Hospice medical care.

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My 96 year old Aunt who was stable and doing well, slipped into a frightening dementia within two days. She was "picking fairies" and hallucinating, anxious and frightened, and very "speedy"...she was constantly doing things fast, including trying to walk and move in ways that would have her fall.
She received one on one care at the assisted living facility where she lived.
I took her to the hospital. They said she was "slightly dehydrated" and that her medicines had backed up. They stopped her meds, pumped her full of fluid and by the next day I had my Aunt back. She was exhausted from not having slept and being "busy" for three days and nights, but she was lucid and responsive and made sense. They started her meds again and sent her home. By mid day of the next day, the symptoms returned. Again, one on one care by the facility until I could get her to the doctor. (When I called for help, she was given an anti-psychotic). I was frantic. It was the meds, right? Please don't give her more. At the doctor's office, the doctor said she was done. Find a memory care facility, pump her full of sedatives and sign her up for hospice. I had to promise I wouldn't take her to the emergency room again as hospice had all sorts of drugs to handle any symptoms. I asked for her meds, specifically Lyrica and Tramadol to be discontinued. She had had an overdose of Lyrica once that caused the same type of hallucination she was having, and I have taken tramadol for pain, and felt "speedy", so I wanted both of those drugs stopped to see if that helped. I was told it would not make any difference because she had been on those drugs for years and what we were seeing was a sudden onset of increased dementia. The last time I had been told that, my mother's kidneys had shut down causing dementia type symptoms. I didn't believe it then, and I didn't believe it now. I pressed. I told the doctor if the drugs could be causing this condition, then stopping them would be the right thing to do, and if it made no difference, then we could start them again. He humored me. Reluctantly. Within 24 hours Aunt was back to normal. She slept for 24 hours, and I had people with her 24/7 in addition to the facility staff, and she gradually, over three weeks, came back to her normal pleasantly confused, happy self. What a scary event. Her system simply had changed in its ability to clear the meds and they built up over time. I saw the same thing happen with my mother. This is not an unknown thing, and I'm not the only smart caregiver. Please trust yourselves. I felt like the hospital people knew, but they didn't follow through. The doctor gave up (and I know he is a caring good man and doctor who has helped my Aunt a lot and showed genuine affection for her). I actually told him I thought "we" were giving up too soon. In the midst of this panic I was going through, the facility administrator told me that hospice would straighten out my Aunt's med issues. To get them in there to help. So I signed them up. I learned later they don't have anything to do with that type of thing. I had a terrible time with the hospice people. A chaplain who quizzed my Aunt until she cried because with her confusion she didn't know the answers, and the people who came who announced they were from hospice, causing my Aunt to believe she was dying and scared her to death. I know hospice is wonderful. But in this case we were referred in error, and what my Aunt needed and what hospice provides did not mesh. I hadn't realized hospice is used now to treat chronic conditions over periods of six months that can be renewed or extended for years. We had to promise not to ever take my Aunt to the hospital ER again. Medicare pays 100% for hospice to handle chronic conditions. Medicare doesn't pay much to HMOs for ER visits. It's a way to reduce costs. But we were certainly pushed that way too soon. I liked the hospice people, but realized they were not really aware of the perception that exists in certain generations of what hospice is and how you really can't change that perception in people with diminished capacity to process new information. That same week, a gentleman in the same town committed suicide after being told he was to go on hospice. I got a frantic call from his step daughter who had just talked to her mother. Her mother called because she found a suicide note, and then my friend heard the gunshot while she was talking to her mother. I know hospice people are there to help and do a world of good, but this is a difficult time in the changing perceptions of what hospice is for patients and caregivers. They've changed hospice's role from imminent death care to rather long term chronic condition management. I felt like the world wanted my Aunt to die, and I was the only one who saw it was a mistake. How do I make people hear me? How do I tell you that your words are instilling fear and hopelessness when you mean just the opposite?


I think that you did an awesome job of making people hear you. Your aunt is very lucky to have you as an advocate. And thanks for sharing your story.

When the time actually does come for your Aunt, I hope you will consider Hospice again. My husband was on Hospice care for 5 weeks before his death. It was a very helpful experience. My mother has been on Hospice 3+ months. She is being discharged this week because she has improved so very much more than expected after she broke her hip.
Actually, Hospice rules have tightened up and it may be harder to get her back on. If her kidneys are failing, you will be going through this dehydration episode again, she will need fluids again. Eventually even the fluids won't work the way you want them to, they leak into the legs or lungs. Be aware.
We have had a similar experience with our mom when the subject of hospice came up during a Dr. visit about 6 months ago. Mom got a frightened, sad look on her face and asked us if we thought she wasn't "worth saving". Her reaction was so pitiful it broke my heart. The word hospice means different things to different people but in general, mom (83) understood hospice to mean her death was eminent. She is seriously ill and very complicated but her death is not eminent. It took Quite a while to undo the misunderstanding. Now I'm worried, because she is much sicker, that she will have the same reaction if the subject comes up again. She is dieing of copd, chf, stage 4 kidney desease, and an incurable skin disorder Any advice about how to bring up this delicate subject?
the terminology needs changed . every mention of the hospice people is a reminder that a person has been deemed terminally ill . maybe we should just call them the nosy , bottom feeders of the health care industry with the credentials they got from a cracker jack box and the hellish employee turnover rates ..
I know I would be more comfortable with a change in name. A name that doesn't say unequivocally that you are almost dead and I'm here to help with that. I personally appreciate coming to terms with your life and leaving on good terms with God and family, and all the good that can come from that spiritually. But my Aunt's beliefs are different. She believes you keep going until God calls you. And you don't give up. And you don't go out of your way to know something. My Aunt's mother had lymphoma and my Aunt never told her she had cancer because she would "give up". She knew the word cancer, to her mother, was a death sentence. Just as I know the word hospice means the imminent end of life to my Aunt.
Perhaps in a generation or two we will have come to terms with end of life processes. But now, I think it's an issue we need to be sensitive about.
I don't know how to bring it up with my Aunt again. I don't think I will. I don't think hospice is the right thing to do for my Aunt. Her husband was at home until he died. Aunt relied on her church and faith to get her through and hospice was not involved. I think that tells me what I need to know about caring for her..
If the situation warrants the need for meds, then I will have them in for the very end, but for chronic condition management, I think in this case it's a bad fit.
I am not a fan of hospice care in my town, as there is ONLY one hospice company and it is all "in home". The nurses drowned my mother and I had to preform CPR on her until the ambulance arrived (they didn't even know CPR...).

If you can find a good hospice care, go for it. Otherwise, in some states and in some towns...the ONLY hospice nurses are actually NOT good. They don't have to be, because there is no other company to compete with them. I think my situation might be more terrifying to some people though, simply because it is a SMALL town. If this town was closer to the real world, certain things wouldn't fly...but since we are in the middle of nowhere......well...there ya go.

Yes, hospice care gets a bad rap. But, for a reason. Nursing homes get a bad rap too. For a reason. To each their own. There are pros and cons for everything.

I will tell you that a friend of mine, his father had issues almost exactly like my mother. His father was on in home hospice care, and his nurses were FANTASTIC! Sadly, it's across the country...so we couldn't use the same hospice company...oh well. But, they were amazing. Even when his father was dying, his nurse showed up at the hospital to say goodbye. That is how close she was to the family. It meant a great deal to them.

I think for everyone, and their loved ones, it is different. If a hospice is great for your family, do it. If a nursing home is great for your family, do it. As long as your loved one is being taken care of, that is ALL that matters.

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