ElmTree of Bliss
May. 8th, 2019 06:47 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
ismoI haven't had the energy to put together a post in the last three days, but I'm home now and ready to give it a try. Sunday at noon, we were just sitting down to the Board of Trustees meeting and potluck, when I got a call from the Duchess. The long-term care place had called her because Mother's oxygen levels were dropping and they thought she was having heart problems. They wanted to send her to the hospital, which we've told them we don't want. The Duchess was on the way there, and we immediately followed, as soon as we could pack a bag in case we had to stay overnight.
By the time we arrived, Mother was much better. They had put her on oxygen, which seems to help even though she frequently tries to remove the nasal cannula. She says it "isn't pretty." We were with her till about 7:30, when she had finished her dinner and settled down to sleep. The speech therapist thinks she has a swallowing problem, so they have put her on a soft food diet, and this does seem to make it easier for her to eat. All her liquids have to be thickened, which is a precaution against aspirating, though how that works, I am not sure. It doesn't seem to bother her. She is drinking more readily than she was before. The staff seem to have a lot of confusion about various things, including her ability to eat. Apparently in the morning, she was too groggy to swallow her pulverized pills in applesauce, so they thought she wasn't able to eat any more. The Duchess and I are like, "Come back later--DUH." And "Have you seen her chowing down when she's awake? This is not a woman who has lost interest in food." She does need a lot of prompting and occasional assistance when the fork gets mixed up somehow, or she gets her fingers into the soup, but she certainly can eat. HOWEVER--when they weighed her, she was down to 98.6 pounds. As the nurse said, "That's supposed to be your temperature, not your weight!" So there is some kind of a problem. Perhaps she just isn't able to assimilate food well any more.
We went down to Main Street and had a quick bite to eat, then crashed at a nearby motel. I had a miserable night of stomach pain from stress and eating too late. We wanted to go back to my Mother's place early, in case the doctors came by. We were sitting by Mother's bed, watching her sleep peacefully, when we got a panicky call from the Duchess, who was on her way over, and had just received a call from the social worker, saying they wanted to put Mother in hospice IMMEDIATELY, that she was having a rapid decline, etc. I was puzzled, because she seemed fine to me. We never did find out what all the fuss was about. One of the caregivers told me Mother had recently taken to waking up at 3 am, and getting "really angry." She would do things like ripping off her depends, which is never popular, and they'd have to get her out of bed to clean things up. Perhaps this explains why she's so sleepy in the morning. Later conversations with Mother appeared to indicate that she might have ripped her nasal cannula apart. I wouldn't put it past her, though this also could be just a fantasy of what she'd like to do. Anyway, these midnight tantrums could explain why the staff is freaking out.
We had a care conference with various staff, at which they said Mother meets the criteria for hospice. They said they could have an information person from hospice meet us there in the afternoon. The whole idea of hospice has been a very tricky one to achieve consensus about among the siblings. Queenie and Mr. Science were present by phone for the conference, and eventually we agreed to proceed, in the hope that it may improve the quality of care. The PA who was there in lieu of a doctor proposed their default step of stopping all medications, but the Duchess wanted them to keep on with her blood pressure pills and a couple of other things, and I agreed, even though I'm not sure it makes that much difference. However, the Duchess is very worried about hastening the end at all, and is indignant that they aren't going to give Mother vitamins any more. Those vitamins are bulky and even when they're chopped up, it's pretty hard to get her to take them. So I think it's okay, but the Duchess thinks we're killing Mother by not giving her vitamin D. It is a pretty hard line to walk.
I pointed out (as I have been doing repeatedly) that although everyone speaks of her having "dementia," she has never in fact been officially diagnosed. It's not that I don't believe she has it--I just want a competent professional to assess her and say so if she does. However, this went nowhere as it always does. The PA has told us a couple of times that he would have a specialist assess her, but he has never done it, or if he has, we don't know about it. The lack of communication is quite maddening.
