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!
Showing posts with label dementia. Show all posts
Showing posts with label dementia. Show all posts
Tuesday, September 28, 2010
Wednesday, August 11, 2010
Elul
One of my favorite things to do at this time of year is take my shofar with me to work. From the beginning of Elul until Yom Kippur, I have it with me. I sound it for my Jewish patients. I let the nursing homes where I work know what it is, why I have it, and that I will visit any Jewish resident so that they can hear the sounds of the shofar. In a nursing home with a younger, more alert, special needs population, the activity department and I schedule a program so that the Jewish residents can prepare for the New Year.
In a job where almost everyday provides the unexpected, I never know what to expect once I take out the shofar. I do a lot of education with staff and residents at this time of year. I never sound the shofar without making sure that everyone around me knows what I'm doing -- especially when I'm on a dementia unit.
Sometimes there are moments of serendipity, of grace. I'm in a nursing home doing a spiritual assessment on a new patient. We're meeting in a corner of the activity / dining room. The activity director, spotting my kipah, comes over to tell me that they are making "cards for the Jewish New Year." I am able to respond not only by coming over to meet the residents and talk about the meaning of the New Year, but by saying, "I have a ram's horn in the trunk of my car. May I go get it so that your residents can hear the sound of the New Year?" And while I have it, a nurse mentions a bed-bound Jewish resident down the hall and I am welcomed into her room so that she can hear the sound of the shofar. "Her family will be so happy when we let them know that you were here."
I'm visiting one of my Jewish patients. We sit in her room and I talk to her about the season. There's no response today, no eye contact, no acknowledgment that I'm present. I take out the shofar and blow it. Her head jerks up, her eyes open, and, for a moment, she's there.
Another patient, another home - my patient is a 100 + year old Holocaust survivor. We visit in front of her room, by the nurses' station where she sits each day. I take out the shofar -- Tekiah -- and the woman sitting next to her in the hallway glares at me and loudly asks, "What are you trying to do - wake the dead?"
Another survivor. Not yet my patient, but when I talk on the phone about hospice with her out-of-state son, he asks that I take in the shofar so that she can hear it. It turns out she's in a different place in her dementia. The shofar scares her. When I greet her in Hebrew or Yiddish she gets agitated and motions me to be silent. She responds to me and converses only when I greet her in Polish. Unfortunately my Polish extends only to "good morning," "how are you," and "thank you," but that doesn't stop her from taking my hand and talking to me - as long as the shofar is not in sight.
Once again it's Elul. This morning I opened my living room cabinet and took out my shofar. I don't know what the next month will bring, but I do know that for my Jewish patients it will include the sounds of the shofar as, together, we prepare to either close the Book of Life or to greet the New Year.
In a job where almost everyday provides the unexpected, I never know what to expect once I take out the shofar. I do a lot of education with staff and residents at this time of year. I never sound the shofar without making sure that everyone around me knows what I'm doing -- especially when I'm on a dementia unit.
Sometimes there are moments of serendipity, of grace. I'm in a nursing home doing a spiritual assessment on a new patient. We're meeting in a corner of the activity / dining room. The activity director, spotting my kipah, comes over to tell me that they are making "cards for the Jewish New Year." I am able to respond not only by coming over to meet the residents and talk about the meaning of the New Year, but by saying, "I have a ram's horn in the trunk of my car. May I go get it so that your residents can hear the sound of the New Year?" And while I have it, a nurse mentions a bed-bound Jewish resident down the hall and I am welcomed into her room so that she can hear the sound of the shofar. "Her family will be so happy when we let them know that you were here."
I'm visiting one of my Jewish patients. We sit in her room and I talk to her about the season. There's no response today, no eye contact, no acknowledgment that I'm present. I take out the shofar and blow it. Her head jerks up, her eyes open, and, for a moment, she's there.
Another patient, another home - my patient is a 100 + year old Holocaust survivor. We visit in front of her room, by the nurses' station where she sits each day. I take out the shofar -- Tekiah -- and the woman sitting next to her in the hallway glares at me and loudly asks, "What are you trying to do - wake the dead?"
