One of my patients died last week. On the face of it, there's nothing novel about that sentence. I could probably begin a posting every week with those words.
Some losses, though, are harder than others. When you share someone's life for six months, learning her history, listening to her stories, reluctantly leaving her to visit another patient; when the music she loved plays unexpectedly on your ipod and you remember her tears as she sang along, it's hard to let go.
It's also hard remembering the most recent visits. She asked, "Am I going to die?" I answered and we both had tears in our eyes. "I never thought I'd die," she said.
I've thought about that visit a lot lately. Obviously, a patient on hospice knows her prognosis, as do her nurses, her aides, her social workers and chaplains.
Any one of us can, on any day, acknowledge that one day we too will die. But her words ring so true. I know that one day I will die, but I imagine it far off in the future. And when that day comes, it will probably seem too soon to me, no matter how old I am. And I expect that, if you ask me, I too would say, as she did, "I never thought I'd die."
May her memory be a blessing.
Wednesday, January 12, 2011
Sunday, December 5, 2010
Al hanisim
I was working this morning, driving to an on-call visit and listening to the radio. The radio program came to an end and the station began to broadcast a Sunday church service. This is usually my cue to change the station, but today I thought I'd listen. The service being broadcast was from a Unitarian Universalist church. I'm not sure why I decided to listen - perhaps because I recently lost a patient who identified as UU. I thought of him this morning when the service came on and I didn't change the channel.
At the beginning of the service, the service leader mentioned that it was Chanukah on the Jewish calendar. One of the song selections was "Light One Candle" and the congregation's educator would speak about Chanukah. That got my attention - what would she say?
She spoke about Chanukah as a holiday of light. She went on to equate the Chanukah lights to the use of light in many other religious traditions. I understood her connections - the UU religion is marked by theological diversity. I don't know who was sitting in the congregation (or listening on the radio) or their specific faith backgrounds, but listening to her talk they could link their beliefs to the message she was giving.
My problem came a little earlier in her talk. She spoke of the day's worth of oil that lasted eight days as she explained the holiday. She then went on to say, "but the oil is unimportant." Unimportant?!?! If you're focusing on light, how can that which caused the light be unimportant to the story?
Really, however, I had a bigger problem with her talk. Lights are important to Chanukah; one of the holiday's names is "Festival of Lights" ("chag urim" in Hebrew.) Lights are lovely. Lighting up the darkness on these cold winter nights is a wonderful thing. And the Chanukah lights glow even more brightly because they are lit in the days of a waning moon into the new moon. But for me Chanukah is not about lights - it's about miracles.
The prayers when we say the daily Amidah and later when we light the Chanukah menorah focus on the nisim, the miracles that God performed for our ancestors at this season. Last week, as I was preparing the reflection for our hospice Interdisciplinary Team Meeting, I was thinking about Chanukah. And I was thinking about miracles.
I believe that our lives are filled with miracles. There are the "everyday miracles" (as the Reform siddur labels the daily blessings) - the miracles of breath, of sight, of awareness, of freedom, of being created in the ways we are created. There are the miracles of love, and connection, and relationship.
There are the miracles I see in hospice work. I've viewed times when families find healing in the face of death. I've seen someone arrive at "just the right time" or somehow say exactly the right words. I've walked onto a nursing home unit and been greeted with "Thank God you are here." (And often when my presence was not on my planned weekly schedule. What was it that brought me to this place at this precise time?)
When it comes to miracles, I know we can't stop the angel of death from coming; all of us will meet him one day. But we can push back, and there are times when we can delay his arrival.
Part of my job is to be present, to watch for the miracles, and to name them. Chanukah reminds me that miracles do exist. They existed for our ancestors at this season, and they exist for us in these days.
Chag urim sama'ach! May our days be filled with light and may we be open to and aware of the miracles that daily fill our lives.
At the beginning of the service, the service leader mentioned that it was Chanukah on the Jewish calendar. One of the song selections was "Light One Candle" and the congregation's educator would speak about Chanukah. That got my attention - what would she say?
