Driving down Route 93 into Somerville to do my first death pronouncement on a patient who was mine and who I was fond of, and fond of the family, and personally sad about, but glad for their release from sickness and decline...
...early in the day, and the commuter traffic heavy, so I put in a CD a friend had burned for me and that I had not yet taken the time to listen to...
...music in my car always helps.
(This is, of course, the first song, called "Sleeping Lessons", on that CD my friend burned, The Shins album Wincing the Night Away. A little bit of a crazy synchronicity, that...)
This isn't me. It's Night Windows by Edward Hopper.
Showing posts with label hospice. Show all posts
Showing posts with label hospice. Show all posts
Monday, July 4, 2011
Saturday, July 2, 2011
An Update
http://curlytop-upstairs.blogspot.com/2011/04/when-will-you-be-back.html
She died April 28, 2011 in her home, surrounded by her family.
He died June 27, 2011, in a nursing home, at 3:30am, having been visited the night before by a niece who drove non-stop from the Midwest to see him.
They both died peacefully.
She died April 28, 2011 in her home, surrounded by her family.
He died June 27, 2011, in a nursing home, at 3:30am, having been visited the night before by a niece who drove non-stop from the Midwest to see him.
They both died peacefully.
Thursday, April 14, 2011
"When Will You Be Back?"
I was down on the floor, entertaining a two-year-old, while her mother helped my patient onto the commode beside us. My patient was the grandmother. We were in one of the bedrooms, the one with the most comfortable bed and the TV. My patient cried and wailed with each shuffling step, but her daughter was unfazed, so I decided to let them do what they were doing--this was their life, not mine, I was a visitor here--and keep my focus on the child. She was playing with a toy truck, and had it drive up and down her mother's leg until her mother batted it away with her hand. I thought of blowing up a glove balloon, but decided that she was too young and might chew it.
The misery in the room was a very basic kind of misery, the kind caused by physical suffering. I felt how huge it was, and how the child with the truck and her matter-of-fact mother took some of the heft out of it. It can be easy to relieve suffering. The first and hardest part is not shutting down in the face of it.
My patient hadn't slept in two days from the pain. Nobody had called me, because they didn't think of it--I was coming Tuesday, right? They would see me Tuesday. I tell patients and families all the time, "You call any time day or night, we can help you," but so many people are so used to getting by on their own that they don't understand what that means. I walked through the door, and saw a woman with a gaunt, shadowed face, her eyes gleaming with pain, and crying. I felt the horror of it (and hers was an especially terrible cancer, with tumors actually starting to push up from under her skin on her torso, and leg, and back; her insides were so full of tumors, there was no more room for them to grow), and felt the battleax nurse in me get annoyed, too-- "This was avoidable, people! What were you all thinking??"--and also felt how great the need was for somebody to steer this ship away from the shoals. Well, I could do that, and I did.
The thing is, I get to leave. I write out instructions, we discuss the plan, I reassure, I stress the importance of calling if there is a problem, but then I get to pick up my nursing bag and walk out the door. I have to make sure that I have left them with more than bottles of pills and written schedules; I have to be sure that I have given them some nameless something that can help them get through the hours before the next nursing visit. I don't choose to identify what that something is. With each person, it's a little different.
I offered the services of the social worker, and the chaplain, and the home health aide, and tried my best to get them to accept one other discipline in their home other than the nurse (because I know how much it helps--they didn't, couldn't), but they turned all of it down. "All we need is you," they told me,"we trust you."
I have another cancer patient two towns over. He once weighed 300 pounds, mostly muscle, 6 feet tall, and photos of him from years ago startle me, because it could not possibly be the same man, save the sparkle in his eyes. He's now about 145. He used to train horses; he's from horse country, out around Kentucky, and never married. "I couldn't, living that kind of life, I travelled all the time and worked from 5am to midnight. Not that I didn't have lady friends through the years!"
I pulled up a chair, and we talked. I've been seeing him for three months now; he hates the pain, so whenever it starts getting ahead of the medication, he tells me, and we adjust it. He was amazed that the pain meds we used on him worked so well--he'd been taking MS Contin from the oncologist and it hadn't done much. A lot of our talks initially were about how wonderous life had become without being plagued with pain all the time. A full night's sleep was next to heaven. He was able to go for walks again, and was happy to be able to get the the grocery store and get his shopping done without having to have anybody help him.
As time went on, he started telling me stories of his boyhood in the Kentucky hills in the forties. "Do you wish you could go back there? Would you if you could?" I asked, and he answered with a slow smile, "Naw, I'm done with that place. I'm content here."
He told me about his travels, and life on the road, and being poor. One day he was wearing a T-shirt with a decal of wolves on it, and he said, "Somebody saw this today and thought that I was an animal lover!" I laughed and said, "C'mon, I bet you're wearing that because it was fifty cents at the flea market and it fit you." "You are absolutely right!" he grinned.
