My mother always liked to say that she didn't want to be a bother. Today, we were to meet with hospice staff, make arrangements for the delivery of a hospital bed, move the furniture in her living room to make space for it, all of that. But my mother doesn't like being a bother.
She died this morning at 7AM.
Showing posts with label Hospice. Show all posts
Showing posts with label Hospice. Show all posts
Monday, October 19, 2009
Sunday, October 18, 2009
Status
My mother didn't die tonight. I really thought she would.
We were both there, and she was using phrases like 'Good bye' and 'I think I'm dying' and 'I'm ready'. As we left the floor to let them change dressings and the like, her day nurse told us that her blood pressure was down about 30 points (systolic), her heart rate had dropped a bit, and the color of her skin around her feet was changing, getting paler. She looked as if she were going to die, sometime soon. Cadaverous.
When we came back, half-sure we'd be intercepted on the way to her room, she was awake (kind of), looking around at us. She wasn't ever alert, and some of what she said didn't make much sense, but she was clearly still alive.
After a bit, the nurse gave her some Ativan, and she dropped off to sleep within thirty seconds. Like a rock. I watched her heart rate and O2 saturation for a while, and they were fine, so we left.
We think it's going to happen this week, but we'll take what we can get.
We were both there, and she was using phrases like 'Good bye' and 'I think I'm dying' and 'I'm ready'. As we left the floor to let them change dressings and the like, her day nurse told us that her blood pressure was down about 30 points (systolic), her heart rate had dropped a bit, and the color of her skin around her feet was changing, getting paler. She looked as if she were going to die, sometime soon. Cadaverous.
When we came back, half-sure we'd be intercepted on the way to her room, she was awake (kind of), looking around at us. She wasn't ever alert, and some of what she said didn't make much sense, but she was clearly still alive.
After a bit, the nurse gave her some Ativan, and she dropped off to sleep within thirty seconds. Like a rock. I watched her heart rate and O2 saturation for a while, and they were fine, so we left.
We think it's going to happen this week, but we'll take what we can get.
MoreNews
Just about the time that we think we've absorbed the news, more arrives. This morning, they informed us that my mother was having difficulty swallowing, and they wanted to know if they should insert a feeding tube should that seem permanent. My gut feeling was no, don't, but of course I almost immediately thought If you don't feed her, she'll die, and not in weeks-to-months, but this week. I'm aware that use of a feeding tube isn't consistant with the idea of palliative care, but, holy hell, we'd like to at least get her home.
Gah.
Gah.
Writing
I almost wrote an email to one of the hospital staff, saying that I knew that the palliative care doc, and a hospitalist, both said that my mother is unlikely to live a long time, but could they find someone who thinks otherwise to give me the contrary view regarding treatment? If I could find someone who didn't think that hospice was a good idea, I'd listen. Then I wrote 'Of course I know there aren't any guarantees', and I stopped and looked at what I'd written. Guarantees are pretty much exactly what I want.
Saturday, October 17, 2009
Observation
This morning, I spent about three hours in the hospital room with my mother. For most of it, she was on a forced-air breathing mask, which she seriously did not like, and which made it almost impossible to understand her. After about two hours, she finally fell asleep (she'd not slept most of the previous night). Fifteen minutes later, the food crew showed up. ARE YOU HUNGRY???
-------
We were collapsing the desk that my mother used where she would do crosswords on the PC. Making room for the hospital bed. I really, really didn't like doing that - so much so that sitting down afterwards, looking at the space where it had been, I started to cry. I couldn't stand to think of the change -- a month ago, my mother could sit there to do crossword puzzles -- we were so pleased, thinking this was helping her intellectual abilities keep from decaying. She could walk around, even if she did use a walker and get out of breath quickly. She could choose which room to be in, and do things there. This time, when she comes, she'll be confined to a hospital bed in one room. She'll see things she likes, but perhaps they'll just remind her of her lost abilities. It reminds me of visiting my friend who died of cancer a few years ago. She wasn't eating, and we asked an oncologist about it. He said, simply, that this was how cancer patients died. It wasn't easy for me to be that pragmatic with my friend, and it's even less so with my mother.