Another survivor. Not yet my patient, but when I talk on the phone about hospice with her out-of-state son, he asks that I take in the shofar so that she can hear it. It turns out she's in a different place in her dementia. The shofar scares her. When I greet her in Hebrew or Yiddish she gets agitated and motions me to be silent. She responds to me and converses only when I greet her in Polish. Unfortunately my Polish extends only to "good morning," "how are you," and "thank you," but that doesn't stop her from taking my hand and talking to me - as long as the shofar is not in sight.
Once again it's Elul. This morning I opened my living room cabinet and took out my shofar. I don't know what the next month will bring, but I do know that for my Jewish patients it will include the sounds of the shofar as, together, we prepare to either close the Book of Life or to greet the New Year.
Friday, June 11, 2010
"I'm going to put on my dress and go dancing."
A lot of time when people talk about memory loss and Alzheimer's or other forms of dementia, they talk about losing your memory backwards - losing what is most recent first and holding on to earliest memories the longest. We usually use this simple explanation to talk about short term and long term memory. But when we do this, we often ignore the fact that there are many types of memory (or many components to a single memory.) There is body memory, sense memory or emotional memory, working memory, episodic memory and more.
As I continue to work with this population, I keep reading and learning about memory. Two books that I found very helpful are John Zeisel's I'm Still Here and Forget Memory: Creating Better Lives for People with Dementia by Anne Davis Basting. But book learning only takes you so far. Much more of my learning is experiential and comes from spending time with my patients.
Every time I think I understand dementia, I have an encounter with someone that teaches me that I only know a little bit. I meet a woman and say, "It's nice to meet you." She responds, "I'm happy to meet you." This is going well, I think, and I continue, "My name is Chana Sorel." She says, "Chana. That's a nice pumpkin. I go walking. My stone is my daughter, my friend. And you? Who did the plant go?" And she continues. It sounds like speech. There are words I recognize. She looks like what she's saying makes perfect sense. And I have no clue. So I respond to the tone or to a word or phrase that maybe makes sense to me. And she smiles. And I smile. And we talk. Finally I say, "Thank you for talking with me. May I come visit you again?" And she says, "It was nice to meet you." Her social memory is intact (at least in the moment) even if her words are incomprehensible.
One woman's words are clear, but not responsive. "Hello. I'm pleased to meet you," I say. "Oh," she says. "You play the piano? Play something for us." And I'm dumbstruck, without a response.
Someone else mostly hums. Some days she says a word or two, or she laughs. I start singing "Michael Row the Boat Ashore" and suddenly she's humming "Michael Row the Boat Ashore." I search my brain for every song I know that might get a response. Soon the whole room is singing. Other patients are asking, "What are we going to sing next?" And my patient is humming along to every song we sing.
I walk by a room and a gentleman has a sewing machine. In other room a woman pulls out her knitting and another crochets an afghan just like dozens she has already made for her children and grandchildren. The commonality: they all have dementia. And they are all human beings making connections with us any way they can.
As I visit with a woman, she looks down the hall at something only she sees and says, "I'm going to put on my dress and go dancing." I hope when my turn comes I'll be going dancing too.
As I continue to work with this population, I keep reading and learning about memory. Two books that I found very helpful are John Zeisel's I'm Still Here and Forget Memory: Creating Better Lives for People with Dementia by Anne Davis Basting. But book learning only takes you so far. Much more of my learning is experiential and comes from spending time with my patients.
Every time I think I understand dementia, I have an encounter with someone that teaches me that I only know a little bit. I meet a woman and say, "It's nice to meet you." She responds, "I'm happy to meet you." This is going well, I think, and I continue, "My name is Chana Sorel." She says, "Chana. That's a nice pumpkin. I go walking. My stone is my daughter, my friend. And you? Who did the plant go?" And she continues. It sounds like speech. There are words I recognize. She looks like what she's saying makes perfect sense. And I have no clue. So I respond to the tone or to a word or phrase that maybe makes sense to me. And she smiles. And I smile. And we talk. Finally I say, "Thank you for talking with me. May I come visit you again?" And she says, "It was nice to meet you." Her social memory is intact (at least in the moment) even if her words are incomprehensible.
One woman's words are clear, but not responsive. "Hello. I'm pleased to meet you," I say. "Oh," she says. "You play the piano? Play something for us." And I'm dumbstruck, without a response.
