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?
Wednesday, September 29, 2010
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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