We sat with Mother while she ate lunch, and then had a conference with the hospice rep. I signed the paperwork to admit her, because Mr. Science is in Tennessee at the moment and I'm listed second on their power of attorney papers. I had a feeling that somehow or other I would end up being responsible for this. It's true we all agreed, but there is something symbolic about it, too. I also was spontaneously elected to be the one to carry the news of my father's diagnosis with Alzheimer's. I don't really like it, but I guess it's okay, because these things bother them more than they do me, so I might as well do it. Mr. Science is heartbroken and thinks Mother will die in a week from dehydration. This is so not true. I have no idea when she will die, but it's not going to to be next week. I am willing to bet a shiny new dollar on that, as the Sparrowhawk would say.
The next step was having a hospice nurse evaluate Mother so they can come up with a care program for her. We weren't sure when that would happen. The Duchess wanted me to be there if possible. So we decided not to go home, but to wait until 5 to see if they'd call back with a time. Around 4, I persuaded the Duchess to go home for a break. The conferences made it a really grueling day, and she looked exhausted. I said we would take a little break while Mother was sleeping, and then come back and sit with Mother while she had dinner. She said we could stay at her house if the hospice nurse could come on Tuesday. The Sparrowhawk and I walked down to Main Street--always a bit longer than I thought!--to get a snack and raise our blood sugar. It started to rain, but I had an umbrella. While we were sitting in the coffee shop, hospice called and said the nurse could come at noon on Tuesday.
Mother needed to be cleaned up again, so we asked the CNA to put her in her chair to eat dinner. There was a note on her bulletin board directing someone to take a stool sample to check for C-diff. The note had been there for days. Finally one of the good CNAs noticed it, and made sure the sample was finally taken. I don't think Mother has C-diff, for various reasons of my own. But if they suspect she does, it's pretty damn stupid not to find out immediately. C-diff in a nursing care facility is a major public health threat and needs to be dealt with efficiently. It took a long time for Mother to consume her dinner, using her own wobbly fork, but she ate it all. Finally about 7:30, we were able to drive down the country roads to the Duchess's house. She had saved a bit of dinner for us, and we rested comfortably in their spare room, with a window open to the cool, rainy breeze and the night sounds.
Tuesday we arrived before noon and found Mother deeply asleep. It took awhile to wake her up. We wanted her to be in good shape for the evaluation. Once she woke up, she was able to respond to our prompting and talk with us. She lit up when a chaplain she knows and likes came in to check on her. The nurse administrator told Claire she had come in earlier in the morning and found Mother in her wheelchair, brushing her teeth, and that Mother greeted her cheerfully. The nurse said "Your Mother is amazing!" Yes, we KNOW. This is what we keep trying to tell people. She is surprising and unpredictable, and even when they see her at her lowest, they can't write her off. Her quality of life is poor right now, and she probably would be better off not living a long time like this, but she has such a fund of vitality somewhere in that 98 pound body that we can't make assumptions. In a way this is wonderful, and in a way it is terrible and heartbreaking, but it is what it is.
Finally the hospice nurse arrived to do her evaluation. She was cheerful and helpful--perhaps a little too much so, because the Duchess and I thought she'd never stop talking. It took a long time to get all the paperwork done. Meanwhile Mother's lunch finally came, but we were too busy to help her eat. She dozed off in the middle of it. When the nurse left, we had to send it back to be re-warmed. Even then, Mother didn't eat a whole lot of it, but she ate about half of the mac and cheese, and all of her high-calorie ice cream supplement. We left about 4:30--just in time for the post-work traffic, as usual. Whee. And a traffic stoppage several miles long because they're finally trying to fix the terrifying potholes on I-96.
