December 1st, 2013
09:37 AM ET
Opinion by Kerry Egan, special to CNN
(CNN)– I got pulled over on my way to work recently. I was late and I was speeding, but when the officer saw the hospice ID around my neck, with the word "chaplain" all in capital letters, she gave me just a warning.
"You're an angel," she said. "Anybody who takes care of the dying must be an angel."
Because I'm a hospice chaplain, I hear that pretty frequently. I can guarantee you I'm not an angel. I'm a flawed and struggling human, and I deserved that ticket. I also don't take care of the dying, not really.
Because I have many patients, I usually only get to visit each patient twice a month, maybe once a week. In rare cases, I'll visit daily, but only for an hour or so. It's the dying person's family that truly takes care of him or her.
While hospice aides, nurses, social workers, and chaplains go into the homes of patients to offer support, education, and help, they cannot be there 24 hours a day, and they don't do the bulk of the caregiving.
More than 65 million Americans are caregivers for dying, sick, and disabled family members, according to the National Alliance for Caregiving, and about 1.6 million people are cared for by hospice programs each year.
While I always think it's nice that people call hospice workers like me “angels,” in some ways that lessens what caring for the dying actually means. I've seen what that caregiving work is like when I've been in patients' homes.
Let's be truly honest here - it can be exhausting, heartbreaking, and bone-crushing, especially if the disease process lasts for years.
I've watched those hospice families spoon food into mouths, and clean it up when it's spit out. I've seen them hold cups of water to flaking, yellow lips.
I've watched them turn their mothers or husbands in bed, the patients' heavy flesh rolling through their exertions and sweat. I've sat with them when they come out of the bedroom, after having cleaned the diarrhea off their fathers' or wives' backs.
I've seen them stooped over, back in a spasm from having lifted someone too heavy to lift alone.
To be the caregiver to someone who is dying is probably the most difficult work in the world.
But if we believe that the work we are called to do on this earth is to give food to the hungry, drink to the thirsty, clothe the naked, and visit the sick and imprisoned, then the families who care for the chronically ill and dying have done that with an intensity - an all-encompassing, daily, hourly, by-the-minute intensity - that is like nothing else.
For what else is the work of caring for the dying other than feeding, giving drink, bathing and clothing, and comforting the sick?
And if we believe that whatsoever we do, for even the least of people, we do for God, then the work that caregivers do is the most sacred work. More so, I think, than any missionary in a far-off place, more than a preacher in a pulpit, more than a theologian in a library, and, I can tell you with absolute certainty, more than a hospice chaplain.
That it is holy work doesn't make it lovely, or easy.
Being a caregiver might be the hardest work in the world, but the world doesn't seem to know it. Families caring for their sick are not held up as heroes. They don't get out of speeding tickets because of their job title.
People say that those who work with the dying must be angels. I think they mean that they can't imagine that they could do such physically, emotionally, and spiritually demanding work.
They think it must take the strength of angels to do such work, knowing that it ends in grief. It really does seem almost superhuman sometimes.
Ultimately, the problem with calling caregivers angels is that it implies that they don't need help. If they don't need help, we don't have to step up and offer it.
A patient's husband once told me that the old friends of his wife, a woman who had been bed-bound for eight years, stop him in the grocery store and post office all the time. They squeeze his hands and murmur softly to tell him that they are praying for her and that they love her.
"That's a cop-out! They pray because it's easy!" he shouted as tears slid down his cheeks and his body shook with grief and anger and abandonment. "She doesn't need your prayers. She needs you to come visit her!"
Too often, the dying and their caregivers are left alone and isolated, forgotten by the world that goes on with its business. Sometimes love is action. Sometimes love is the diaper change, the crushed pills in applesauce, the sponge bath. Sometimes love is taking care of someone when we hate it all.
If you've been a caregiver, you may have regrets. You may think, "If only I had done it differently." "If only I had noticed sooner." "If only I had been more patient." You may have been tired, and you may have been resentful. You may have been angry. You may have lost your faith. You may have been relieved when your loved one died, and then felt terrible guilt over that relief.
I have heard these things dozens of times over.
But remember that you did this work, not with the strength of angels, not with the unending energy of the supernatural, but with the limitations and weakness of a human being.
Maybe that's why the instructions are so simple, really. We don't need to take expensive mission trips around the world. We don't need to plan for months. We don't need special training. That bed-bound patient and her husband didn't need angels. They needed people.
When I was driving home from college with my mother and very ill father, we got a flat tire as darkness fell in the mountains in Virginia.
Seemingly out of nowhere, an elderly man in a tow truck showed up and changed the tire, accepting no payment or thanks.
At the time I thought he must be an angel. I couldn't imagine, straight out of college at 22 years old, that any person could be so willing to help another, with no reward or benefit to himself. And, because I thought he was an angel, I didn't see what he was doing as the kind of thing I should or could do myself.
But now I know better.
The hospice families, who cared for and loved and then let go of the ones they loved, have taught me that the human heart can be as big as the ocean, and that the work that God calls us to - to take care of each other - happens every moment in every place. We do not need to be angels to do it.
Kerry Egan is a hospice chaplain in South Carolina and author of "Fumbling: A Pilgrimage Tale of Love, Grief, and Spiritual Renewal on the Camino de Santiago." The views expressed in this column belong to Egan.
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