For the most part, Gail Sheehy’s new book Passages in Caregiving: Turning Chaos into Confidence is a survival manual about what to do and what not to do when caught in the maelstrom of a loved one’s critical illness. But it’s also a memoir of how an initial cancer diagnosis for Sheehy’s husband, the renowned magazine editor Clay Felker, kicked off 17 years of gradual physical and emotional decline.

Sheehy’s original Passages book was a national bestseller, and led to a series of books on life stages by the author. She was in town this week speaking and signing books.

She talked via phone before her appearances:

EYMAN: The problem with dying seems to be that nobody knows how to do it, and family members are hopelessly conflicted in dealing with it.

SHEEHY: There’s a lot of push and pull on the part of family members, especially the members who haven’t been on the spot. They parachute in at the last minute and want everything done. And people on the ground say, "Wait. Mom’s ready to go."

But you’re right, we don’t know how to die. It’s not just the concept of the inevitable, but the state of non-being. And the state of non-being, even if you’ve seen people die, is difficult to grasp and accept.

The revelation to me was that dying is hard work. It can take a long time. When the doctor said to me, ‘Your husband has entered the cycle of slow dying,’ I was stunned.

EYMAN: What were you least prepared for?

SHEEHY: The money and the time. The overwhelmingness of it. That there’s nothing out there to help middle-class people in long-term care. No matter how many care managers or elder care attorneys I talked to, there was never any answer. It was, "Well, this might work." But it didn’t.

EYMAN: I never thought of Clay Felker and Gail Sheehy as middle class.

SHEEHY: You become middle class pretty quickly when you’re paying for long-term care. It’s an abrupt shift. Even in modest places, to have a nurse stay overnight is $150 a day. In New York, it was $20,000 a month. How long do your savings last after that kind of assault? It’s breathtaking. And people can’t do it.

Poor people have access to Medicaid, not that it’s great shakes, or they have a large family and they hang together. And rich people have resources to hire people to take care. But the vast swath of middle-class people, even if they have some resources, find it very difficult.

EYMAN: Can the sick person derail an otherwise effective caregiver?

SHEEHY: Oh, yeah. Not intentionally. It happens all the time. It’s the roller coaster nature of long- term illness. You think things are set and Mom is safe. And then something else pops, and it throws off the whole regimen. Or they begin to decline in a way you can’t figure out, and you’re back into it.

And sometimes you feel guilty. Guilt is highly overrated. Caregivers shouldn’t feel guilt. They’re doing all that is humanly possible. The ones who bury their head in the sand and stay 1,000 miles away, that’s a different story.

But people who are on the job doing caregiving, it’s an enormously difficult and professional role for which we’re not trained. You’re always on call and on duty. Hypervigilance drains away the battery of the caregiver.

EYMAN: Does it matter what the specific problem is? Dementia, cancer, some other serious illness? Is the transaction different for different medical problems?

SHEEHY: Taking care of Alzheimer’s is the hardest of all. You’re losing the input of the person you’re pouring your heart and soul into. You have to make decisions without their help. And then when it progresses, the person is there but not there. It has to be excruciating.

I have some hopeful ideas in the book that I was happy to learn about – that with brain imaging they know the two areas that are least affected – creativity and emotions. So progressive doctors and facilities have been experimenting with using art, sculpting, painting, to reach Alzheimer’s patients by bypassing anything to do with language.

EYMAN: What would you do differently if you had the chance?

SHEEHY: I might have tried to get him qualified for Medicaid. But I’m not sure that would have helped, because I wouldn’t have put him into a nursing home. It’s very difficult to get home care under Medicaid.

I know I would have called for palliative care at home two years earlier. If I’d known, it would have made a difference, because it’s those last two years of emergency rooms, hospitalizations, re-hospitalizations, and subpar rehab places, and back to the hospital – it was a horrible revolving door.