I didn’t seek a job in hospice, but that’s the job I was offered: half-time spiritual care coordinator in Livingston County. I had a lot of questions about the position: How would I feel about working with people who had no chance of recovery? Could a Jewish chaplain be accepted in one of the least diverse counties in the area? But I needed a job, so I said yes.
Hospice is a scary word. It crashes down like a portcullis, and people often don’t hear anything the doctor says afterwards. It feels like a death sentence. Of course, the true death sentence occurs the moment you are born. Hospice is just a way of choosing how you want to live at the end of life, until you die.
During my training at St. Joe’s in Ann Arbor, I would see people just once or, at most, a few times. I was a spiritual medic. Now I would become something more along the lines of a death doula, helping people make that final journey.
Though I hadn’t done hospice work, I knew its value. Visiting my mother in Oregon a few years ago, I thought that her dementia had progressed to the point that she might be ready for hospice. I raised the issue with my family. The response was, “I don’t think we’re ready for that yet.”
I told them that hospice has no downside, except for the word itself. Caregivers would come to the house; Mom would no longer have to shlep to the doctor’s office. They would also provide equipment and medication. “Let the doctor decide if she is eligible for hospice and go from there,” I urged.
Mom was in hospice the next week, and I got to hear the sweetest words: “You were right.” She died peacefully at home some months later; I was at her side when she drew her last breath.
—
Hospice isn’t a place so much as it is a service. We don’t have a freestanding building–these days, insurance changes make that type of care harder to find. We go to where patients live, be it at their home or nursing facility.
I have a great sense of curiosity when I arrive for that first visit. I have knocked on a lot of different doors in the past five years: grand lakeside homes, modest cottages, apartments, mobile homes (some fancier than others), and lots of nursing homes. At every door I wonder who I will meet, what I will see. Expectations and assumptions go out the window.
One of my most beloved patients met me at the door with an oxygen mask that flattened his face, only highlighting the fact that parts of his nose and ear had been removed due to cancer. As I got to know him and learned his story, I was stunned at what he had endured and how he could still perceive beauty and wonder. “I never get bored,” he told me.
“Even when you’re standing in line at the bank?” I asked.
“Even in line in the bank. I just look at people and make up stories about them.”
He had trouble forgiving himself for some bad things he had done in his life. We explored how God might evaluate his regret. I would have missed so much had I allowed his appearance to shape my view of him. A big question was whether or when to reveal that I am Jewish. I have an unusual name, and that is usually the big tip-off … or the opportunity, depending on how you look at it. Typically they will say “Ne-ha-ma, is that an ethnic name?” And I say, “Yes, it’s Hebrew. I am a Jewish chaplain.”
I continue, “I am proof that God has a sense of humor, because he sent this Jewish chaplain to work for a Catholic agency in Livingston County, where there are no Jews.” They laugh; it is always convenient to blame God.
Then I add, “But here’s the cool thing. I am named for my grandmother, and I would be named Nehama if I were an accountant. But the word itself means ‘consolation,’ so I guess I am doing what I am supposed to be doing.”
That usually seals the deal, but people still have trouble with my name. There was one patient I always saved for the end of the day because she was a smoker. (I figure that ingesting what you want is one of the perks of hospice, but the smell clung to me.) She struggled with Nehama. For a while she called me “Mahatma,” which I thought was pretty cool. But then she settled on “Hot Mama,” which was the best.
She was quite outspoken about many topics, and the fact that she let me visit every week was quite a compliment. When I received a note from her grandson thanking me for my visits it was addressed, “Dear Hot Mama.” That was a keeper.
When asked about my work, I say “I am a hospice chaplain.” That’s usually a conversation stopper. But then, after a pause, people will ask, “Isn’t that very depressing?”
I tell them that, in all honesty, it is often very sad, but I don’t find it depressing. Every day I get to witness incredible kindness. “You have no idea how much good there is in the world,” I tell them.
One of the most inspiring people I met would be astonished to know that he is one of my heroes. Before finding hospice, he alone cared for his father, a man who had abused him cruelly, both physically and emotionally. When his dad came on hospice he finally had support.
“How is it that you are taking care of your dad when he was so bad to you?” I asked him.
