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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?

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I think you did the right thing in calling hospice. Are they sending someone out? Let us know, please, what they do. We learn from each other.

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
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Yup, sounds like a UTI.
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Sounds more like a possible UTI. In my mom's final days, she'd sleep most of the time but then would occasionally pop up and be "normal" and say she was "back". But the overall arc of her behavior was more and more sleep and less awareness. Also very little eating. A bite here and there. A sip here and there. Let us know how your mom does.
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I wish I had known to trust my gut when I saw that my grandmother's urine was cloudy. She didn't have pain, or complain of anything, but the cloudiness bothered me. I didn't know then that elders can get raging infections, even sepsis, and be asymptomatic of pain and fever. Sure sounds like a UTI.
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blannie I am interested in more about what you said about your Mom sleeping all the time. Were here vitals "normal" during that time? Seems to me that things would change/slow down. But, with Mom, that doesn't seem to be happening. So, I would be curious as to what you (or others) have experienced. I also what to know what to expect. After one month of receiving in-home hospice care, her vitals have remained the same. Mom has slept a lot the past week. She also had a intestinal bug.

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....
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Oops. I misspoke... I did mention the cloudy urine to the hospice nurse. She said it could be that she hadn't had enough to drink the day before.... I will keep an eye on it....
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Mapotter my mom would sleep a lot. She'd also start to shiver/teeth chattering sometimes and appeared to be semi-conscious when she was sleeping. So she was sleeping but really out of it. I couldn't really rouse her. She also had Cheyne-Stokes breathing, which is where a person stops breathing for a short time, like sleep apnea, then over breathes to compensate. That's common with the dying process, according to the hospice nurse. That went on for the week she was in hospice until her temperature started dropping one day. Her feet got mottled (red and white) and the hospice nurse said she thought she'd pass that day. At that point, mom was completely out of it. I was keeping her lips moist and giving her morphine and Ativan. The Ativan helped with her legs moving and the teeth chattering. One time when she was conscious, I asked her about the chattering. She said she remembered doing that and couldn't stop. She didn't remember anything else about the time, so I looked at that as a blessing. Mom passed that night at about 11 PM or so.

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.
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Dear Mapotter,

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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The ups and downs are very hard to deal with. One minute you're sure they're in their final hours and then an hour later, they're up and perky. When my mom finally passed, I stood there at her bedside for probably five minutes, just contemplating that she was finally gone and half expecting her to start breathing again. I'd been through so many bouncebacks, it was hard to process that it was finally over. It's much harder on us than those who are going through it, I think. Your poor brother. That's hard on you too. I feel for you all!
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My MIL is in this place Blannie or ups and downs. Mostly downs. One day I feel we are really pulling through and she is talking clear understanding everything going on and really seems strong. We may do this for a week and then it happens that she completely backs up. I don't understand all of this and its really hard on the caregiver. I am not giving up on her. We've had so many say there is nothing you can do and maybe you should consider Hospice. I hear this everywhere. Its almost like thats the only answer. I am sorry but I want to push to do everything I can and push her to keep going as long as she can. It is tough on the down days to see her like this but I am not really for lets wait and see when she will die. Just my rant.
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