Is she dying?
Yesterday, Mom seemed a little out of it. (She is 94 and has days like that.) She slept a lot during the day, went to bed early, and slept all night (unusual). This morning, the caregiver said she was out of it. She was having trouble walking and didn't eat much. At noon, she had a banana and some Boost. Then she went to sleep in a chair. She looked a little antsy in her sleep (dreaming). Then, woke up and said she didn't feel well. Her BP was fine -- 121/63. She still had a hard time walking (very weak), but I put her in bed, where she went back to sleep. I called the on-call hospice nurse to have them send someone out to see if there was something really going on that would point to end of life. Mom woke up a little and I wanted to change her pants, which she said, "Yes" to, but then she grabbed hold of her pants so tight that I couldn't pry them off (but never opened her eyes). She didn't want me to change them. That doesn't sound like someone who is dying, does it? The only other thing I told the hospice nurse was that her urine was cloudy. UTI possibly?
Holding tightly to her pants may not mean she doesn't want them changed. I don't know if there is a name for it, but sometimes dementia patients do the opposite of what they want to do, apparently due to confusion about the message getting to the brain. The brain is getting some kind of message about pants, but can't interpret the suggestion.
"Do you want me to take that spoon?"
Yes
"Open your hand to release it"
(gets death grip on spoon.) OK
"Hand the spoon to me, please."
(Sticks hand with spoon under his arm." OK
The hospice nurse came tonight. Right before that, Mom "woke up" and seemed more alert. (She also let me change her pants then...) The nurse just checked her vitals -- BP and heart -- and said they were fine. I did mention about the cloudy urine when I called,
but forgot when the nurse came.... Like what was said before, it is surprising that there is no other symptoms, like fever when they have a UTI. (Hospice doesn't check for fevers...)
I don't want to say that I am not happy with hospice, but I am not sure what their purpose is at this point since Mom is not "actively dying." They are doing what they are supposed to do. But, there is no quality of "life." It is only quality of death. I don't know if Mom is close to death. She has aphasia. She has not been diagnosed with anything else. And, hospice isn't interested in finding out if there is anything else going on as far as that goes. Medicare frowns on doing anything curative while a person is in hospice. Yes Mom is 94, but 6 months ago she was walking like she was over 10 years younger. I want to be realistic, but unless her heart or lungs or kidneys show signs of giving out, it is hard to see her as on her death bed. We still go out to the store (when she is walking well enough).
I was doing some research about palliative care and found that a local hospital provides that type of care. They showed the comparison of what they do vs. hospice. They focus on quality of life (no matter the age). They will provide family support and treat diseases. (I.e., there is speech therapy for people with aphasia). I think I will contact them on Monday. Maybe they can do an evaluation and we can see if there is something that Mom can benefit from or if she is really on her death bed. Others have posted that their Mom was 94 and declining, but was still alive 3 or more years later. Maybe it is a pipe dream, but I can't see being in hospice for 3 or more years when her body is not ready to die....
I was not very happy with my hospice group either. The nurse was great and they bathed mom in her bed twice that week, which I appreciated. But their communication with me was terrible. They kept coming in when I wasn't there and I didn't know they were coming. I had said I wanted to be there when they were there, or at least know they were coming. I was not happy. I'm just happy I had a very good nurse who kept me informed and was knowledgeable.
So in that final week, mom was both totally out of it and semi-comatose and then sitting in her chair, ready to eat and telling me she was back. So she was up and down in her final week of life. It was enough to make me crazy. I never knew what I was going to get when I went over to her place. I had no idea how long it was going to last and no idea where she was in the dying process until the last day. I hope that helps you.
I'm so sorry I know this is not an easy situation. I'm glad you have the support of the hospice nurse.
It is worrying. My grandmother had a heart attack at 92 years old. And was told her kidneys were failing. She passed two months later. My father was told he had heart failure at 84 and had 6 months to a year and yet passed three days later. I wish I knew sometimes.
I hope you find the answers you are looking for. Thinking of you.
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