So to sum up, my mother is in hospice but not dying, and we're finally home. I'm stunned and my mind is working very slowly. My living room is still littered with half-empty boxes. The Duchess has decided to be at my mother's place for lunch at least several days a week, so she can make sure Mother gets to eat a complete meal. I'll probably go there a day or two each week to give her a break. It remains to be seen if hospice care is actually good for anything. The Sparrowhawk and I have volunteered to spend Mother's Day with Mother, and probably the following Monday.
By the time we arrived, Mother was much better. They had put her on oxygen, which seems to help even though she frequently tries to remove the nasal cannula. She says it "isn't pretty." We were with her till about 7:30, when she had finished her dinner and settled down to sleep. The speech therapist thinks she has a swallowing problem, so they have put her on a soft food diet, and this does seem to make it easier for her to eat. All her liquids have to be thickened, which is a precaution against aspirating, though how that works, I am not sure. It doesn't seem to bother her. She is drinking more readily than she was before. The staff seem to have a lot of confusion about various things, including her ability to eat. Apparently in the morning, she was too groggy to swallow her pulverized pills in applesauce, so they thought she wasn't able to eat any more. The Duchess and I are like, "Come back later--DUH." And "Have you seen her chowing down when she's awake? This is not a woman who has lost interest in food." She does need a lot of prompting and occasional assistance when the fork gets mixed up somehow, or she gets her fingers into the soup, but she certainly can eat. HOWEVER--when they weighed her, she was down to 98.6 pounds. As the nurse said, "That's supposed to be your temperature, not your weight!" So there is some kind of a problem. Perhaps she just isn't able to assimilate food well any more.
We went down to Main Street and had a quick bite to eat, then crashed at a nearby motel. I had a miserable night of stomach pain from stress and eating too late. We wanted to go back to my Mother's place early, in case the doctors came by. We were sitting by Mother's bed, watching her sleep peacefully, when we got a panicky call from the Duchess, who was on her way over, and had just received a call from the social worker, saying they wanted to put Mother in hospice IMMEDIATELY, that she was having a rapid decline, etc. I was puzzled, because she seemed fine to me. We never did find out what all the fuss was about. One of the caregivers told me Mother had recently taken to waking up at 3 am, and getting "really angry." She would do things like ripping off her depends, which is never popular, and they'd have to get her out of bed to clean things up. Perhaps this explains why she's so sleepy in the morning. Later conversations with Mother appeared to indicate that she might have ripped her nasal cannula apart. I wouldn't put it past her, though this also could be just a fantasy of what she'd like to do. Anyway, these midnight tantrums could explain why the staff is freaking out.
We had a care conference with various staff, at which they said Mother meets the criteria for hospice. They said they could have an information person from hospice meet us there in the afternoon. The whole idea of hospice has been a very tricky one to achieve consensus about among the siblings. Queenie and Mr. Science were present by phone for the conference, and eventually we agreed to proceed, in the hope that it may improve the quality of care. The PA who was there in lieu of a doctor proposed their default step of stopping all medications, but the Duchess wanted them to keep on with her blood pressure pills and a couple of other things, and I agreed, even though I'm not sure it makes that much difference. However, the Duchess is very worried about hastening the end at all, and is indignant that they aren't going to give Mother vitamins any more. Those vitamins are bulky and even when they're chopped up, it's pretty hard to get her to take them. So I think it's okay, but the Duchess thinks we're killing Mother by not giving her vitamin D. It is a pretty hard line to walk.
I pointed out (as I have been doing repeatedly) that although everyone speaks of her having "dementia," she has never in fact been officially diagnosed. It's not that I don't believe she has it--I just want a competent professional to assess her and say so if she does. However, this went nowhere as it always does. The PA has told us a couple of times that he would have a specialist assess her, but he has never done it, or if he has, we don't know about it. The lack of communication is quite maddening.
