March 4, 2010
The Hospice Home Nurses came and evaluated Mama. They say she has about one to three weeks left. I spent quite a bit of time with her yesterday. We needed to move her room around and empty out everything except the bed because the room is so small. We needed to be able to walk fully around the bed so we pull her up in the bed when she slides down, and roll her from side to side. Moving Mama is a very difficult process. It takes both me and my husband to do it (bless him), and that's still with difficulty. Each day now, we have to pull her up as far as we can in the bed, and then roll her completely from on one side to her other side, and then on to her back, varying it from each day to prevent bedsores. Plus Mama cries the whole time we are doing it like it's just so painful it's killing her. I cry all the way through it.
Mama is barely able to talk now. I know she wants to tell me things, talk about her comfort or discomfort, ask for water, etc., but she is unable to do so. The only time she says anything very clearly is when she cries out when we move her. Any movement at all seems so painful for her. She shakes her a head a little bit for yes or no, but then she barely moves it and sometimes you cannot even understand that. I give her drinks of water off and on all day and try to feed her a little pudding. I don't want to think she might be suffering at all from thirst or hunger, even though the hospice people tell me she is not. But she is at the point where even a couple bites of pudding is hard because she does not swallow well. And she is barely able to suck fluid through a straw. She only takes a little sip after quite a struggle and then stops. We could put her IVs and a feeding tube, but Mama asked me not to do that before she became less coherent. Mama said the IVs hurt her arms, and the hospice people tell me a feeding tube and / or catheter can become infected quickly and cause Mama more pain.
So, I get up each morning now and we roll Mama over, change her if she's wet, change her bedsore bandage, pull her up in the bed, get her drink of water and try to give her a few bites of pudding or jello, and then I give her liquid morphine for the pain and she goes back to sleep. Then we go through the whole process again at noon, and again in the evening. I can tell she is frustrated because she cannot communicate. Dad spends a lot of time standing in the doorway, watching, but not participating. He leaves all the care to me. I don't think he can handle it even a little bit.
At night, I have a baby monitor hooked up so I can hear her. We've had the monitor ever since she came home from the hospital for the headache. It's a very expensive monitor and I can even hear her breathing. That's what I focus on at night - her breathing. It has become deeper and a little raspy. I sleep so lightly at night, listening for her to moan or call out. She doesn't call out anymore at all, but she does moan sometimes like she's in pain. When that happens, I go in and call her name. If she responds, I give her more pain medication. If she doesn't respond, I just let her continue to sleep. I get up about ten times a night to check on her.
This last downhill slide came on so quickly that it totally surprised me. One day she was sitting in her chair talking to me and I was taking her to the bathroom and bathing her, and the next day she was completely bed ridden and unable to communicate anymore. So quick, such a shock. I cannot believe we took her out for a short trip for pizza just three weeks ago, on a day she was doing a bit better. It seemed like she would rally and be okay for a while. The last bit of time sure fools you. Now, I'm glad I had my brothers visit before it was to this point.
Mama is barely able to talk now. I know she wants to tell me things, talk about her comfort or discomfort, ask for water, etc., but she is unable to do so. The only time she says anything very clearly is when she cries out when we move her. Any movement at all seems so painful for her. She shakes her a head a little bit for yes or no, but then she barely moves it and sometimes you cannot even understand that. I give her drinks of water off and on all day and try to feed her a little pudding. I don't want to think she might be suffering at all from thirst or hunger, even though the hospice people tell me she is not. But she is at the point where even a couple bites of pudding is hard because she does not swallow well. And she is barely able to suck fluid through a straw. She only takes a little sip after quite a struggle and then stops. We could put her IVs and a feeding tube, but Mama asked me not to do that before she became less coherent. Mama said the IVs hurt her arms, and the hospice people tell me a feeding tube and / or catheter can become infected quickly and cause Mama more pain.
So, I get up each morning now and we roll Mama over, change her if she's wet, change her bedsore bandage, pull her up in the bed, get her drink of water and try to give her a few bites of pudding or jello, and then I give her liquid morphine for the pain and she goes back to sleep. Then we go through the whole process again at noon, and again in the evening. I can tell she is frustrated because she cannot communicate. Dad spends a lot of time standing in the doorway, watching, but not participating. He leaves all the care to me. I don't think he can handle it even a little bit.
At night, I have a baby monitor hooked up so I can hear her. We've had the monitor ever since she came home from the hospital for the headache. It's a very expensive monitor and I can even hear her breathing. That's what I focus on at night - her breathing. It has become deeper and a little raspy. I sleep so lightly at night, listening for her to moan or call out. She doesn't call out anymore at all, but she does moan sometimes like she's in pain. When that happens, I go in and call her name. If she responds, I give her more pain medication. If she doesn't respond, I just let her continue to sleep. I get up about ten times a night to check on her.
This last downhill slide came on so quickly that it totally surprised me. One day she was sitting in her chair talking to me and I was taking her to the bathroom and bathing her, and the next day she was completely bed ridden and unable to communicate anymore. So quick, such a shock. I cannot believe we took her out for a short trip for pizza just three weeks ago, on a day she was doing a bit better. It seemed like she would rally and be okay for a while. The last bit of time sure fools you. Now, I'm glad I had my brothers visit before it was to this point.
This post first appeared on Mama Died, Dad's Dementia + A Grandchild, please read the originial post: here
