It Gets Worse
We've finally worked out a real schedule for each of us to look after Mama. My sister and sister-in-law alternate weekdays (also alternating Fridays). I am there in the evenings to put her to bed (excepting Tuesdays). I think I am responsible for Saturday afternoons. I don't know who is responsible for Sunday afternoons.
Mama had a terrible evening this Tuesday night. She didn't go to sleep until 5:00 Wednesday morning and was then up around 9:00. Daddy didn't really sleep any of that time either. He claims that he gave her the sleeping pill and that it didn't work. Since he put her to bed by himself, I suspect that what he gave her was not the sleeping pill. She always falls asleep after I give her the sleeping pill. Last night, she was out very easily, but she was also pretty tired from not sleeping the previous evening.
I got to see the hospital bed and the wheelchair. The wheelchair is too big to fit through her bathroom door. That caused an ordeal last night. She wanted to try to go to the bathroom before going to bed. I'll recap the highlights of why going to the bathroom is an issue for Mama: tumor wrapped around her intestines, intestines closed off, nothing can get through, if nothing can get out, we have to stop putting stuff in, so no food for weeks, no poopie for weeks and while Mama doesn't understand most of the situation, she understands that a person who doesn't poop isn't healthy. So she thinks that just getting on that toilet and sitting there for a while will make the poop come out. It doesn't.
Last night when she insisted on "sitting" for a while, I let her do so even though I knew it wouldn't do any good. But I had to put her in the little bathroom. Getting her out was almost impossible. By the time she was "done," she didn't have enough energy to stand on her own. The bathroom isn't really big enough for me to get in there to hold her up. I had to get Daddy to drag/lift her away from her stance in front of the sink. She was so worn out (or confused) that she couldn't follow any of our simple commands. I turned on the water and told her to wash her hands (while she was leaning over on the sink) but she didn't seem to understand what I was telling her to do. When I finally pulled her hands out far enough to wash them, she grunted a weak, "Oh." Then Daddy tried to tell her to let go of the door jamb so they could get out of the bathroom. She didn't even acknowledge that she'd heard him. I reached in and removed her surprisingly still strong grip so that she could proceed past the threshold.
I got her into her bed and turned on her side. She doesn't like to sleep on her side in bed. But she loves to sleep on her side on the couch. But right now she has a really big, very nasty bedsore on her bottom (where her spine meets her hips) from sitting and sleeping in the same position. Frankly, I am shocked that she developed this sore in what seems to be such a short period of time. I did some research on "pressure sores" and found out that losing a significant amount of weight increases while being in the same position increases the likelihood of getting a sore. The nurse says that her sore is not infected, but that she absolutely can not put pressure on it anymore. When she lays on the couch, she is on her right side. When she lays in her bed, she is on her left side. We have to keep track of that now because in trying to avoid laying on her back, we don't want to cause another sore on her hips or side.
She worries about the medications we give her. I don't know what all the meds are called. I can generally list what the meds she's taking do: a laxative, a softener, a sleeping pill, and something to reduce the inflammation around her tumor. But the only ones I can identify without looking at the bottle are the sleeping pill and that anti-inflammatory. Those are the ones I give her at night. She's down from four pills to two at night. Yet, she still asks me what they are every night. Every night, I tell her, "One is your sleeping pill and I don't know what the other is. It's in your bedtime pill box. The nurse laid it out for you." Last night was the first time that I thought I was going to lose my patience with her ritual of reluctance. I tried to soften my annoyance by joking with her, "Mama, you're giving me a complex that you don't trust me. Do you think I would give you something that you don't need? Please just take the pills." She acknowledged that she trusts me, but explained that she needs to keep track of what she takes and when she takes it. Well, that's a hold-over from when we still letting her dose herself. We asked her to keep a written log of what and when she took (mostly because we couldn't let her miss her blood pressure medication). So there she is, lying in a hospital bed in her own room, with no pen, paper or journal, trying to keep a mental log of the medications that her family is giving her.
I am ashamed that I got annoyed. Here's an honest evaluation of the situation: I'm not sleeping much. I'm not stretching so leaning over to lift, move or support Mama makes my back hurt quite a bit. I got Mama perfectly situated in her bed *before* giving her her meds. So all that back pain had to be repeated after propping her up to take her pills. So I'm really frustrated at myself, not at her. And it is completely unacceptable to show any of that frustration to her. She's the one dying.
Mama had a terrible evening this Tuesday night. She didn't go to sleep until 5:00 Wednesday morning and was then up around 9:00. Daddy didn't really sleep any of that time either. He claims that he gave her the sleeping pill and that it didn't work. Since he put her to bed by himself, I suspect that what he gave her was not the sleeping pill. She always falls asleep after I give her the sleeping pill. Last night, she was out very easily, but she was also pretty tired from not sleeping the previous evening.