He's a charming but solitary man. He has pictures of the Virgin Mary on his walls, "just in case," he says, but I don't believe him. He's an atheist, and was never a Catholic. I'll bet there is some other reason that he just hasn't told me yet.
He started to fall off about a month ago, and gave me a worry--sleeping all the time, no more walks, the pain in a new place--but then righted himself and had a few weeks of feeling better. Than this week I went to see him and his face, always pale, was gray around his eyes and cheekbones, and his eyes were dull and troubled. "What's wrong?" I asked, and we talked about it. It wasn't so much the pain and the breathing problems as the weakness and the futility of it all. "I know I won't get any better, but I want to. I don't like this."
"I wish I had a magic nursing wand," I told him,"and could take it all away from you."
"So do I."
"Yeah. But I can't. All I can do is see you on Wednesday. And Friday, too. I'll keep a close eye on you. How's that?"
"Yeah, I think I need it."
I stood up to get my stethescope from my nursing bag, and he said suddenly, "You are beautiful."
I didn't know how to respond at first. "Well, I'm having a really good hair day," I answered, and he gave me a grin. The gentle sparkle in his eyes was back, if only for the moment.
He is a man who takes it as it comes, and rolls with it, and looks for the humor in everything. He also takes life very seriously. He's like me in that way.
And I'm his nurse. I'll be back at the end of the week.
The misery in the room was a very basic kind of misery, the kind caused by physical suffering. I felt how huge it was, and how the child with the truck and her matter-of-fact mother took some of the heft out of it. It can be easy to relieve suffering. The first and hardest part is not shutting down in the face of it.
My patient hadn't slept in two days from the pain. Nobody had called me, because they didn't think of it--I was coming Tuesday, right? They would see me Tuesday. I tell patients and families all the time, "You call any time day or night, we can help you," but so many people are so used to getting by on their own that they don't understand what that means. I walked through the door, and saw a woman with a gaunt, shadowed face, her eyes gleaming with pain, and crying. I felt the horror of it (and hers was an especially terrible cancer, with tumors actually starting to push up from under her skin on her torso, and leg, and back; her insides were so full of tumors, there was no more room for them to grow), and felt the battleax nurse in me get annoyed, too-- "This was avoidable, people! What were you all thinking??"--and also felt how great the need was for somebody to steer this ship away from the shoals. Well, I could do that, and I did.
The thing is, I get to leave. I write out instructions, we discuss the plan, I reassure, I stress the importance of calling if there is a problem, but then I get to pick up my nursing bag and walk out the door. I have to make sure that I have left them with more than bottles of pills and written schedules; I have to be sure that I have given them some nameless something that can help them get through the hours before the next nursing visit. I don't choose to identify what that something is. With each person, it's a little different.
I offered the services of the social worker, and the chaplain, and the home health aide, and tried my best to get them to accept one other discipline in their home other than the nurse (because I know how much it helps--they didn't, couldn't), but they turned all of it down. "All we need is you," they told me,"we trust you."
I have another cancer patient two towns over. He once weighed 300 pounds, mostly muscle, 6 feet tall, and photos of him from years ago startle me, because it could not possibly be the same man, save the sparkle in his eyes. He's now about 145. He used to train horses; he's from horse country, out around Kentucky, and never married. "I couldn't, living that kind of life, I travelled all the time and worked from 5am to midnight. Not that I didn't have lady friends through the years!"
I pulled up a chair, and we talked. I've been seeing him for three months now; he hates the pain, so whenever it starts getting ahead of the medication, he tells me, and we adjust it. He was amazed that the pain meds we used on him worked so well--he'd been taking MS Contin from the oncologist and it hadn't done much. A lot of our talks initially were about how wonderous life had become without being plagued with pain all the time. A full night's sleep was next to heaven. He was able to go for walks again, and was happy to be able to get the the grocery store and get his shopping done without having to have anybody help him.
As time went on, he started telling me stories of his boyhood in the Kentucky hills in the forties. "Do you wish you could go back there? Would you if you could?" I asked, and he answered with a slow smile, "Naw, I'm done with that place. I'm content here."
He told me about his travels, and life on the road, and being poor. One day he was wearing a T-shirt with a decal of wolves on it, and he said, "Somebody saw this today and thought that I was an animal lover!" I laughed and said, "C'mon, I bet you're wearing that because it was fifty cents at the flea market and it fit you." "You are absolutely right!" he grinned.
He's a charming but solitary man. He has pictures of the Virgin Mary on his walls, "just in case," he says, but I don't believe him. He's an atheist, and was never a Catholic. I'll bet there is some other reason that he just hasn't told me yet.
