Soul of a Caregiver

When you work closely with people who are very ill, often people nearing the end of life, you will sometimes see the human spirit at its most amazing. Someone facing the ultimate questions about her life can rise to levels of spiritual and physical strength that are hard to believe, and inspiring beyond belief.

Sometimes, though, the most amazing person in the room is not the person with cancer who is approaching death. It’s the person taking care of the woman or man who is dying.

I started making visits with Renee in mid-February of this year. She was mostly staying in a hospital bed in the living room of her small second-floor apartment at that point, occasionally getting up with help to use the commode. She was vocal, even raucous, and I liked her right away. During her summary of how she was doing that day, she mentioned that her right arm had a lot of metal in it – rods and pins to repair bad breaks. I asked what had happened, and she looked at me pointedly for a couple of seconds and said: “Marriage.” She told me just a few details of what had been, at times, a difficult life, including more than one abusive partner. “And now this,” I said, meaning her cancer.

“This?” she replied. “This is easy! Dying is easy. Living is hard.”

Only a few yards away, in the kitchen, her close friend of about 40 years was working away at whatever needed doing. For Suzanne, Renee’s dying was not easy.

She had come from her home in Florida to care for Renee for what was supposed to be maybe three weeks. Renee was not expected to live longer than that. As it turned out, except for two one-night breaks Suzanne never left until Renee died more than seven weeks later.

Suzanne is 73 years old; Renee was 69. Suzanne often had help during the days and evenings, but she did much of the personal care herself, and was alone with her friend at night. The closer Renee got to the end of her life, the heavier the demands were on Suzanne, physically and emotionally. Feeding her, keeping track of and administering her medications, shopping, organizing helpers, answering Renee’s frequent and often frantic calls during the night. Being the primary – really the only – go-between with doctors and nurses. She desperately wanted to get away, to return to her husband and rest, and I think she felt guilty about wanting that. But she saw no way to make that escape that wouldn’t force her friend to leave home for a hospital or nursing home. “The only thing she wanted,” Suzanne told me in a phone call recently, “was to die at home with her cats.”

So she stayed. She slept on a blowup bed. She watched her friend rally for a little while thanks to medication adjustments and better nutrition, and then begin a precipitous decline.

Hard as it was, every interaction I saw between the two of them was kind, imbued with their long history of love and familiarity. Suzanne was determined that Renee would die a comfortable death.

One day I texted her to see about coming by the following day to see Renee. “I’m not sure,” she replied, “since she is being moved to a respite care. Her caregiver is hanging on by a thread.”

Several hours later came another message: “Renee is definitely not being moved tomorrow. We’ll look forward to seeing you mid-afternoon.”

When I showed up, things had shifted. Renee had declined sharply and was not entirely awake. I asked Suzanne about the plan to move her. She looked horrified at the idea. “I’m not going to move her now,” she said.

It might have been that evening that Suzanne was sitting in a chair near Renee’s bed watching her sleep. “I looked at her and I said, ‘Toots, if you want to die at home, you have to start working on it. I can’t handle this much longer.’”

Renee died a couple of days later. Within hours, Suzanne was on the road, headed home toward the husband she’d been worrying about for weeks. “I’m sorry about the slow response to your call,” she wrote me soon after. (It was the next day; hardly a slow response.) “I’ve been really slow bouncing back mentally and physically. Twenty years younger would be so helpful!!”

Several days later, she wrote to me again, capturing in her note what I like to think is the heart of the work that Hand to Heart does.

“Dear Steve: It feels impossible to find the right words to describe what your presence did for Renee and for me as her primary caregiver during those last weeks of her life. I know we both found tremendous peace whenever you were there. Renee was so skeptical about you to begin with since she had trust issues with men, but that lasted for about a minute once she met you. You won her trust quickly and never failed to get a wonderful response from her when she saw your face. Even as she was slipping away from us, you were helping her with your soothing, gentle administrations. I will always remember you trying to remove the knots in my shoulders while reciting Beannacht and telling me about John O’Donohue. It and you lifted me up when I thought nothing could. Thank you so much from both of us.”

John O’Donohue was an Irish poet and philosopher, and author of many books worth reading. In one of them – Anam Cara: A Book of Celtic Wisdom – he wrote: “All you can ever achieve is a sense of your soul. You gain little glimpses of its light, colors, and contours. You feel the inspiration of its possibilities and the wonder of its mysteries.”

People who do what Suzanne did over the last weeks of her dear friend’s life must, I hope, glimpse their own souls, and be inspired.