. I went home after a few hours because I had animals to let out. Next day never saw a nurse. Went home, went back. Nurse talked to me telling me they had put a diaper on him. Next day same thing. When I was leaving that night he said he needed to poop. I went down to the nurses' station and told them he needed help getting to the john. They told me he HAD TO POOP IN HIS DIAPER. I went back to his room in tears and told him. His shoulders slooped, his head hung down low. I cried and cried, told him I loved him and I would see him in the morning. He told me he loved me, kissed me and I left thinking he was going to die that night because of his body language.

Didn't he die at 3:30 a.m. OMG, just typing this I am crying buckets re-living it. They would not give me 1 second alone with his body. I asked for a minute in private and the nurse refused to leave the room. Then they made me pick out a funeral home quickly because they "needed the room" and the funeral place was up in Southie (Boston). They put his stuff in a plastic bag and sent me on my way.

They called me to ask if I needed help coping. I was polite and said no. All I wanted to do was rip them a new one. Do you wonder why I am negative towards THAT PARTICULAR HOSPICE?

I am pleased to hear others' good experiences. Wish those of us who didn't have good ones, that things could have been different.
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Old 04-27-2018, 11:13 AM
 
Location: Sneads Ferry NC/Randolph NJ/Cape Coral FL
12,890 posts, read 23,899,309 times
Reputation: 10669
Hmmm, I had in home hospice for about one week for my husband before he passed. This was after 48 hours in a hospice center, they had him so doped up and tied in a chair at nurses station, told them to back off the drugs and transport him home. The nurses at my home were all very good, but I still think hospice hastens the death, jmo. I asked them a few times as long as he was comfy to back off the drugs, he didn't have to be loopy.
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Old 04-27-2018, 12:18 PM
 
3,914 posts, read 5,194,120 times
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I had a really excellent experience with hospice with my mother, when she had a stroke and needed to move from assisted living to a nursing home. Hospice helped with that transfer and I had a consistent nurse who visited 2 times a week in the nursing home. They also provided bathing for her. She lived for 3 months after being in the nursing home, and the hospice nurse was a great support to me when I had to be making critical decisions, and also helped with keeping her comfortable during those final days.

My experience with my husband was somewhat less glowing. He died at home, was never at the in-patient hospice. It took two weeks for hospice to get all the beginning paperwork, evaluations and interviews done, which seemed long to me, considering that he died about a week after they actually started. They did have the equipment I needed brought in (hospital bed, bath bench) but the hospital bed was faulty, and one rail just fell off when my husband leaned on it, which resulted with a fall onto the floor. That was traumatic. They brought in another bed. I had several nurses, not just one consistent one, like I had with my mom. They gave differing versions of how long he had left. I realize that making that judgement is really not an exact science. But the midnight visit by one of them (in response to a call) was really crucial to me. She confirmed that this was the day he would die, and helped me to know what to do with various medications, etc. (He was never over-medicated because I was giving it, but when he needed morphine, it was right there, and I appreciate that.) When he did die, a (different) nurse came, did the official declaration of death, dealt with the funeral home, collected medications, made sure that I knew how to handle death certificates, and cleaned up the bedroom a bit. They came the next day and took the equipment back. I am grateful with how they handled the after-death situation. Also, the hospice provided me with a support group that, a few months later, was really important to my recovery. The directory later called me about the problem with the bed, and they changed equipment vendors because of my feedback.

So that is a mixed experience, but it is true that hospice allowed me to keep my husband at home, allowed him to die in his own bedroom, with his family, and that was important.
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Old 04-30-2018, 11:24 AM
 
Location: Midvale, Idaho
1,423 posts, read 2,232,369 times
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My hubby was only on hospice from Monday afternoon until Friday early evening when he died. There was a lot of paperwork and all going on as expected in the first days and then he was gone so soon. He was in home as he wanted to be. I would say hospice was a good experience for us if your loved one dying can be good in any way. He was not on drugs of any kind but they were here if needed. Hospice nurses would not take the unused drugs with them I had to have the sheriff come get them when he was out this way. I am 22 miles from the sheriff office. They were good to do this for me. The last hospice nurse to see him had left less than an hour before he died. I was told she was shocked he had died so suddenly after her being there as she did not expect it. Neither did I. It was a sad ending to a great day he had with friends memories and stories. I never dreamed he would be gone that fast. I have that good memory of his laughing with two of his friends for a couple of hours that morning.
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Old 04-30-2018, 02:37 PM
 
Location: Arizona
5,539 posts, read 4,689,534 times
Reputation: 16248
[quote=tamiznluv;51733941

Didn't he die at 3:30 a.m. OMG, just typing this I am crying buckets re-living it. They would not give me 1 second alone with his body. I asked for a minute in private and the nurse refused to leave the room. Then they made me pick out a funeral home quickly because they "needed the room" and the funeral place was up in Southie (Boston). They put his stuff in a plastic bag and sent me on my way.

[/QUOTE]

The part I took out was a terrible experience but there is a reason for the part I left.

Procedures are in place because of problems in the past. Maybe you only intended to stay one minute but others may have said one minute and then they had trouble getting them to leave. They may have let some people be alone with the body and came back to find the family washing it. They need the funeral home name right away so the body isn't transported to the morgue. Hospice rooms are at a premium and there is a family waiting. Try to think of them.

They just handed me the bag. I had to pack it.
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Old 04-30-2018, 02:46 PM
 
Location: Somewhere in northern Alabama
16,702 posts, read 50,755,476 times
Reputation: 27127
"Maybe you only intended to stay one minute but others may have said one minute and then they had trouble getting them to leave. They may have let some people be alone with the body and came back to find the family washing it."

Sorry, but those are CONVENIENCE issues for the hospice. Washing the body is a religious ritual for some of us. Being with the body for a while is normal. If the hospice has problems and wants to set policy, that policy should be clearly stated before any contract is signed. I am disgusted at such insensitivity.
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Old 04-30-2018, 03:08 PM
 
Location: Midvale, Idaho
1,423 posts, read 2,232,369 times
Reputation: 1811
Quote:
Originally Posted by harry chickpea View Post
"Maybe you only intended to stay one minute but others may have said one minute and then they had trouble getting them to leave. They may have let some people be alone with the body and came back to find the family washing it."

Sorry, but those are CONVENIENCE issues for the hospice. Washing the body is a religious ritual for some of us. Being with the body for a while is normal. If the hospice has problems and wants to set policy, that policy should be clearly stated before any contract is signed. I am disgusted at such insensitivity.
I so agree. I had partially bathed hubby just before he died but he had to go back to his chair and I said we will get the rest of his bath from there after he has rested a bit. But he did not feel up to it and then died. I was fortunate to know I had at least an hour before any one arrived because hospice was about 40 miles away. So I did finish bathing him the best I could in his chair. I had gotten pretty good at that. I also cleaned up around here. Put a load of laundry in the machine. Having had company for two or three days I forget now there was a lot to do. But I got to sit with him for most of the time and then after hospice got here it still was another hour and a half for the mortuary to come. I really am grateful for that time. When my first husband died in the hospital I only had a couple of minutes with him
with a nurse hovering. I always felt unsettled over this part.
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