I got to see the hospital bed and the wheelchair. The wheelchair is too big to fit through her bathroom door. That caused an ordeal last night. She wanted to try to go to the bathroom before going to bed. I'll recap the highlights of why going to the bathroom is an issue for Mama: tumor wrapped around her intestines, intestines closed off, nothing can get through, if nothing can get out, we have to stop putting stuff in, so no food for weeks, no poopie for weeks and while Mama doesn't understand most of the situation, she understands that a person who doesn't poop isn't healthy. So she thinks that just getting on that toilet and sitting there for a while will make the poop come out. It doesn't.
Last night when she insisted on "sitting" for a while, I let her do so even though I knew it wouldn't do any good. But I had to put her in the little bathroom. Getting her out was almost impossible. By the time she was "done," she didn't have enough energy to stand on her own. The bathroom isn't really big enough for me to get in there to hold her up. I had to get Daddy to drag/lift her away from her stance in front of the sink. She was so worn out (or confused) that she couldn't follow any of our simple commands. I turned on the water and told her to wash her hands (while she was leaning over on the sink) but she didn't seem to understand what I was telling her to do. When I finally pulled her hands out far enough to wash them, she grunted a weak, "Oh." Then Daddy tried to tell her to let go of the door jamb so they could get out of the bathroom. She didn't even acknowledge that she'd heard him. I reached in and removed her surprisingly still strong grip so that she could proceed past the threshold.
I got her into her bed and turned on her side. She doesn't like to sleep on her side in bed. But she loves to sleep on her side on the couch. But right now she has a really big, very nasty bedsore on her bottom (where her spine meets her hips) from sitting and sleeping in the same position. Frankly, I am shocked that she developed this sore in what seems to be such a short period of time. I did some research on "pressure sores" and found out that losing a significant amount of weight increases while being in the same position increases the likelihood of getting a sore. The nurse says that her sore is not infected, but that she absolutely can not put pressure on it anymore. When she lays on the couch, she is on her right side. When she lays in her bed, she is on her left side. We have to keep track of that now because in trying to avoid laying on her back, we don't want to cause another sore on her hips or side.
She worries about the medications we give her. I don't know what all the meds are called. I can generally list what the meds she's taking do: a laxative, a softener, a sleeping pill, and something to reduce the inflammation around her tumor. But the only ones I can identify without looking at the bottle are the sleeping pill and that anti-inflammatory. Those are the ones I give her at night. She's down from four pills to two at night. Yet, she still asks me what they are every night. Every night, I tell her, "One is your sleeping pill and I don't know what the other is. It's in your bedtime pill box. The nurse laid it out for you." Last night was the first time that I thought I was going to lose my patience with her ritual of reluctance. I tried to soften my annoyance by joking with her, "Mama, you're giving me a complex that you don't trust me. Do you think I would give you something that you don't need? Please just take the pills." She acknowledged that she trusts me, but explained that she needs to keep track of what she takes and when she takes it. Well, that's a hold-over from when we still letting her dose herself. We asked her to keep a written log of what and when she took (mostly because we couldn't let her miss her blood pressure medication). So there she is, lying in a hospital bed in her own room, with no pen, paper or journal, trying to keep a mental log of the medications that her family is giving her.
I am ashamed that I got annoyed. Here's an honest evaluation of the situation: I'm not sleeping much. I'm not stretching so leaning over to lift, move or support Mama makes my back hurt quite a bit. I got Mama perfectly situated in her bed *before* giving her her meds. So all that back pain had to be repeated after propping her up to take her pills. So I'm really frustrated at myself, not at her. And it is completely unacceptable to show any of that frustration to her. She's the one dying.
Laughter is finally in town. Her sister was visiting her this week and broke her wrist badly while playing tennis. They weren't sure if she was going to do her surgery (I said it was bad) down there or up here. Thankfully, they decided to do it up here and Laughter came home with them. She wants to see Mama tonight. I've tried to prepare her as much as possible for what she's going see. Mama looks really bad now. She's going to get the worst of it because she's going over there with me at the end of the day. Mama is so worn out by that time, that you can't visit with her. I tried to explain that we will go through the "putting to bed" ritual. She says that she will be OK. I don't think she will - she loves my mother too much and has never had to deal with sickness like this before. But maybe it's me who won't be able to handle having her there. I can handle all this with my siblings. But having Laughter there will add a new emotional layer for me. She's the one with whom I experienced childhood, not my own siblings. I hope I'm able to stay focused on my tasks.
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