Mary is sitting in her usual corner. She just rocks herself in her chair and cries most of the day. She doesn’t have a rocking chair anymore but grips the wooden arms of the chair fiercely and rocks her upper body to and fro. I squat down in front of her and touch her hand.
"Hi Mary, how are you today?" She glances quickly at me and then away.
"Hi Mary, will you sing with me? Let’s sing ‘Frère Jacques.’ " She glances at me again, then away. But she has stopped crying.
"Let’s sing together, Mary. Will you help me?"
"Yes," she says in a tiny voice. I begin to sing, tapping out the beat on her knee.
"Come on Mary, I need you to help me."
I begin again. She doesn’t sing but nods her head in time to the tune, finally joining in at ding dong bell with a "hee hee hee, hee hee hee."
"That’s good, Mary. We’ll sing again later." As I move on to greet Tom in the next chair, Mary begins to rock and cry again.
The nursing home where I work has a good reputation in the local community. It’s gone through various changes over the years; for a while it was the "sanatorium," now it is long-term care and rehabilitation. Almost everyone knows someone who died here. Many people come here from hospital, too sick to go home, and many do indeed die here. Others come for a brief stay in the rehabilitation unit and then return home.
I am officially part of the activities department here. In our department, what I can only describe as the Hallmark liturgical year rolls relentlessly on: Valentine’s Day, Saint Patrick’s Day, Easter, Mother’s Day, and so on. Patients make buttons saying "Happy Valentine’s Day," then Easter bunnies, then they decorate baskets. . . .
I am rarely a part of all this busyness; my work is a little different. I spend almost all of my time on "West." West Wing is a mixed unit that has a large number of patients with dementia. Most of these have Alzheimer’s disease (AD). These are the people with whom I interact during my work hours. On West we are beyond making Easter bunnies.
When I arrive at the nursing home for my shift, I take my "toy cart" where we keep our supplies of balls, beanbags, and puzzles and push it along the corridor from the activities room to the West Wing. Please Open Door Slowly, warns a tattered, handwritten sign taped to the door. I slowly push open the heavy door, back against the wall where a magnetic catch will hold it. I push my cart through and reach back with my left hand to pull the door loose and let it close behind me with a clunk. Please Keep Door Closed, says the sign on this side.
I’m heading for the solarium, which is almost halfway down this long corridor, opposite the nurses’ station. The walls are painted pink. Fluorescent tubes provide lighting 24 hours a day. There are open doors on both sides into small rooms with two beds in each. This is the short end with several residents who are long-term but not dementia patients. I push my cart down the short end. I wave to Nell who waves back; she is never out of bed in the afternoons. Elsie is sitting in her room reading the newspaper. Bridget is sitting in her doorway looking for a bit of company.
"Where are you going?" she asks me.
"Down to the solarium, Bridget. Do you want to come and join us?" She makes a face and says, "Maybe I will."
Near the nurses’ station, Norma is lying back in her geri-chair in the doorway of her room. She opens her eyes wide as I go by and smiles.
"Well, what are you doing here?" she asks.
"I came to see you, of course."
From the photograph on her bureau behind her a middle-aged couple smiles happily. Norma can no longer remember her husband’s name, but she can usually tell me the names of her sisters and brothers. The three beautiful young women gaze out serenely from the family portrait, Norma the middle one.
"You’re the prettiest," I always tell her.
"Watch out, she’s very combative today," the nurse warns me. Norma has an alarm clipped between her sweater and her chair. She is at risk for falling if she tries to get out of her chair alone, but she is always trying to get out of her chair. Restraints are illegal in the nursing homes so these alarms alert us to the fact that someone is trying to stand or walk. The noise the alarms make is unbelievable. They distress the residents and set up a lot of agitation and yelling. It gets very noisy here on bad days.
I park my cart next to the nursing station and push Norma’s chair into the day room. She enjoys being in company, but the aides usually leave her in the doorway of her room. I find about ten people in the solarium: a big room with floor-to-ceiling windows and glass doors at the far end. It’s chilly in winter but hot as hell when the sun hits that glass.
