Rachel Simon's Blog

I worry that I’ll get lost, but she is at my side, guiding me, saying, “Around this corner, down this hall.” I put my trust in her, and we walk forward.

I am a hospice volunteer. Usually that means I visit terminally ill patients in their homes, which might be actual houses, though they might be Alzheimer’s facilities. When I see my patients, I ask what they would like me to do. Sometimes I sit quietly across the room while they sleep. Sometimes I engage them in conversation. Maybe we sit on their patio, window-shopping past their memories.

My role is to serve them. My goal is to love.

People ask why I do it. When they too volunteer in some capacity, I can skip the part of the answer that involves words like “giving”, “setting myself aside”, and “doing unto others”, and move directly to the chain of losses that nudged me toward this specific form of giving. But when the idea of volunteering is foreign to them, either because they have too many other commitments or find the very notion baffling (as one person said to me, “Why would I do anything for a stranger—for free?”), I get stuck in what is only a prefix to the real answer.

I suppose if I had to boil it down, I’d answer this: “Because everyone deserves to die with a caring person beside them.”

“Now,” my own guide says, pausing at the elevator, “up to the sixth floor.”

The hospice movement began in the 1960s, when a British medical social worker, Dame Cicely Saunders, started giving lectures about how she was inspired by a dying patient to think about options besides medical settings where patients could go to die. Then Dr. Elisabeth Kubler-Ross published her famous “On Death And Dying,” which brought the process of dying out of the shadows. Soon a philosophy formed that said dying patients have the right to palliative, emotional, and spiritual care, and to focus on quality of life over cure.

Most people think of hospice as being in its own building, and in some cases that’s still true, though a substantial portion of patients are served in their homes. The agency for whom I volunteer, Compassionate Care Hospice, in northern Delaware, didn’t even have a separate building for many years. But recently, St. Francis, a local hospital here in Wilmington, DE, found itself with an unoccupied floor, and an arrangement was made. And so today, led by Anne, the staff person who trained me in giving, I am visiting this in-patient unit for the first time.

The elevator doors open.

To my surprise, Anne and I step out into a space with carpets and plants, upholstered furniture and sunlight. The effect is more homey hotel than austere hospital, a place not of cure but of kindness. My confusion about our way here begins to recede, a process hastened by my meeting the receptionist, with her gentle smile.

The nurses, too, sense my disorientation. They say hello, and their looks are rich with acceptance. I can be lost, I think, as I shake their hands and learn their names, but they’ll be here with me, letting me feel whatever might feel, being understanding if I should need a helping hand.

Anne takes me through my tour.

The facility has fourteen beds, each in its own room, each decorated with patchwork quilts, living room-style chairs that open into beds for family sleepovers, old-fashioned blinds, earth tones. There is a family room where relatives can watch television, sit quietly, or talk to each other, while their parent, spouse, sibling, or child sleeps. One side of the family room has been specially set up for children, with a small table, chairs, and coloring books.

The families also have access to a full kitchen – complete with cookies and other treats brought in by the staff.

There is even what Anne calls a quiet room, which looks like a nondenominational chapel (hospice is for people of any faith, including no faith at all). “Families can come in here,” she says, “when they need to be alone, or to pray, or to cry.”

But I do not see tears today.

There is only one patient in the unit, and I see him only fleetingly, when his door happens to be open and we walk by. A gray-haired woman is with him—his wife, maybe—and she smiles at us, and waves.

And as we continue on, and I walk past the empty rooms which, someday soon, will be occupied by the kind of people who led me, as Anne is leading me now, to hospice, I remember so much more than tears.

There, flashing quickly before me in an empty room, is Angelo, the father of my best friend from fifth grade. A bank teller, jazz drummer, and man of wit and folk wisdom, he had opinions on just about everything—and an open mind if challenged. I think of him before the cancer, at his kitchen table, he in his late sixties, I in my thirties. He is holding up a carton of milk, pontificating about the appalling way most people open the spouts by pushing their fingers inside the folds of the lid. Then I remember his daughter, still my good friend, on the day of the funeral. She is saying to me, “Those people in hospice were amazing.” That is the first time I hear about hospice, and immediately I want to know more.

There, in the next room, I see my best memory of Kenny. A friend who was the bookkeeper at my food cooperative, he told me, soon after we first met, that he could eat whatever he wanted, because he was HIV-positive, and someday he’d be getting too thin. I was in my mid-twenties, he in his mid-thirties, and the closer I got to him, the more I worried. When I learned, a few years later, that he’d come down with pneumonia, I worried harder. When I learned, a few months later, that he’d caught it again, I knew. He left the food cooperative and settled into bed at home. I said, “I’ll come to see you every week,” and for the better part of the next two years, as his partner John tended to him, I did. I hadn’t yet heard about hospice, but, as I later learned, I was practicing it. When I came, John was able to take a break, and Kenny was able to have company. I sat on his bed, listening to his stories about his life, his sadness over the life he wouldn’t have, his happiness about all the love he’d come to know. We never cried. We laughed, especially when he sang along to his favorite Bette Midler video. He had a big booming laugh, and that is what I envision now: his head back, his mouth open, our hearts open wide to the world.

I see others in my memory as we proceed down the halls. The ones killed by accidents, brain hemorrhages, undiagnosed heart conditions, who went too fast to know they were going. What their families would have given for the pause before it was over, for the opportunity to hug, or listen, or assure them someone was there. For what each of their losses taught me was the luxury of hospice.

And then I imagine the patient I have been visiting for the last several months. We also do not cry. With her Alzheimer’s, I’m not even sure she knows she’s going. Sometimes she’s distressed because she’s convinced her mother—dead for decades—is expecting her, but she can’t find the door out. Sometimes she thinks the floor is a cliff and she’s going to fall off. I touch her hands and speak to her. I ask her to tell me about her mother. I suggest we look up from the floor to watch a video of Lawrence Welk. And on warm days, I offer to wheel her outside. She loves the sun, and we sit on the patio, getting warm. I ask her if she wants to sing, and she always does. That is what I see now: us sitting on the patio, singing “America The Beautiful” or “When You Wish Upon A Star.” Singing is good for the memory, I’m told. But as I know from Kenny, it’s just as good for the soul.

“Why do you do it?” people ask.

I think about this question again, as Anne and I say goodbye to the nurses.

She leads me back down the labyrinth of hospital corridors, away from this place of loss and love, where I will spend so much time in the months to come, and where many lives will change, including, in ways I cannot predict but know I will cherish, my own. And as we reach the ground floor, and step out into the light of everyday life, I realize I have a better answer than any of the ones I’ve been giving.

I do it because everyone deserves to be heard.

I do it because everyone deserves to pontificate about milk, or sing along to Bette, or sit in the sun on the patio.

And I do it because everyone deserves to reach out for another hand. Even though nobody knows exactly what lies ahead, with hands intertwined we will walk there together, side by side, for as long and as far as we can.

Tags: compassion, death, Delaware, Family, Hospice, loss, love, volunteering

This entry was posted on Saturday, June 12th, 2010 at 8:59 am and is filed under Giving to others, Hospice, Rachel - General information. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.