She spoke about Chanukah as a holiday of light. She went on to equate the Chanukah lights to the use of light in many other religious traditions. I understood her connections - the UU religion is marked by theological diversity. I don't know who was sitting in the congregation (or listening on the radio) or their specific faith backgrounds, but listening to her talk they could link their beliefs to the message she was giving.
My problem came a little earlier in her talk. She spoke of the day's worth of oil that lasted eight days as she explained the holiday. She then went on to say, "but the oil is unimportant." Unimportant?!?! If you're focusing on light, how can that which caused the light be unimportant to the story?
Really, however, I had a bigger problem with her talk. Lights are important to Chanukah; one of the holiday's names is "Festival of Lights" ("chag urim" in Hebrew.) Lights are lovely. Lighting up the darkness on these cold winter nights is a wonderful thing. And the Chanukah lights glow even more brightly because they are lit in the days of a waning moon into the new moon. But for me Chanukah is not about lights - it's about miracles.
The prayers when we say the daily Amidah and later when we light the Chanukah menorah focus on the nisim, the miracles that God performed for our ancestors at this season. Last week, as I was preparing the reflection for our hospice Interdisciplinary Team Meeting, I was thinking about Chanukah. And I was thinking about miracles.
I believe that our lives are filled with miracles. There are the "everyday miracles" (as the Reform siddur labels the daily blessings) - the miracles of breath, of sight, of awareness, of freedom, of being created in the ways we are created. There are the miracles of love, and connection, and relationship.
There are the miracles I see in hospice work. I've viewed times when families find healing in the face of death. I've seen someone arrive at "just the right time" or somehow say exactly the right words. I've walked onto a nursing home unit and been greeted with "Thank God you are here." (And often when my presence was not on my planned weekly schedule. What was it that brought me to this place at this precise time?)
When it comes to miracles, I know we can't stop the angel of death from coming; all of us will meet him one day. But we can push back, and there are times when we can delay his arrival.
Part of my job is to be present, to watch for the miracles, and to name them. Chanukah reminds me that miracles do exist. They existed for our ancestors at this season, and they exist for us in these days.
Chag urim sama'ach! May our days be filled with light and may we be open to and aware of the miracles that daily fill our lives.
Tuesday, November 9, 2010
"Tell me in small words."
I was following up on a hospice referral this week and the nursing home staff told me that there was just one problem - the patient didn't have a payer source. "What?" I said. "There's no payer source." "I'm a chaplain. Tell me in small words," I replied. Once they finished laughing, they explained to me how this patient with an insurance company managed Medicare plan couldn't access benefits that general Medicare recipients have. It was one of several long, convoluted, and frustrating conversations I had around the issue.
Putting aside my personal feelings about this company and this issue, it occurred to me that there is a real benefit in getting and giving explanations "in small words." Hospice has a lot of jargon, as does health care in general. Those of us who work in any part of it become familiar with the lingo. At this point I can talk about "scheduled" medication vs PRN medication with the best of them. I know the medications we generally use and I usually understand what our nurses are talking about. When I have a patient in pain I know how to talk with a nursing home med nurse.
But when talking with our nurses and, especially, when talking with patients and families, I tend to use small words. I talk about a patient being "short of breath." I don't say he has "dyspnea." I talk about someone losing weight and "appearing gaunt" rather than saying she's "cachectic." I will mention apnea to families, but I always describe what that means and talk about what they will observe when a dying person has apnea.
I've also realized that I try to describe medical end-of-life issues in concrete everyday terms. For an actively dying patient with a fever that isn't responding to medication, I talk about the "body's thermostat" which is no longer working. For other questions I may talk about the "body's electric system." It isn't necessarily how a nurse would describe end-of-life medical issues, but the metaphors are the ones that work for me in understanding what happens as the body ceases to function. They also seem to be metaphors that help families understand what is happening.
I know lots of "big words," but I am convinced that sometimes the simplest, smallest words are the best way we can communicate. I'm going to keep the sentence "tell me in small words" in mind as I work with families in the hope that by using "small words" we will better understand and communicate with each other.