First, I go around the room and greet those who are awake. During the afternoon, the Certified Nursing Aides (CNAs) will bring more patients into this room until it is so crowded it becomes difficult to move around. Most patients are in wheelchairs but some can still walk with the help of a walking frame. I usually have about 14 residents in the solarium.
I greet everyone: Mary who is rocking and crying in her corner, Vicki clutching her doll and wanting kisses, Jack dozing in his chair, Patsy who smiles sleepily and says, "Hello Sweetheart" while unbuttoning her sweater to show me the shirt she is wearing, Annie who wants to know if the children are home from school yet, Stella who is mercifully quiet today. I bring the brightly colored beach ball in to see who will play ball today. Norma enjoys this game. She catches the ball when I throw it to her. She holds it up in front of her face, then peeks round the side to watch my reaction. We giggle together. Two aides come to take her to the bathroom.
"Let’s take a walk, Norma."
She strikes out angrily at them as they try to help her out of her chair. Taking people to the bathroom is done on a list system and heaven help anyone who needs to go at an odd or inconvenient time. I am forever telling an aide that a patient needs to go to the bathroom, only to be told, "Well, she’ll have to wait, we’re doing such and such now."
Kathleen sits between Mary and Patsy. She must always have been a small woman, and now at 91, she seems tiny like a bird that dashed itself against my windows.
"Hey! Are you going to help me?" she yells as soon as she catches sight of me.
"Hi Kathleen." I squat down in front of her so she can see my face as I smile at her.
"Hi." She grins. "You’re such a cute thing."
I think Kathleen must be the only person in the world who can call me a cute thing and get away with it. She catches sight of my earrings, "Oh, I like those." Her face lights up in a winter smile as she fumbles at my ear.
"You have to have pierced ears," I tell her. "Do you have pierced ears?"
"I don’t know."
"They’ll do it for you in the store. It doesn’t hurt."
"Oh. In the store?"
"You get your ears pierced, and I’ll get you some earrings like this, okay?"
"You will?" She looks delighted. We have this conversation several times a day.
"Do I need a haircut?" She tugs at her shaggy silver hair.
"I’ll make an appointment for you," I promise.
Kathleen dismisses my attempts to interest her in a magazine, a talk, a game.
"I don’t want to . . . I don’t want. . . ."
Later though, when we are playing kick-ball, Kathleen’s foot in its neat brown shoe gives a little kick to the ball when I send it in her direction. I pretend not to notice. Every couple of minutes she yells,
"Please help me! Lord, please help me! Hey! Are you going to help me?"
But when I ask her what she wants, she doesn’t know. Finally I tell her, "Hush, we mustn’t wake the baby." I point to where Vicki is sitting clutching her doll three seats away from Kathleen.
"What baby?" she asks me, suspiciously.
"Mrs. Carpenter’s baby, she’s just got him to sleep."
That keeps her quiet for a few more minutes. I continue with ballgames, a bean- bag toss, and individual visits with people until 4:30 when it is time to get organized for supper.
After I have wheeled or escorted the half-dozen or so residents who eat in the dining room, I return to West and sit near Norma, persuading her to eat some of her supper.
"Norma, here’s your sandwich. Take a bite."
From time to time I cross the room to Patsy who is falling asleep again, her head dipping onto her supper tray.
"Patsy, wake up. Look! You have some soup."
I scoop some soup onto her spoon and put the spoon in her hand.
"Put it in your mouth." She looks puzzled.
"In your mouth, Patsy."
In this way I manage to coax Patsy and Norma and Kathleen to eat something. The CNAs are busy feeding patients who can no longer feed themselves at all and so, although I am not supposed to put food into a patient’s mouth, I do try and help in this way. Kathleen takes three bites of her grilled cheese sandwich, then flings it down on her tray.
"I don’t want any more."
She struggles to her feet and grips her walking frame.
"I’ve got to get out of here!"
Slowly she walks out of the day room. At the doorway she pauses. "Where am I going?" she yells to anyone who will listen.
I point her down the hall to her room. She’ll be back in three minutes yelling, "Where am I going to sit?"
Today Kathleen is wearing a dark blue denim skirt. It is much too long for her now. I pin up the hem so that she will not trip and fall. Kathleen had a birthday last week. The nurse asked her how old she was.