He started to fall off about a month ago, and gave me a worry--sleeping all the time, no more walks, the pain in a new place--but then righted himself and had a few weeks of feeling better. Than this week I went to see him and his face, always pale, was gray around his eyes and cheekbones, and his eyes were dull and troubled. "What's wrong?" I asked, and we talked about it. It wasn't so much the pain and the breathing problems as the weakness and the futility of it all. "I know I won't get any better, but I want to. I don't like this."
"I wish I had a magic nursing wand," I told him,"and could take it all away from you."
"So do I."
"Yeah. But I can't. All I can do is see you on Wednesday. And Friday, too. I'll keep a close eye on you. How's that?"
"Yeah, I think I need it."
I stood up to get my stethescope from my nursing bag, and he said suddenly, "You are beautiful."
I didn't know how to respond at first. "Well, I'm having a really good hair day," I answered, and he gave me a grin. The gentle sparkle in his eyes was back, if only for the moment.
He is a man who takes it as it comes, and rolls with it, and looks for the humor in everything. He also takes life very seriously. He's like me in that way.
And I'm his nurse. I'll be back at the end of the week.
Monday, March 21, 2011
A Strange Little Hospice Story
I'm a hospice nurse. I see nursing home patients and hospital patients sometimes, but mostly I do home care. The nursing I do feels like old-fashioned nursing, when nurses wore black capes and carried their nursing bags around the worst neighborhoods in the city, and everybody respected them, because they would walk into the most fraught and chaotic situations and make things better.
I take care of people who are dying at various speeds and intensities. A good day for my patients is a fabulous and wonderful thing, and on the good days I give them the thumb's-up and stay out of the way. On the bad days, I'm liable to do many different things--give or set up medications, change bedding, give a bedbath or a shower, make tea, move furniture (don't tell the boss, we're not supposed to), help to the bathroom and back again, give hugs, hold hands, adjust the TV, amuse the dog or cat, change lightbulbs, make a phone call, or just talk. I talk a lot. I teach, patients and families, about medications, about caregiving, about symptoms, about what we call "the decline", and about death. I do nursey stuff too--blood pressures and wound care and all of that--and engage in the social chitchat all of us need to feel comfortable and comforted.
I listen. I hear a lot of stories--amazing stories--but I am not, by nature, a story collector, or much of a story listener. Even as a kid, I got bored being read to and learned how to read early so I could tell the stories to myself. I work with chaplains and social workers, and they see my patients too--usually not as often as I do, but often--and they collect the stories far better than I can.
My patients sometimes tell me things they can't tell anyone else. I've been the one they have said "I know I'm dying," to and cried, while I sit there and listen. I find myself witnessing a lot of pain, and a lot of letting go, and it keeps me clear in my own life about what is important and what is nonsense, but not for a minute do I go into my work to meet some need of my own. Many of my patients never get close to me at all; sometimes I get closer to a family member than the patient, and sometimes I'm just the nurse, and that's okay. I'm there for them, not for me, and I'm not trying to be anything more than what they want or need me to be.
Sometimes I find myself trying harder than usual, though. Jean from the islands was in his nineties but didn't look it, and he had a smile that was the best I've ever seen. When I would visit him and he was angry about being sick, or simply feeling like shit, and I couldn't get a smile, I'd joke and tease and cajole until I got one. The few times I couldn't I would leave his house feeling a little like shit, too, which wasn't fair to Jean at all but I couldn't seem to help it.
When I started being his nurse we would sit together in his yard out in the sun and talk. His accent was thick and difficult to navigate, but he didn't mind repeating, and when I would say, "Jean, I have no idea what you just said," he would smile and shake his head and repeat it. He worked manual labor his whole life, and his arms were still etched with muscle, although thinner by the week. He had rode his bike everywhere until he got too sick, about six months before I met him. He had a deep belief in God. His issue with the business of dying had much less to do with leaving this world than with his body skipping out on him. By Christmastime he had been bedbound for weeks, and the boredom of being weak and exhausted would make him irritable. Often I would visit and he would be sleeping, so I would not wake him--I would quietly assess his breathing, his color, the appearance of comfort versus discomfort, and talk to his granddaughter about what had been going on and what they might need.
A week before he died he was the brightest I had seen him since the days we sat in the sunshine--he told stories, he laughed, he knew where he was. I sat beside his bed for much longer than I usually gave a visit, because I suspected this was the last time, and I was right. The next day he went to sleep, and he didn't really wake up after that. He died right before midnight on New Year's Eve, in a characteristic decision to live the year out to it's fullest.
I don't go to funerals much, but I went to Jean's. I didn't get to the wake, so before the service, I paid my respects while the casket was still open. He was dressed in a dapper gray suit, looking not at all like himself, but then I noticed--to my great joy--that he was smiling. I had never in my life seen a body smiling serenely in a casket, but he was--the corners of his mouth were distinctly upturned.