Putting aside my personal feelings about this company and this issue, it occurred to me that there is a real benefit in getting and giving explanations "in small words." Hospice has a lot of jargon, as does health care in general. Those of us who work in any part of it become familiar with the lingo. At this point I can talk about "scheduled" medication vs PRN medication with the best of them. I know the medications we generally use and I usually understand what our nurses are talking about. When I have a patient in pain I know how to talk with a nursing home med nurse.
But when talking with our nurses and, especially, when talking with patients and families, I tend to use small words. I talk about a patient being "short of breath." I don't say he has "dyspnea." I talk about someone losing weight and "appearing gaunt" rather than saying she's "cachectic." I will mention apnea to families, but I always describe what that means and talk about what they will observe when a dying person has apnea.
I've also realized that I try to describe medical end-of-life issues in concrete everyday terms. For an actively dying patient with a fever that isn't responding to medication, I talk about the "body's thermostat" which is no longer working. For other questions I may talk about the "body's electric system." It isn't necessarily how a nurse would describe end-of-life medical issues, but the metaphors are the ones that work for me in understanding what happens as the body ceases to function. They also seem to be metaphors that help families understand what is happening.
I know lots of "big words," but I am convinced that sometimes the simplest, smallest words are the best way we can communicate. I'm going to keep the sentence "tell me in small words" in mind as I work with families in the hope that by using "small words" we will better understand and communicate with each other.
Thursday, November 4, 2010
Cake
We had several patients with birthdays this week. I missed the 102nd!! birthday party of one patient, but I was part of celebrations for two other patients. They were special moments, reminding us that the work we do is about life and the celebration of life. And cake.
One patient was impatient. There was too much talk, and too much time waiting for everyone to get there to sing "Happy Birthday." You shouldn't have to wait for cake. So a finger reached out and swiped off a finger-full of frosting. It doesn't matter whether you're 3 or 83 - a birthday is about the cake and the frosting (and "all the pretty girls" surrounding you.)
Our second patient was having a bad day, not in any physical pain, but in bed, kind of gloomy. The room was dim and there weren't a lot of personal belongings brightening up the space. But when we came in with a big chocolate cake and announced we were there to celebrate the birthday, we got a smile. As we sang "Happy Birthday" and applauded, our patient glowed and gave us a big smile. One bite of the cake was enough, so we left the rest of the piece by the bedside "for later."
It was a good day. There was cake and frosting; singing and celebration. And two people were reminded that they have not been forgotten, that we can still celebrate and sing and laugh together as we give thanks for the blessing of time . . . and for one more piece of cake!
One patient was impatient. There was too much talk, and too much time waiting for everyone to get there to sing "Happy Birthday." You shouldn't have to wait for cake. So a finger reached out and swiped off a finger-full of frosting. It doesn't matter whether you're 3 or 83 - a birthday is about the cake and the frosting (and "all the pretty girls" surrounding you.)
Our second patient was having a bad day, not in any physical pain, but in bed, kind of gloomy. The room was dim and there weren't a lot of personal belongings brightening up the space. But when we came in with a big chocolate cake and announced we were there to celebrate the birthday, we got a smile. As we sang "Happy Birthday" and applauded, our patient glowed and gave us a big smile. One bite of the cake was enough, so we left the rest of the piece by the bedside "for later."
It was a good day. There was cake and frosting; singing and celebration. And two people were reminded that they have not been forgotten, that we can still celebrate and sing and laugh together as we give thanks for the blessing of time . . . and for one more piece of cake!
Tuesday, November 2, 2010
TGIN (Thank God it's November!)
Was it the changing weather? The cold? The increasing hours of darkness? Was it just something that happens now and again?
I don't know what it was, but I know that in October we had death after death after death. I think that last month we had the most deaths in a single month in the three+ years I've been doing hospice work. I've had some people say: "You're doing hospice work. What did you expect?"
I know that most of my patients will die. I also know that some of them will plateau or improve and come off of hospice services. I'm used to that. I'm not used to days when 3 or 4 people die, followed by days when 2 people die, followed by days when 2 more people die. I'm not used to day after day of trying to figure out which dying patient, or which family, is more in need of my presence and support.
