Confessions of Hospice Spouse - circa 2000

I am a hospice spouse. It sounds like some type of small mammal, doesn't it? But, in fact, I am a large mammal. My wife is a hospice director.

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I have a theory that our house is filled with friendly ghosts. Over the years, my wife has met so many people who are now dead that I figure some of them hang around and visit us. I don't know if they protect us, but it is possible. Despite my protests, my wife continues to visit public housing projects in rough neighborhoods, at night, alone. Something is protecting her . God? Casper? Both?

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Like the doctor's spouse, I have learned a lot about can¬cer- it's bad, folks; death-not so scary; dying-it should not be bad, but it can be; pain-avoidable; durable power of attorney-we have one.

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I know many, many hospice stories, but I never tell them. Not only because of confidentiality, which I respect, but also because none of my friends wants to hear them. I used to tell people that my wife was in hospice, but I got the message that, young or old, everyone thinks hospice is great-as a concept. They don't want the icky stuff; they don't want to hear anything that suggests we are all going to croak.

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I am in the computer field, so there is often a computer or two in the back seat of our car. One day, I pulled into the parking lot outside the hospice where my wife worked. I just wanted to say hi to her. But snow covered the lot, so I parked illegally. I hurried off, without locking up. As I got inside the door, I met my wife. "I have to hurry," I said. "I left a terminal in the car." Every head in the place snapped up.

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On another occasion, I was working on a database with some hospice folks to help them keep some program statistics. Naively, I asked: "What types of outcomes should we code for patients?" A kindly nurse explained that all would be dead, "except for the miracles," that is.
"Oh," I said .

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Live today, my wife says, and she has many, many stories to support her philosophy. Mostly, they are about people who waited all their lives to have fun, but get cancer instead. My wife does have a point. I try to stop to smell the flowers, but mostly I forget and rush on.

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Families who have a member working in hospice know well a cycle of anger and guilt which should have some type of German name like the Grendl-Angst Syndrome. Usually, it occurs when you're really hungry-dying, even-but you have to wait for dinner because your dear one has been delayed by duty. First, you are annoyed that the hospice creature is late. How can she do this to me! We agreed that there is a time for work, and a time for dinner! Outrage! Growl! Then, Phase Two of the cycle kicks in. The creature arrives, full of explanations. These are among the best:

Just as I was leaving, the patient died, and the family needed to talk."
"I was on my way out. Really. But the son who had flown fifty-three hours from Siam wanted to talk to me. What could I say?"
"Everyone was crying. What could I do?"
"I tried to reach Doctor FritzI all day, and he suddenly was in my door wanting to talk." .
And, my all-time favorite: "The patient needed to talk."


I worry that it is probably pretty selfish of me to full prey to the cycle, but then I think of something else. I believe there are things like Virtue Points, a system based on good deeds and administered, perhaps, by St.Peter. Like those airline mileage certificates, they can be transferred among relatives. I explain to friends that Sarah, my wife, has amassed enough Virtue Points to meet the needs of all of our family.
Even me. -