We sat with Mother while she ate lunch, and then had a conference with the hospice rep. I signed the paperwork to admit her, because Mr. Science is in Tennessee at the moment and I'm listed second on their power of attorney papers. I had a feeling that somehow or other I would end up being responsible for this. It's true we all agreed, but there is something symbolic about it, too. I also was spontaneously elected to be the one to carry the news of my father's diagnosis with Alzheimer's. I don't really like it, but I guess it's okay, because these things bother them more than they do me, so I might as well do it. Mr. Science is heartbroken and thinks Mother will die in a week from dehydration. This is so not true. I have no idea when she will die, but it's not going to to be next week. I am willing to bet a shiny new dollar on that, as the Sparrowhawk would say.
The next step was having a hospice nurse evaluate Mother so they can come up with a care program for her. We weren't sure when that would happen. The Duchess wanted me to be there if possible. So we decided not to go home, but to wait until 5 to see if they'd call back with a time. Around 4, I persuaded the Duchess to go home for a break. The conferences made it a really grueling day, and she looked exhausted. I said we would take a little break while Mother was sleeping, and then come back and sit with Mother while she had dinner. She said we could stay at her house if the hospice nurse could come on Tuesday. The Sparrowhawk and I walked down to Main Street--always a bit longer than I thought!--to get a snack and raise our blood sugar. It started to rain, but I had an umbrella. While we were sitting in the coffee shop, hospice called and said the nurse could come at noon on Tuesday.
Mother needed to be cleaned up again, so we asked the CNA to put her in her chair to eat dinner. There was a note on her bulletin board directing someone to take a stool sample to check for C-diff. The note had been there for days. Finally one of the good CNAs noticed it, and made sure the sample was finally taken. I don't think Mother has C-diff, for various reasons of my own. But if they suspect she does, it's pretty damn stupid not to find out immediately. C-diff in a nursing care facility is a major public health threat and needs to be dealt with efficiently. It took a long time for Mother to consume her dinner, using her own wobbly fork, but she ate it all. Finally about 7:30, we were able to drive down the country roads to the Duchess's house. She had saved a bit of dinner for us, and we rested comfortably in their spare room, with a window open to the cool, rainy breeze and the night sounds.
Tuesday we arrived before noon and found Mother deeply asleep. It took awhile to wake her up. We wanted her to be in good shape for the evaluation. Once she woke up, she was able to respond to our prompting and talk with us. She lit up when a chaplain she knows and likes came in to check on her. The nurse administrator told Claire she had come in earlier in the morning and found Mother in her wheelchair, brushing her teeth, and that Mother greeted her cheerfully. The nurse said "Your Mother is amazing!" Yes, we KNOW. This is what we keep trying to tell people. She is surprising and unpredictable, and even when they see her at her lowest, they can't write her off. Her quality of life is poor right now, and she probably would be better off not living a long time like this, but she has such a fund of vitality somewhere in that 98 pound body that we can't make assumptions. In a way this is wonderful, and in a way it is terrible and heartbreaking, but it is what it is.
Finally the hospice nurse arrived to do her evaluation. She was cheerful and helpful--perhaps a little too much so, because the Duchess and I thought she'd never stop talking. It took a long time to get all the paperwork done. Meanwhile Mother's lunch finally came, but we were too busy to help her eat. She dozed off in the middle of it. When the nurse left, we had to send it back to be re-warmed. Even then, Mother didn't eat a whole lot of it, but she ate about half of the mac and cheese, and all of her high-calorie ice cream supplement. We left about 4:30--just in time for the post-work traffic, as usual. Whee. And a traffic stoppage several miles long because they're finally trying to fix the terrifying potholes on I-96.
So to sum up, my mother is in hospice but not dying, and we're finally home. I'm stunned and my mind is working very slowly. My living room is still littered with half-empty boxes. The Duchess has decided to be at my mother's place for lunch at least several days a week, so she can make sure Mother gets to eat a complete meal. I'll probably go there a day or two each week to give her a break. It remains to be seen if hospice care is actually good for anything. The Sparrowhawk and I have volunteered to spend Mother's Day with Mother, and probably the following Monday.