Hospice staff juggle lots of tasks, but sometimes information sessions, new patient assessments, and dying patients require too many balls in the air. Invariably one or another gets dropped and bounces until we are able to scoop it up and toss it back in the air.
As I look back at October, I'm not sure which makes me sadder - the deaths of patients who came on hospice service and died in a few days, patients whose names I barely remember; or the deaths of long-term patients, patients whom I got to know well, patients whose family members I know, at least as voices on the other end of the phone line. All I know is that there were too many of them.
And I'm grateful that in the midst of all this loss, I took time to take care of myself. I can't imagine what the month would have been like without healthy food, exercise, educational opportunities, time with family and colleagues, and enough sleep. I'm grateful that October also was filled with bright days with sunlight sparkling off orange, red, gold and green leaves and vivid blue skies. The crisp air, cider donuts, and time driving in the car between patients were moments of rejuvenation in a month that was altogether too dispiriting.
I don't know what it was, but I know that in October we had death after death after death. I think that last month we had the most deaths in a single month in the three+ years I've been doing hospice work. I've had some people say: "You're doing hospice work. What did you expect?"
I know that most of my patients will die. I also know that some of them will plateau or improve and come off of hospice services. I'm used to that. I'm not used to days when 3 or 4 people die, followed by days when 2 people die, followed by days when 2 more people die. I'm not used to day after day of trying to figure out which dying patient, or which family, is more in need of my presence and support.
Hospice staff juggle lots of tasks, but sometimes information sessions, new patient assessments, and dying patients require too many balls in the air. Invariably one or another gets dropped and bounces until we are able to scoop it up and toss it back in the air.
As I look back at October, I'm not sure which makes me sadder - the deaths of patients who came on hospice service and died in a few days, patients whose names I barely remember; or the deaths of long-term patients, patients whom I got to know well, patients whose family members I know, at least as voices on the other end of the phone line. All I know is that there were too many of them.
And I'm grateful that in the midst of all this loss, I took time to take care of myself. I can't imagine what the month would have been like without healthy food, exercise, educational opportunities, time with family and colleagues, and enough sleep. I'm grateful that October also was filled with bright days with sunlight sparkling off orange, red, gold and green leaves and vivid blue skies. The crisp air, cider donuts, and time driving in the car between patients were moments of rejuvenation in a month that was altogether too dispiriting.
Wednesday, September 29, 2010
This week . . .
Working with hospice means that I spend my days surrounded by death and by life, often at the same time. This week I sat with a family as their mother was actively dying. I provided some education on the dying process and on pain management, I recited some prayers, but mostly I listened. The children held their mother's hand, stroked her forehead, and told stories. They laughed as they remembered family moments and as they spoke, the mother who had been lost to them by dementia over the past years became a vibrant presence in the room, even as her dying body struggled to take yet another breath.
This week I attended a wake. My Jewish sensibilities still make me uncomfortable with open caskets ("She looks so peaceful") no matter how often I've been exposed to them. And yet, going to the wake is a powerful moment of connection. It says to the family that we are haven't abandoned them. We're present for the dying, at the death or the pronouncement, and our care continues as we stay involved with the family for the year after their loved one dies. The wake also gives me the opportunity to view family dynamics and see what kind of support is present for the spouse, the child, the sibling. Knowing what kind of support is there helps us help the family.
This week I arrived at a nursing home just minutes after our patient died. The family was still present. I was able to offer our condolences, to remind them that our care and contact will continue for the next year, to give a needed hug, and to accompany them back to the bedside to offer final prayers. I hope my presence brought a measure of comfort. I know that the staff was grateful for my presence.
This week I wondered, as I often do, what rituals are there for the professional caregivers to help us when the deaths pile up around us. What does a funeral director or a chevra kadisha member do after they prepare a body for burial. How do they make a separation between their sacred work and their daily lives? I know of nurses whose custom when they get home is to strip off their work clothes, shower, wash their hair, and change into home clothes. Only then do they join their family, prepare dinner, read the mail. Others tell me they listen to specific music on their ride home to take them out of their professional caregiver role and back into their family role. I know of many personal rituals that we use to make a transition between what we do and who we are, but I wonder sometimes if we do enough to help us make the distinction.
