Mom is dying in rehab setting. Experience? Suggestions?

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My mom’s heart is failing and she is refusing food and meds. She is on palliative care in a rehab setting where they can’t give IV. I’ve requested a hospice evaluation but that can take 24 hours and I can’t talk to anyone there until she’s formally accepted. I’m concerned about her dying of dehydration because she’s so out of it on the morphine they are giving her because of her visible struggle for breath. Of course it’s tempting to try to control the situation but I don’t want to do that on purpose. I am a critic of 21st century medicine but I respect the professionals at this facility and they seem to be urging me to just let go. Anyone been through this?? Is this the kind of situation where they

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Thank you for your kind words and support. It makes such a difference to know I'm not alone. ((Hugs)) and prayers out to all!
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Reply to goodenergy
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Thank you for sharing this experience, and especially for how you reconciled your mother's passing. You show very compassionate but logical rationalization of the whole unpleasant experience, and are a model for coming to terms with what inevitably would happen.

Thank you also for sharing your insights and the good life you had with your mother. I hope those memories continue to comfort you as you move forward into a different life phase. And may you continue to be at peace.
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Reply to GardenArtist
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I'm so sorry for your loss as well,. Your mom is now at peace, if you can take comfort in that.
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Reply to shad250
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I'm so sorry for your loss. Thank you so much for coming back to tell her story. (((((Hugs))))))))
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Reply to BarbBrooklyn
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My mom died peacefully 3 days after I posted this. It was an evolving situation, very confusing for me and stressful. I did make my peace with it by the end, though.

The main stressor for me was that the information I was getting from the doctor was clearly incorrect, yet she was the one issuing all the orders. This brand new doctor, who had never met my mom or me before, came in one day and declared my mom dying. The hospital had just released her saying she was fine. I had seen her the previous day and she was fine. The doctor declared she was dying of a heart condition, because her heart rate was sometimes all over the place -- from 40 up to 150. What I knew and the doctor didn't was that this would happen to my mom temporarily any time she was in the hospital or if she had some kind of other condition, like a UTI or a cold. She had both at this time.

Every time a new doctor would see her, they would insist that this heart condition was permanent and life threatening, short or medium term. Then it would go away completely in a day or two. Every time, the same thing. They would never listen to me about past experience, and they were ill informed about sporadic afib, which was the accurate diagnosis.

So the same thing happened again -- they diagnosed her with a deadly heart condition. The fact is she had a terrible cold and flu, which I also developed -- it was extremely unpleasant, and appetite killing. They diagnosed her as dying because she refused one meal. Then they started giving her morphine because her lungs were congested from the cold and she breathed with her mouth open and made noise.

The doctor said they were only giving her morphine as needed and infrequently. Then I'd go see my mom and the nurse would rush to tell me they were giving her maximum morphine all the time to make sure she was comfortable. When I told them to stop, they insisted it was needed so she could breathe. When hospice came, they insisted morphine was needed because the doctor had ordered it. I decided at that point not to sign on with hospice.

All I wanted was for them to stop the morphine, pause and get enough clinical information to see what was really going on in my mom's body. They refused to do that. For reasons I can't begin to comprehend, they refused to see she had simple bronchitis. They offered to send her to the hospital, but the hospital didn't want to take her because was diagnosed as dying and the hospital now has a preference to keep dying people in the nursing home.

For three days, the doctor insisted that my mom's organs were failing along with her heart. She said my mom could not eat or drink. Yet when I asked about her vitals, I saw they were all fine. And she was very thirsty, sipping cups of water when offered and asking for more. The doctor simply refused to admit this was the case, saying she could not drink and so was not being offered water.

After 24 hours, the doctor agreed to stop the morphine and give my mom IV hydration to see what would happen-- I had to very strenuously argue with her to get her to do this, even talking to the palliative care department from the hospital to declare that it was legally possible because the doctor insisted it was not possible in the nursing home setting. But she never did it.

She disappeared for 24 hours to her son's graduation, and there was no backup doctor available. I was told none of the other doctors could help because they never gave orders for each other's patients.

The fourth day when she returned I finally got the doctor to look thoroughly at my mom's chart and the doctor said, "Oh, you're right. Your mom's heart rate has been mostly normal for several days." I also got the one nurse that had seen my mom drink to tell the doctor that my mom was drinking water and to put it in her chart, so she could be offered water regularly on all shifts.

I went there that night and my mom died at midnight. The night shift was very caring, was regularly giving her water and was not giving her morphine. So it seems like I was finally able to halt or slow down their inappropriate actions. I don't know for sure if the morphine and lack of food and water, or just old age was the primary factor in her death.