"Five," she answered, as if anyone should know that.
After supper, Norma thinks we should make a call to her mama, but I tell her it’s a long distance call from here, so we’ll wait until tomorrow. Norma nods her agreement.
The population changes of course. During the 18 months I have been working there, 12 people have died. And new people come.
When someone from my meeting asked me what I got out of my work, I was stumped for a bit. Partly I get the occasional stunning moment—like Kathleen and her wedding album that is a gift to a poet, or Joanna telling me about the Nile green dress she danced in. It is as if there is a dark place and you can open little windows of light for a moment.
"But isn’t that for them, though?"
Maybe, but it’s for me too. The thing is, there are absolutely no pretenses in these interactions on West. All the social niceties we value so highly are gone, totally gone. That makes for a very direct connection. The only way I have found to reach these patients is to beam love at them, close up and full power. I believe people do feel that love, even if only for a moment. Yes, I get something in return: they see me as a friend, they trust me, and love me in return in a way.
The problem—and that’s why I asked my meeting for a clearness committee—is that the work is exhausting when you have no support system or backup. It’s emotionally draining, and the physical circumstances are pretty hard too: hours on my feet on a cement floor, the room usually overheated. I keep thinking about the work, why I am doing it, how hard it is, how desperately important it is, and how I feel I can’t do it much longer. I have been asking myself why there isn’t a ministry to nursing homes. Especially, why isn’t there a ministry to people with Alzheimer’s disease and other dementias?
What would such a ministry look like? I know nothing about the inner life of
the AD patient. If you don’t know what to do with a spoon of ice cream when I
put it into your hand, what does your inner life look like? In a way, though, that doesn’t matter.
Most of the patients I see regularly know me in a way. They don’t know my name or my job or anything like that, but they seem to know I am their friend. It must make a difference to have a friend. I believe that love does reach people in the place where they are, even if they know it only for a brief moment. I don’t know what that place is like and I hope I never will, but I sense it is sometimes frightening, sometimes puzzling. A person in the later stages of dementia seems usually less frightened. So a ministry to the dementia patient must be one of companioning and befriending. It would have to include regular visits so you become a familiar face. You need to be someone who can be at home in a very odd sort of world.
I find myself frustrated and disappointed at the lack of contact with local faith communities and with the inappropriate nature of some of these contacts. Lilian, for example, still gets the newsletter from her church. It’s in 10-point font. She can’t read it. Actually she couldn’t read it now if it were in 50-point. Lilian used to be a librarian and is happiest when she has some books to move around and arrange, but she can’t read anymore. I open her mail for her and read the prayers and scripture passages in the newsletter, hoping that some of the familiar words reach a place in her mind. But I always have the impulse to rush out to the minister of this church and haul him into the nursing home and say, "Look! It’s no good sending her this newsletter. She can’t read it; she doesn’t know what it’s about. You have to do better than this."
A ministry to those with AD might have to include playing ball and doing very simple puzzles and winding yarn. It might include looking at family photographs with Norma and reminding her of the names of her brothers and sisters when she forgets them, or looking at Kathleen’s wedding pictures with her. It might include singing "Frère Jacques" with Mary because that’s the only way to stop her crying for a while; it would include playing cards (War!) with Julian and finding the newspaper for Annie to read in the afternoon even though none of it makes sense to her anymore.
But it would need a friend for the ministers too. I find I carry home a lot of sad and heavy things because I have nowhere else to go with them. Some-times I feel as if I am on a desert island and ships are going by just out of reach of the sound of my voice or the sight of my frantic help signals.
At about 7:15 I begin to go around the room again, saying goodnight to those still there and still awake. I explain that I am going home now and will be back tomorrow. "Have a good night’s rest. Goodnight."
Norma looks puzzled.
"We can find a bed for you here," she tells me, with an expansive gesture.
"I’ll come tomorrow," I promise.
"I always look forward to your visits," Norma assures me, and I glimpse for a moment the gracious hostess she must have been.
"Have a good night’s rest. Sleep with the angels."
I take my cart and push it back down the corridor. I pull open the door and let it close behind me.