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One caregiver’s rite of passage

Gail Sheehy’s new book explores challenges of caring for a loved one

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Gail Sheehy spent 17 years as a caregiver, shepherding her husband, Clay Felker, through four bouts of cancer. When Felker, founder of New York magazine, died two years ago, Sheehy traveled the country, interviewing caregivers. She weaves their stories and hers in a new book, "Passages in Caregiving: Turning Chaos into Confidence" (William Morrow, $27.99), a rich source of resources and practical advice. (See gailsheehy.com for more information.) Here is an edited version of our conversation.

Q: The heart of your story revolves around intense emotions: anger, fear, guilt, anxiety. Was it hard to write about that?

A: Writing has always been the way I understand what I'm living. And I really didn't feel a lot of guilt because I was there for my husband through a very long haul.

Q: You describe caregiving as a labyrinth. How did you choose that image?

A: At a retreat for family caregivers in Oregon, I found myself walking a labyrinth. You move along a straight path, and suddenly there's an abrupt twist. You go on, and then there's another sudden turn. Then it seems like you're going backward. You think, I'm never going to get out of here.

It resonated with what I had heard caregivers describe. Their stories weren't linear; they were circular.

Q: The center of the labyrinth has a special meaning. Can you describe that?

A: It's the point where you realize your loved one isn't going to go back to the independent person he or she once was. You recognize you're on a different path, and if you don't begin to plan your own comeback, you may lose yourself.

Q: That happened to you, didn't it?

A: Yes. I was in danger toward the latter part of my husband's illness of losing myself. Actually, what happened was, I lost my power of concentration. I think that happens to a lot of caregivers. You have to plug the holes in so many places. In the last year of Clay's illness, it got to the point where I was afraid I couldn't write anymore. That was when a doctor ordered me to go away for a week.

Q: You write very movingly of asking yourself, "Can I really do this?" What decided you in favor of hanging in there?

A: It was not by putting the pros and cons on either side of a yellow pad. It was just my deepest instinct to stay and see it through.

I've asked myself many times since, would I do the same thing, and there's no question in my mind that I would do it tomorrow. Spiritually, it was the only path.

Q: It sounds like your husband was an incredible fighter. Can you talk about the journey you saw him go through at the end?

A: Both of us had our struggles with letting go. Clay wasn't religious so he had no idea where he was going. Of course, I didn't either. But at least I had some faith. That became a real issue for us. Because I wanted him to have a spiritual pathway, but I couldn't give it to him.

I think he didn't feel entirely at ease with what he had done with his life. Even with all the people whose careers he had fostered, he didn't feel he had given as much as he could or that he deserved their love. Which was so divorced from reality. Finally, he was able to acknowledge that.

Q: What was hardest for you?

A: I would go to sleep thinking, "I just don't know if I can do this." And then I'd wake up in the morning and rush into the next room and he would be peacefully sleeping and I would say, "But I still have him." That was the seesaw, every day.

The labyrinth of caregiving

Here are the eight twist-and-turn stages of caregiving, from Gail Sheehy's book:

Shock and mobilization: The crisis hits. Your spouse is diagnosed with cancer or your dad has a heart attack. You spring into action, fueled by adrenaline. Emotions run rampant.

The new normal: You realize you have a new role: family caregiver. But you adjust and regain a sense of balance. It's time to try new activities and enjoy yourself.

Boomerang: Another setback occurs. The original illness recurs or complications from treatment ensue. It's time to call a family meeting and find a doctor who will serve as your "medical quarterback."

Playing God. You've seized control. You believe you're the only one who understands what your loved one needs. The problem: No one can control disease or aging. When things take a turn for the worse, you feel it's your fault.

I can't do this anymore: You burn out. It's time to call for help. If you haven't already done so, get other family, friends and neighbors involved. Consider hiring a geriatric care manager or home health aides.

Coming back: You realize your loved one is not going to recover. Sadness and reflection follow. It's time to begin letting go while beginning to think of preparing for a new life.

The in-between stage: Your loved one isn't sick enough to be in the hospital, but caring for him or her at home is a challenge. This stage can last for months or years. There is almost no support available.

The long goodbye: It's time to talk about your loved one's end-of-life goals. What kind of medical care does he or she want? What kind of spiritual contact? What kind of experiences will give life meaning at this point? Let your loved one be in charge.

Distributed by McClatchy-Tribune Information Services.