What happened was probably not medical malpractice -- it was most likely within the bounds of standard nursing home medical care for a 96 year old woman with a wild heart rate who was making noise while breathing. It was also unskillful and unfortunate in the context of a generally highly rated and caring facility. It never would have happened that way if the doctor who knew my mom and me, and who we had met with repeatedly to discuss our preference for as few medications as possible, was not on medical leave.

Over the past two weeks of processing what happened, I've been able to come to a better acceptance by remembering how awful my mom's quality of life had become due to her progressing dementia and memory loss. She was also severely depressed because, after multiple falls and declining brain capacity, she could no longer walk at all. Her brain was having trouble communicating with her legs and feet, and she could barely control them to move them forward My mom had always been very active and even athletic -- she was still riding her bike at 85 -- and she appeared to be in a state of shock each time she realized she was having so much trouble moving her legs.

Her condition was becoming too much for me at home. Her memory loss was making her more fearful and anxious and she was calling out for "help!" more and more frequently. She had been in the rehab on an annual basis for the last 5 years because of falls, and she really enjoyed the facility -- in that sense, I felt the nursing home would give her a safer place and better quality of life. She really didn't want to go to a nursing home, though, and she began to say so.

In talking to others about the death of their parents, it does often seem that people "check out" on a soul level when they're ready to go. I know it's quite possible this came into play with my mom as well -- since some of us were giving her water, she could have lived through the unfortunate 4-day episode of morphine and misdiagnosis if she were stronger, had a stronger will or desire to live. I also know on a personal level, she's most likely at much greater peace now than she had been for some time.

Even though the past four years of caring for my mom have been very difficult for me, I'm so glad that I took her into my home and gave her the best quality of life that I could. Until her mental state declined in the past six months or so and she became so vacant, she thanked me for caring for her every night before sleep. We had nice holidays together, enjoyed each other's company, gardened together each summer, and shared a love of public television nature shows in the evening. All the way to the end, my mom never failed to enjoy or appreciate the Andy Griffith Show and ice cream. These are the things I'm choosing to remember.
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Reply to goodenergy
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Good, ((((((hugs)))))).

As you say, your mom's heart is failing. She's dying not due to lack of food or water, but because her heart is not pumping enough blood to oxygenate the organs that process nutrients and liquids.

I'm going to assume that you are most interested in her comfort at this point, and not causing needless suffering, yes?

You want to keep her mouth moist with those sponges swabs, not with liquid, which might cause choking and aspiration. Morphine easing breathing and prevents her from dying gasping for breath. Are they giving her something for anxiety?
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Reply to BarbBrooklyn
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When my mother was dehydrated I got my mom to drink Pedialyte. Also every time my mom got worse, I gave her bone broth I told her it won't taste good because it was medicine. But it did help her.
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Reply to Dat1917
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Being able to speak to someone is an aspect about which I learned a lot earlier this year. I called a number of hospice companies, with reps who asked various questions, some of them personal regarding my father. Later, when I decided to have palliative care and then hospice (if appropriate) at the rehab facility he was in, one of the hospice reps from a non profit religious denomination told me she couldn't ask any questions re my father's health until they were hired.

I was really shocked b/c the others (all for profit companies) had no hesitation whatsoever in asking personal questions.

So I think that's why the rep can't speak with you at this time on a personal level regarding your mother's health.


My father also couldn't accept much liquid as the end grew near. We used swabs, little sponges on a lollipop like stick, which moistened the lips and mouth. He did drink as much water as he could, but at that stage it was difficult to do anything.

Morphine as I understand does suppress the respiratory system, and she's probably experiencing failure of other organs which could complicate the whole situation.

I would try the swabs and if the facility doesn't have them, ask if you can wet a washcloth and put it on her lips.

I feel your pain - about 6 weeks ago I was where you are now. I hope that your mother passes peacefully and with as little discomfort as possible.

I think ice chips might cause her to choke if she's lost some swallowing ability.
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Reply to GardenArtist
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goodenergy, there is a possibility that your Mom's body can no longer accept food or water. If given any water, it would just sit in the kidneys and that would be painful. If given any food, it would sit in the stomach, another painful situation.

Remember this is your first rodeo so everything is new and confusing. The Rehab facility has been on hundreds of rodeos so the Staff knows what to look for and how to react.

The morphine dosage is the same as one would get when they have a serious surgery. It helps dull the pain, and helps with breathing.

I am also a critic of 21st century medicine, I feel everyone young and old are being over medicated.
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Reply to freqflyer
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... give ice chips? I was going to say... I spoke to the doc about being moderate with the morphine, and I spoke to nurse to make sure to offer her hydration regularly...
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