Tricks of the trade

It's easy to learn about being a chaplain. It's much harder becoming one. Applying book learning is difficult when you're sitting next to someone who doesn't respond and you're thinking, "O dear God, what do I do next?" Time seems to expand, minutes turning into hours, as you sit and think of every possible intervention. You try one. No response. You desperately try another. No response. A third. "How did the previous chaplain manage to spend 30 minutes with this person," you wonder. And then you start to learn the secrets and the tricks of the trade.

The hardest thing to learn is to do nothing. I learned it from some of my Christian colleagues - Ministry of Presence - or, as a friend explained it to me: "Don't just do something, stand there!" It's difficult to just be with someone; to stay in the moment. It's easy to have your mind wander. "What will I cook for dinner?" "Have I been here too long - what will the traffic be like when I leave?" But when I stay in the moment, I connect with patients. They know I'm there. That's one of the interesting things about dementia. A patient who can no longer talk can't be fooled by words, by a "chipper" tone of voice, by a fake smile. They read body language. They know if I'm not present. Often when I relax, they relax. When I really smile at them or laugh, they smile and laugh in return. We make a connection. In that connection, we transcend the boundaries of time. Instead of minutes turning into hours, time ceases to matter. We're just there, in the moment, together.

I've learned other "tricks" in my work. But the best, the most useful, and some days the hardest of all, is to just be there.

"Can you hear?"

I was sitting with a new patient as part of my initial assessment. The following conversation took place:

Patient to me: "Can you hear?"

Me, puzzled: "Yes?"

Patient: "What do you hear?"

Me, listening intently: "I hear a machine running on the other side of the room."

Silence.

More silence.

Then I asked: "What do you hear?"

Patient: "Voices."

No answer as to what the voices were saying. I sat silently while my patient looked off in the distance and continued to listen.

"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.

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.

Seeing ghosts

As I travel around town I often have the feeling that I'm seeing ghosts. Perhaps "ghosts" is not the right word. I'm seeing memories. I look off to the side as I barrel down the highway and there is M's house with the big picture window where she watched the snow and the birds and the dog. I go under an overpass and remember the road to R's small house. I think about his caregivers and the "family" he brought together and wonder how they are doing. I travel a road that I think is new - but wait - if I turn to the right doesn't that bring me to . . . what-was-her-name's house? I was only there one time but I can picture the couch where she rested, just inside the front door.

I remember the places, the roads, the furniture, where we sat and what we said, but I can't remember all the names. I remember this one's name and that one's caretaker. I remember the cat that sat and purred and cuddled up to my patient and the dog that barked as if I was the enemy coming onto his turf.

In the nursing home I pass by the rooms where I spent so much time. Now there are different names on the doors. The family pictures have been replaced by sports banners. The stuffed animal is gone. It doesn't look the same, but out of the corner of my eye I think I see . . . no . . . he's gone. It's an illusion, a wisp, a memory.

I don't really believe that the spirits of my patients are hanging around waiting to manifest themselves as I drive by, but my memories of them remain a part of my life. This is the road. There is the house. That was the room.

I remember. May their memory be for a blessing.