My wife said that it was like grieving twice -- first for the loss of my mother's mobility, and sometime in the future, for the loss of her life. I think she's right.
-------
We were collapsing the desk that my mother used where she would do crosswords on the PC. Making room for the hospital bed. I really, really didn't like doing that - so much so that sitting down afterwards, looking at the space where it had been, I started to cry. I couldn't stand to think of the change -- a month ago, my mother could sit there to do crossword puzzles -- we were so pleased, thinking this was helping her intellectual abilities keep from decaying. She could walk around, even if she did use a walker and get out of breath quickly. She could choose which room to be in, and do things there. This time, when she comes, she'll be confined to a hospital bed in one room. She'll see things she likes, but perhaps they'll just remind her of her lost abilities. It reminds me of visiting my friend who died of cancer a few years ago. She wasn't eating, and we asked an oncologist about it. He said, simply, that this was how cancer patients died. It wasn't easy for me to be that pragmatic with my friend, and it's even less so with my mother.
My wife said that it was like grieving twice -- first for the loss of my mother's mobility, and sometime in the future, for the loss of her life. I think she's right.
Friday, October 16, 2009
Practicalities
This evening, we spoke for a while with my cousin who's a hospice nurse. She reiterated what we'd heard locally. Somehow, hearing it from someone we knew made it a bit more bearable and acceptable. I thought Others have done this. We can do it, too.
Some practicalities occur to us. For one, we need to come up with a way for my mother to signal us at night and on the weekend. Even if we're just down the hall, we might as well be a thousand miles away. Some kind of electronic device occurs to me -- a bike horn, or a wireless doorbell, something like that. It has to be something that's very, very easy to use, because she's pretty weak. We're also thinking about putting in a wireless baby monitor.
It occurs to me that for the first few nights, and possibly on an intermittant basis, we might want to have one of us sleep in my mother's bedroom, which is just across the hall from her living room, where the hospital bed will be. (Never thought of the 'living room' as 'the only room in which one is living'. )
One thing that my cousin suggested is that we routinely talk with others in this situation, or possibly write in a journal. I think that's a good idea.
Some practicalities occur to us. For one, we need to come up with a way for my mother to signal us at night and on the weekend. Even if we're just down the hall, we might as well be a thousand miles away. Some kind of electronic device occurs to me -- a bike horn, or a wireless doorbell, something like that. It has to be something that's very, very easy to use, because she's pretty weak. We're also thinking about putting in a wireless baby monitor.
It occurs to me that for the first few nights, and possibly on an intermittant basis, we might want to have one of us sleep in my mother's bedroom, which is just across the hall from her living room, where the hospital bed will be. (Never thought of the 'living room' as 'the only room in which one is living'. )
One thing that my cousin suggested is that we routinely talk with others in this situation, or possibly write in a journal. I think that's a good idea.
Thoughts
I go hot and cold on this home hospice idea.
I think it's a good idea for somebody else's mother, someone who's old and frail and, you know, sick -- trouble breathing, problems with their heart, taking lots of meds. Then I think about how much of that description describes my mother, and I think yeah, well.... Because the truth is, I don't want to do it. Doing it acknowledges that she's going to die, most likely within the next year, and probably near-term at that. I don't want to admit that. Admitting it somehow feels like making it happen, and I don't want it to happen. I know, that's illogical. It's just how I feel. I think yeah, well, dialysis could keep her alive longer....but I know that that's not really true. If her kidneys were her only problem, if she were younger, then possibly yes, it would - but that's not the case. For an elderly person with multiple problems that aren't fixable, and will only get worse, then hospice makes sense. Hospice is for incurable diseases, illnesses that limit and end life, and thats what she's got, right?
Only....does she? Does she really? Do I know that?
Sometimes, I think yes. And sometimes, I don't.