This week I asked myself: How do I make sure that I am caring for myself and not being consumed by the care I give?
This week I attended a wake. My Jewish sensibilities still make me uncomfortable with open caskets ("She looks so peaceful") no matter how often I've been exposed to them. And yet, going to the wake is a powerful moment of connection. It says to the family that we are haven't abandoned them. We're present for the dying, at the death or the pronouncement, and our care continues as we stay involved with the family for the year after their loved one dies. The wake also gives me the opportunity to view family dynamics and see what kind of support is present for the spouse, the child, the sibling. Knowing what kind of support is there helps us help the family.
This week I arrived at a nursing home just minutes after our patient died. The family was still present. I was able to offer our condolences, to remind them that our care and contact will continue for the next year, to give a needed hug, and to accompany them back to the bedside to offer final prayers. I hope my presence brought a measure of comfort. I know that the staff was grateful for my presence.
This week I wondered, as I often do, what rituals are there for the professional caregivers to help us when the deaths pile up around us. What does a funeral director or a chevra kadisha member do after they prepare a body for burial. How do they make a separation between their sacred work and their daily lives? I know of nurses whose custom when they get home is to strip off their work clothes, shower, wash their hair, and change into home clothes. Only then do they join their family, prepare dinner, read the mail. Others tell me they listen to specific music on their ride home to take them out of their professional caregiver role and back into their family role. I know of many personal rituals that we use to make a transition between what we do and who we are, but I wonder sometimes if we do enough to help us make the distinction.
This week I asked myself: How do I make sure that I am caring for myself and not being consumed by the care I give?
Tuesday, September 28, 2010
Oops
This week I was the one who broke one of the big nursing home "rules." I was the visitor who let a resident leave a locked unit.
I was covering for a colleague, visiting a dying patient in a nursing home that I don't normally cover. Although I used to be a chaplain in the building, I'm not the chaplain now so I'm not familiar with the residents; I only know the staff. As I was leaving the floor, I caught up to a gentleman who had just reached the elevator. I looked at him as I fumbled around trying to figure out how the elevator worked. (It used to have a nice covering over the "down" button so you had to use your keys or a pen through the grill to press the button. Now there is a full covering and a small metal piece on a chain that "locks" it in place. You have to pull out the metal piece, lift the cover and press the button, then close the cover and replace the metal piece. I got the metal piece out, but didn't know to lift the cover, so I was jabbing the metal piece every which way until I figured it out.)
While wondering if I was going to have to go to the nurse's station and get help with elevator instructions, I assessed the gentleman. He wore nice trousers and a long-sleeved white button-down shirt. He was shaved and his hair was combed. There was no noticeable wristband or ankle bracelet. There was minimal conversation, but we didn't know each other. Resident or family member? There was no way to tell. I've met a lot of men his age who come daily or twice a day to visit their wives on the dementia unit and he looked more put together than many of them.
So when he got into the elevator with me, I didn't ask if he was supposed to be there. (There's really no polite way - "Excuse me. Do you have dementia?" "Are you allowed off the floor?") But there must have been something, because when I got off the elevator I thought, "I should check with a staff member."
There was no need. Almost immediately a staff member assisting another resident looked at him and asked, "'Bob.' What are you doing here?" Another came and gently took his arm, "Here, let's go this way." And another, "What's 'Bob' doing off the floor?"
Today, when I again visited that nursing home, I was greeted (among other things) with, "I hear you let 'Bob' off the floor yesterday." I apologized. They laughed. I have the feeling that this happens often with 'Bob.'
In many of the nursing homes I visit there's a resident who doesn't quite seem to belong on the floor. Someone who is still walking around; someone who remembers the social graces and can provide polite chit-chat. Perhaps it's someone who is no longer safe living alone. Or a person whose family can no longer provide the amount of care they need. I've met many family members, especially spouses, who have run their own health into the ground while caring for a loved one with dementia, until the needs become too great and a nursing home or assisted living is the best option.
