Sunday, January 23, 2011

A Tale of Two Couples

My colleagues tell me all the time that they couldn't do what I do, and my friends ask me all the time if my work is depressing. Helping patients and families navigate the terrain of life-limiting illness is not for those who are comfortable being detached emotionally. The work is hard, but among its rewards is the privilege of having a front-row seat on so many aspects of the human condition. We see pain, but also joy. We see old wounds ripped open, but also love.

In the last few weeks I've been involved with two couples whose love for each other played out in different ways.

Hal was a hospice patient in his late sixties who'd come in from home because the pain from his stomach cancer was getting out of control. What we first thought would be a quick hospitalization turned into a stay of over a month. I'd met Hal before he'd gotten really sick. Predictably, he was the nicest guy you'd ever meet -- I say "predictably" because sometimes, it seems to me, the really nasty people never get sick. We got Hal's pain stabilized, but then he became delirious, and it took most of our tricks to keep him settled and to prevent him from hurting himself. There was no way he could go home or to another setting like a nursing home. His wife Jackie never left his side. And I mean that literally. Her universe, for more than a month, was Hal's hospital room. Friends and family brought clean clothes and food. She worked on her laptop when Hal was asleep and held his hand when he was awake. The staff learned to stay out of Hal's room when Jackie climbed into the bed to "spoon" with her husband.

From time to time I suggested that Jackie take a walk or go shopping or do something for a change of scene. She always smiled and always turned me down. She told me how important it was to her to be there for her husband and especially to be there when he died. And bit by bit, he became less and less awake, his pain and delirium controlled, and she was there for him right up to the end. Their love required her constant presence, and it never occurred to her to handle it any other way.

At about the same time, we admitted another hospice patient from home. Victor had led a rugged life. He was an alcoholic with cirrhosis and hepatitis. His liver and kidneys were failing rapidly. His partner Steve was twenty years his junior, and he was so beside himself with the though of losing Victor that he could barely come to visit. But we did talk about their relationship and about their love. They'd been together for fifteen years, and Steve was so young that this was clearly his first serious relationship. They had no real friends and no support system except each other. "It was always us against the world," Steve said.

Victor declined rapidly over a few days, his jaundice deepening and his kidneys finally quitting altogether. On the last day Steve came by in the morning. I watched as he held Victor's hand, kissed his forehead, and called him "sweetie" and "honey." Victor died later that day, but Steve was not there. It's our observation that sometimes patients seem to wait to be alone before they pass. Perhaps on some level Victor understood how hard his dying would be on Steve, and perhaps he chose to wait.

Being a hospice doctor gives me no claim to expertise on any aspect of the human condition, let alone love. But each day teaches me once again that love is gay and love is straight, that love is long and love is short, that love is hard and love is easy. Love may not make the world go 'round, but it is present in its infinite varieties among the dying and those who care for them.

1 comment:

  1. It is great to read provider's experiences. I too hear the comments from others that they couldn't do what I do. No one wants to hear about my job, so I have turned to just writing for me.