I think it's a good idea for somebody else's mother, someone who's old and frail and, you know, sick -- trouble breathing, problems with their heart, taking lots of meds. Then I think about how much of that description describes my mother, and I think yeah, well.... Because the truth is, I don't want to do it. Doing it acknowledges that she's going to die, most likely within the next year, and probably near-term at that. I don't want to admit that. Admitting it somehow feels like making it happen, and I don't want it to happen. I know, that's illogical. It's just how I feel. I think yeah, well, dialysis could keep her alive longer....but I know that that's not really true. If her kidneys were her only problem, if she were younger, then possibly yes, it would - but that's not the case. For an elderly person with multiple problems that aren't fixable, and will only get worse, then hospice makes sense. Hospice is for incurable diseases, illnesses that limit and end life, and thats what she's got, right?
Only....does she? Does she really? Do I know that?
Sometimes, I think yes. And sometimes, I don't.
Progress
Well, things are progressing. We spoke again with the Palliative Care people, and with the Hospice people. We're comfortable with the general idea -- that my mother can come home, and be with us and with the things she knows. We're setting up a home health aide to start coming to the house all day, five days a week, for as long as it takes.
I say comfortable; that's not entirely true. But we're getting used to it.
I say comfortable; that's not entirely true. But we're getting used to it.
Thoughts
The weather is grey, gloomy, and rainy. Perfect for the thoughts we're having.
In a manifestation of nature's ability for irony, my mother in law, who had stayed overnight with us and visited my mother yesterday, learned this morning that her sister-in-law, who was in a hospice, died this morning.
We are working through our emotions about this. We have to keep pushing away the idea that all we want is for things to be as they were. Last night, I talked at length with my daughter, and she said exactly that. I did not make any trite observations -- at least, I hope I did not.
We learned this morning that it's possible to extend my mother's life by having her go to a facility where she would live -- they call it an extended care facility -- that could handle bringing her to and from dialysis treatments. At the conclusion of that, when it was felt to be no longer effective, she could still come home to us (assuming, of course, that she did not die in the interim). We like that because it keeps her alive longer, but we don't like it because it's not what she wants. When the palliative care doctor asked what she wanted, she said 'to get well', and 'to go home'. The doctor told her that it was not likely she could get much better, but that we could think about the second -- which is what we're doing.
We simultaneously want my mother to be with us for a good long time, and want this to be over quickly. More precisely, we want the cost and inconvenience to be over quickly. Feeling that way makes us feel quite shabby. Its true, we don't want her to suffer, either, but somehow choosing the shorter life/less suffering option seems ignoble to us. As I say, shabby.
I had said she has in the days to weeks range; that's incorrect. Weeks-to-months.
In a manifestation of nature's ability for irony, my mother in law, who had stayed overnight with us and visited my mother yesterday, learned this morning that her sister-in-law, who was in a hospice, died this morning.
We are working through our emotions about this. We have to keep pushing away the idea that all we want is for things to be as they were. Last night, I talked at length with my daughter, and she said exactly that. I did not make any trite observations -- at least, I hope I did not.
We learned this morning that it's possible to extend my mother's life by having her go to a facility where she would live -- they call it an extended care facility -- that could handle bringing her to and from dialysis treatments. At the conclusion of that, when it was felt to be no longer effective, she could still come home to us (assuming, of course, that she did not die in the interim). We like that because it keeps her alive longer, but we don't like it because it's not what she wants. When the palliative care doctor asked what she wanted, she said 'to get well', and 'to go home'. The doctor told her that it was not likely she could get much better, but that we could think about the second -- which is what we're doing.
We simultaneously want my mother to be with us for a good long time, and want this to be over quickly. More precisely, we want the cost and inconvenience to be over quickly. Feeling that way makes us feel quite shabby. Its true, we don't want her to suffer, either, but somehow choosing the shorter life/less suffering option seems ignoble to us. As I say, shabby.
I had said she has in the days to weeks range; that's incorrect. Weeks-to-months.
Thursday, October 15, 2009
Status
We are going to look into having an at-home hospice arrangement. Not sure its possible, but we're going to try. It'd mean having my mother at home, which is very important to her, and comfortable, which is very important to me. It will also mean being here when she dies, which makes me sick to my stomach. I really, really hate that thought.
They estimate she has in the days-to-weeks range.
They estimate she has in the days-to-weeks range.
Subscribe to:
Posts (Atom)