And I've met residents who ask me to "get me out of here." One wants me to gather up her medical records "RIGHT NOW" because she has "a medical appointment and needs the doctor to see" that she doesn't "belong on an Alzheimer's floor." Another wants me to call her lawyer. "You can see that I should be living on my own. My daughter put me here. She sold my car. She lives in the South. I have a cousin who will help me. I just need you to call." I always talk to the staff. Again and again I speak with residents (not my patients) who present well and just want my help to "go home." I know that they are no longer capable of caring for themselves (and I've asked.) I know some of the stories. And it breaks my heart that I can't help them (and that they can't remember that I can't help them, so they repeat the request the next time they see me and the next.) Some days the hardest part of my job isn't the hospice patients.
But the next time I'm waiting for the elevator (or struggling to circumvent the lock that keeps the residents in,) I'm going to take a second and a third look at those people who are waiting with me!
I was covering for a colleague, visiting a dying patient in a nursing home that I don't normally cover. Although I used to be a chaplain in the building, I'm not the chaplain now so I'm not familiar with the residents; I only know the staff. As I was leaving the floor, I caught up to a gentleman who had just reached the elevator. I looked at him as I fumbled around trying to figure out how the elevator worked. (It used to have a nice covering over the "down" button so you had to use your keys or a pen through the grill to press the button. Now there is a full covering and a small metal piece on a chain that "locks" it in place. You have to pull out the metal piece, lift the cover and press the button, then close the cover and replace the metal piece. I got the metal piece out, but didn't know to lift the cover, so I was jabbing the metal piece every which way until I figured it out.)
While wondering if I was going to have to go to the nurse's station and get help with elevator instructions, I assessed the gentleman. He wore nice trousers and a long-sleeved white button-down shirt. He was shaved and his hair was combed. There was no noticeable wristband or ankle bracelet. There was minimal conversation, but we didn't know each other. Resident or family member? There was no way to tell. I've met a lot of men his age who come daily or twice a day to visit their wives on the dementia unit and he looked more put together than many of them.
So when he got into the elevator with me, I didn't ask if he was supposed to be there. (There's really no polite way - "Excuse me. Do you have dementia?" "Are you allowed off the floor?") But there must have been something, because when I got off the elevator I thought, "I should check with a staff member."
There was no need. Almost immediately a staff member assisting another resident looked at him and asked, "'Bob.' What are you doing here?" Another came and gently took his arm, "Here, let's go this way." And another, "What's 'Bob' doing off the floor?"
Today, when I again visited that nursing home, I was greeted (among other things) with, "I hear you let 'Bob' off the floor yesterday." I apologized. They laughed. I have the feeling that this happens often with 'Bob.'
In many of the nursing homes I visit there's a resident who doesn't quite seem to belong on the floor. Someone who is still walking around; someone who remembers the social graces and can provide polite chit-chat. Perhaps it's someone who is no longer safe living alone. Or a person whose family can no longer provide the amount of care they need. I've met many family members, especially spouses, who have run their own health into the ground while caring for a loved one with dementia, until the needs become too great and a nursing home or assisted living is the best option.
And I've met residents who ask me to "get me out of here." One wants me to gather up her medical records "RIGHT NOW" because she has "a medical appointment and needs the doctor to see" that she doesn't "belong on an Alzheimer's floor." Another wants me to call her lawyer. "You can see that I should be living on my own. My daughter put me here. She sold my car. She lives in the South. I have a cousin who will help me. I just need you to call." I always talk to the staff. Again and again I speak with residents (not my patients) who present well and just want my help to "go home." I know that they are no longer capable of caring for themselves (and I've asked.) I know some of the stories. And it breaks my heart that I can't help them (and that they can't remember that I can't help them, so they repeat the request the next time they see me and the next.) Some days the hardest part of my job isn't the hospice patients.
But the next time I'm waiting for the elevator (or struggling to circumvent the lock that keeps the residents in,) I'm going to take a second and a third look at those people who are waiting with me!
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