A few days later I was in the office, and saw the chaplain I work with, and I mentioned going to Jean's funeral. She had been to the wake. "It's amazing," I said, "but did you notice how he was smiling? I've never seen a person smiling in a casket before."
She gave me a very odd look. "He wasn't smiling," she said.
"What? Yes, he was. It was so clear. His mouth was turned up. You couldn't miss it!"
She shook her head. "No, kiddo, he was not smiling. You saw him smile?"
Now I was doubting myself, but in my mind's eye, I could see him. I could feel him, too--I had felt the happy, boyish, joyful energy of his smile all around his casket as I stood there looking and saying my own version of a prayer for him. "Yeah, I saw him smile. He was smiling."
"That must have been for you, kiddo," she said.
You know? I think it was.
I take care of people who are dying at various speeds and intensities. A good day for my patients is a fabulous and wonderful thing, and on the good days I give them the thumb's-up and stay out of the way. On the bad days, I'm liable to do many different things--give or set up medications, change bedding, give a bedbath or a shower, make tea, move furniture (don't tell the boss, we're not supposed to), help to the bathroom and back again, give hugs, hold hands, adjust the TV, amuse the dog or cat, change lightbulbs, make a phone call, or just talk. I talk a lot. I teach, patients and families, about medications, about caregiving, about symptoms, about what we call "the decline", and about death. I do nursey stuff too--blood pressures and wound care and all of that--and engage in the social chitchat all of us need to feel comfortable and comforted.
I listen. I hear a lot of stories--amazing stories--but I am not, by nature, a story collector, or much of a story listener. Even as a kid, I got bored being read to and learned how to read early so I could tell the stories to myself. I work with chaplains and social workers, and they see my patients too--usually not as often as I do, but often--and they collect the stories far better than I can.
My patients sometimes tell me things they can't tell anyone else. I've been the one they have said "I know I'm dying," to and cried, while I sit there and listen. I find myself witnessing a lot of pain, and a lot of letting go, and it keeps me clear in my own life about what is important and what is nonsense, but not for a minute do I go into my work to meet some need of my own. Many of my patients never get close to me at all; sometimes I get closer to a family member than the patient, and sometimes I'm just the nurse, and that's okay. I'm there for them, not for me, and I'm not trying to be anything more than what they want or need me to be.
Sometimes I find myself trying harder than usual, though. Jean from the islands was in his nineties but didn't look it, and he had a smile that was the best I've ever seen. When I would visit him and he was angry about being sick, or simply feeling like shit, and I couldn't get a smile, I'd joke and tease and cajole until I got one. The few times I couldn't I would leave his house feeling a little like shit, too, which wasn't fair to Jean at all but I couldn't seem to help it.
When I started being his nurse we would sit together in his yard out in the sun and talk. His accent was thick and difficult to navigate, but he didn't mind repeating, and when I would say, "Jean, I have no idea what you just said," he would smile and shake his head and repeat it. He worked manual labor his whole life, and his arms were still etched with muscle, although thinner by the week. He had rode his bike everywhere until he got too sick, about six months before I met him. He had a deep belief in God. His issue with the business of dying had much less to do with leaving this world than with his body skipping out on him. By Christmastime he had been bedbound for weeks, and the boredom of being weak and exhausted would make him irritable. Often I would visit and he would be sleeping, so I would not wake him--I would quietly assess his breathing, his color, the appearance of comfort versus discomfort, and talk to his granddaughter about what had been going on and what they might need.
A week before he died he was the brightest I had seen him since the days we sat in the sunshine--he told stories, he laughed, he knew where he was. I sat beside his bed for much longer than I usually gave a visit, because I suspected this was the last time, and I was right. The next day he went to sleep, and he didn't really wake up after that. He died right before midnight on New Year's Eve, in a characteristic decision to live the year out to it's fullest.
I don't go to funerals much, but I went to Jean's. I didn't get to the wake, so before the service, I paid my respects while the casket was still open. He was dressed in a dapper gray suit, looking not at all like himself, but then I noticed--to my great joy--that he was smiling. I had never in my life seen a body smiling serenely in a casket, but he was--the corners of his mouth were distinctly upturned.
A few days later I was in the office, and saw the chaplain I work with, and I mentioned going to Jean's funeral. She had been to the wake. "It's amazing," I said, "but did you notice how he was smiling? I've never seen a person smiling in a casket before."
She gave me a very odd look. "He wasn't smiling," she said.
"What? Yes, he was. It was so clear. His mouth was turned up. You couldn't miss it!"
She shook her head. "No, kiddo, he was not smiling. You saw him smile?"
Now I was doubting myself, but in my mind's eye, I could see him. I could feel him, too--I had felt the happy, boyish, joyful energy of his smile all around his casket as I stood there looking and saying my own version of a prayer for him. "Yeah, I saw him smile. He was smiling."
"That must have been for you, kiddo," she said.
You know? I think it was.
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