Someone else mostly hums. Some days she says a word or two, or she laughs. I start singing "Michael Row the Boat Ashore" and suddenly she's humming "Michael Row the Boat Ashore." I search my brain for every song I know that might get a response. Soon the whole room is singing. Other patients are asking, "What are we going to sing next?" And my patient is humming along to every song we sing.
I walk by a room and a gentleman has a sewing machine. In other room a woman pulls out her knitting and another crochets an afghan just like dozens she has already made for her children and grandchildren. The commonality: they all have dementia. And they are all human beings making connections with us any way they can.
As I visit with a woman, she looks down the hall at something only she sees and says, "I'm going to put on my dress and go dancing." I hope when my turn comes I'll be going dancing too.
Monday, June 7, 2010
Easy to love
Referring to patients as "cute" is not politically correct. Some people will talk about how "cute" is demeaning or patronizing. I understand this, I really do. And yet I do have patients who I think are cute. There is the woman who, when I sit down to spend time with her, grabs my hand and kisses it. As she's doing this, she says "I love you, honest to God I do." And I respond, "I love you too." Her affection, her demeanor, her attitude brightens my day. I know she has dementia; that she doesn't remember that I've visited before. I know she tells other people she loves them and I know she makes fun of other people - probably of me too when I go to visit someone else. But I love to visit her. And she thinks I'm cute.
I stop in to see a gentleman and ask, "How are you today?" He responds, "I'll show you," and gets up and does a little dance. Out of breath, he sits back down and gives me a big smile. I visit someone else, begin to tell her who I am, and before I finish my introduction she says, "Oh, I know you. You gave me my rosary." Later she says, "I always feel uplifted when you come to see me."
Perhaps they're not "cute." Maybe they're just easy to love. I'm the one whose day is uplifted, who feels loved, who gets to laugh and dance and sing when I visit them.
As I was visiting one of my sweetest, "cutest" patients today, I thought about what it means to be cute. Maybe, as with babies, it's an adaptive advantage to be cute when you're old. It's not fun to become frail and dependent. If we see someone as "cute," we can push away for a moment our own fears of aging and dying and really be there, be present, for our patient. With babies, the cute outweighs the "ick" factor. With babies we get to watch them change and grow and learn - and we know that "frail" and "helpless" and "dependent" are just for right now. At the other end of life, however, we watch people change and forget and need more and more assistance. It gets harder and harder for the family. While it, too, may be just for right now, when the "right now" is over we've lost someone we loved. Or, with dementia, we lose the one we love over and over again, piece by piece. Is it easier when that person is "sweet" or "cute?" I don't really think so. But if "cute" gets you in the room, if it means you come again and again to visit, and enables you to see the essence, the soul, of the person you are with, maybe it's not so bad.
I stop in to see a gentleman and ask, "How are you today?" He responds, "I'll show you," and gets up and does a little dance. Out of breath, he sits back down and gives me a big smile. I visit someone else, begin to tell her who I am, and before I finish my introduction she says, "Oh, I know you. You gave me my rosary." Later she says, "I always feel uplifted when you come to see me."
Perhaps they're not "cute." Maybe they're just easy to love. I'm the one whose day is uplifted, who feels loved, who gets to laugh and dance and sing when I visit them.
As I was visiting one of my sweetest, "cutest" patients today, I thought about what it means to be cute. Maybe, as with babies, it's an adaptive advantage to be cute when you're old. It's not fun to become frail and dependent. If we see someone as "cute," we can push away for a moment our own fears of aging and dying and really be there, be present, for our patient. With babies, the cute outweighs the "ick" factor. With babies we get to watch them change and grow and learn - and we know that "frail" and "helpless" and "dependent" are just for right now. At the other end of life, however, we watch people change and forget and need more and more assistance. It gets harder and harder for the family. While it, too, may be just for right now, when the "right now" is over we've lost someone we loved. Or, with dementia, we lose the one we love over and over again, piece by piece. Is it easier when that person is "sweet" or "cute?" I don't really think so. But if "cute" gets you in the room, if it means you come again and again to visit, and enables you to see the essence, the soul, of the person you are with, maybe it's not so bad.
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