“Because it’s the right thing to do,” he answered.
We had long talks about what his father had missed out on with his children and how my hero had been loving and joyful with his own children.
There are moments of hilarity too. One day when I went to see one of my favorite ladies in the nursing home she greeted me with, “Look at that blouse. Quick, bar the door, I need that blouse.”
“And how would that look, Jane,*” I replied, “if the chaplain is running around shirtless?”
I used to go to Mass with her and sometimes stay for bingo afterwards.
Just down the hall from her was another one of my favorites. April was bedbound and the most beloved cranky person I’ve ever met. She was very well educated and enjoyed the fact that I could understand her vocabulary. I would refresh her ice water, adjust the blinds just so, and let the nurse know when she was in pain. I also brought her favorite Constant Comment tea.
When she suddenly took a turn for the worse, after being my friend for eight months, I went to see her. She wasn’t very responsive. I stroked her hair and said, “April, I will miss you.”
Suddenly her eyes opened. “Oh, are you going somewhere?”
I took a breath. “No,” I said, “but I think you are drifting away from me.”
“Yes, I am,” she said. And those were her last words to me.
—
There is a myth that hospice is a short bridge to death. Doctors determine eligibility based on their best guess that in the normal course of events this person will likely die within six months. But, as we know, everybody is different.
We had a patient who was with us for more than two years. She was bedbound, but her family took amazing care of her. Her Alzheimer’s was so advanced that she was officially designated a 7F on the dementia scale, the farthest one could go.
I sat with her daughter and son-in-law as they started chanting “7G! 7G!” She finally died when she was no longer able to swallow.
Others die within a week of hospice admission. I’m always sad when that happens, because it means we don’t have the time to develop the relationships that can really help families.
Being a chaplain is a lot different from being a mere visitor. I ask hard questions: “Are you afraid of dying?” “Are there things that you need to do before you die?” “Have you decided what you want for final arrangements?” “What concerns do you have about your family?”
I help conversations get going among family members. I educate. “How much longer do you think it will be?” a daughter may ask.
“I have been wrong so many times that I don’t like to guess,” I answer. “It won’t be two weeks.” And then I will try to redirect them into the present moment so they can focus on the time they do have together instead of worrying about an unpredictable future.
I can normalize situations. A son may feel guilt placing mom in a nursing home after promising that he wouldn’t. “You promised to provide the best care you could,” I tell him. “When your mom is in a nursing home you can be a son again and not a caregiver. Only you can be the son.”
Of course there is a lot of prayer and song. I have sung “What a Wonderful World” scores of times. I have learned “Amazing Grace” and “Precious Lord” thanks to my Elvis gospel CD. I had a long nursing home visit with a patient’s son and daughter-in-law, wherein they spoke of the patient’s life, his love of boating, and the stroke that left him on the floor of his house until his son found him.
I suggested that we pray together. We joined hands, and I prayed for the dad’s peace. When I finished he took a few more breaths and then died. The son said, “You opened the door for him with your prayer. I saw him open his eyes and just relax.”
Others prefer to die alone. A family may be sitting at the side of a loved one and then step outside for a cup of coffee or to stretch their legs, and in that brief interval the patient dies. Once a wife and I left her husband’s side to sit together in the living room. I had a hunch that he was one of those people who wouldn’t want to die in front of loved ones. Sure enough, when I went back to check on him he had stopped breathing. I don’t know how much control the dying have over the moment of their death, but there is something mysterious at play.
—
Death is sad. It should be sad. “How terrible would it be if you were not grieving?” I ask the family. But death needn’t be frightening. Hospice philosophy dictates comfort. If a patient wants to be pain free, we can make that happen. If they want to be more alert at the price of greater pain, we can do that too. Each death, like each birth, is unique and precious, individual. Terminal restlessness, something Tolstoy described in Anna Karenina; terminal congestion; the so-called death rattle–all normal. Sometimes I am stunned to realize how familiar I am with death.
Hospice work is its own world. I meet the most amazing people and then they die. But in that space before they die I establish friendships with patients and families. They have touched my soul. As I drive the now-familiar roads of Livingston County, past homes and neighborhoods where I have spent so much time, I silently thank God for the privilege of being present.
