Gail Sheehy, the author of 15 books, including Passages and other works on life's seminal stages, spent 2009 as AARP's Ambassador of Caregiving. She is the author of Passages in Caregiving: Turning Chaos into Confidence (HarperCollins, 2010). Sheehy visited Kansas City June 23 through a Rainy Day Books author event. Her book is available widely.
Ms. Sheehy shared some of her caregiving wisdom with The Best Times from her New York City home.

Best Times: Throughout your new book, you use a graphic of a labyrinth. The labyrinth seems to have no clear way out—but if you hold to the path and go where it takes you, you'll get to the center and home again. It's a hopeful image.

Gail Sheehy: That's the way it seemed to me. A labyrinth is not the same as a maze, but it does have abrupt twists and turns, just like caregiving. It will send you back where you have been before, but you know the path better the second time around.

In caregiving, that means you are not as likely to accept the first pronouncement by a doctor, you are more likely to look for other consults and even complementary therapies, to be more of an advocate, and to present yourself as more of a professional.

Another similarity is that sometimes in life we've been aiming toward the gateway to a second adulthood, when we are free at last from the precarious balancing act between parenting and pursuing a career—and suddenly we're back to balancing again, only now it's even more uncertain because we don't know how long we'll be playing this caregiving role.

BT: Your husband, Clay Felker, died at age 82 after 17 years in which you were his primary caregiver.

GS: I wasn't actually caregiving all that time, because we kept beating cancer. Four different times we had long reprieves between bouts. In the process we had changed our lives, and it paid off enormously in renewed enthusiasm for life—and, in the first instance, a lymphoma that never came back.

We used his life-threatening situation to upend our lives and take a risk, tearing up our very densely connected world in New York and starting over again in Northern California. We were setting up housekeeping all over again, starting in a graduate-student apartment, so we felt like newlyweds! It was an exhilarating time, welcoming our friends and children to California, traveling in a different part of the country, getting into an entirely different lifestyle.

As a caregiver, I was commuting between these two totally different worlds—the outdoor, healthy, noble, bicycle-everywhere Northern California life and the much more competitive and noisy, thrilling, edgy Manhattan life.

BT: You state that you want to help readers be aware of some universal patterns in caregiving. One of those patterns is thinking that we have no authority because we're "just family." How can family members give themselves credibility?

GS: The first thing is to take a notebook or tape recorder into the early interviews with doctors, and think of them as interviews. In other words, "I am here to be a partner with you, Dr. X, and I want to record what you say so I can transcribe it afterward and be on the same page with you and be able to ask only pertinent follow-up questions. And I would like to ask you three questions." (These are the questions to determine whether this doctor might be your "medical quarterback.") They are:

Will you help us decide on a care plan between conflicting opinions of different doctors? Will you help us assemble a care team? And will you help us address pain and other side effects of treatment?

If you and your family member see yourselves as a team, and the family member sort of deputizes you to be the spokesperson for your team, and you ask the doctor to collaborate with you on moving ahead, you can get a sense of whether this is the right doctor.

When we found doctors like that, we worked with them—and it was enormously successful because we felt completely confident and trusting in the doctor. And the doctor felt that we were doing as much as we could on our end, and that we were going to be informed and able to give feedback to help the doctor get a better result.

BT: Another common pattern is passively accepting first opinions from medical experts. What do you say to someone who lives in a smaller community, is close to the physicians in town, and is reluctant to damage personal relationships by seeking a second opinion?

GS: A good question. I would suggest turning to online consul-tations. Certain Internet sites can connect you to top specialists for a serious diagnosis or just a routine medical consult. One of them is My.ClevelandClinic.org/eClevelandClinic/myconsult/default.aspx. Another site is MDLiveCare.com, which connects people with health practitioners like therapists, dermatologists, and nutritionists.

BT: Too often, caregivers believe they don't deserve to reach out for help because, after all, look at what the patient is going through...

GS: Yes. The most common scenario is that the daughter or wife who lives closest or is unmarried or has no children is the one who takes primary responsibility, and the rest of the family gets used to offloading everything on her. And the more devotedly she does the job, the more likely she is to deteriorate in her own health. Then there are two people to take care of.

You have to put your own health first. That seems selfish and non-intuitive, but think about the rule they give you on an airline: When the oxygen mask drops, put your own on first and then put one on the child.

The most common scenario is to take your family member to every possible test but forget about going for your own annual exams or for checkups when you feel your heart racing or you're depressed or are losing weight. Or you have minor illnesses all the time, suggesting that your immune system is compro-mised. The best solution is to get one of the doctors on your family member's team to schedule an exam, checkup, or test for you at the same time or in the same medical center as when you take your family member. If you're scheduling a CT scan for your mom or dad, you can say, "At the same time, I need to have a Doppler test for my carotid artery."

BT: You say that it's not unusual for caregivers to die sooner than the person being cared for.

GS: Right. Things get to such a dramatic point that with no warning, the caregiver is in danger of falling from a heart attack on the way to taking a family member to the emergency room, or of having a stroke on the way to visiting a family member in the Alzheimer's group home. I think one of the most dangerous effects of caregiving is lack of good sleep. People so often say, "I'm exhausted but I can't sleep." That's because they're on hyper-vigilance all the time, and the longer you're on hyper-vigilance, the more the cortisol builds up and spews out around the clock, until it overrides the immune system. Then you really don't have any protection.

The hard thing to accept is that when people are really sick, the outside world begins to fade away and the brain becomes very interior-focused, minutely scanning all the organs and what's going on, and there's not much brain power left for recognizing how much the caregiver is putting into this struggle.

BT: I read a lot of material about caregiving, but I've never seen anyone so forcefully advise caregivers to remember that while their loved one is on a path toward death, they are on the path of life. Do guilt and self-sacrifice get in the way of that healthy attitude?

GS: As it becomes more and more obvious that your loved one is not going to get well, and is going to become more dependent and needy, and ultimately die, the natural inclination for a devoted caregiver is to pour on even more effort and to sacrifice her own life and pleasures even more. But if you think about it, when you're tightly connected to a flame that is gradually going out, you will eventually lose your self. You will be so intertwined with the person who is losing life that it becomes more and more difficult for you to come back.

I was lucky enough to be ordered by my husband's doctor to go away, to go out as a journalist on a presidential campaign. He said, "You are a writer; don't forget about yourself. Go back to work. It will be the healthier thing for you and for your husband." And it was.

Most people who are preparing to leave the world are very concerned about what's going to happen to the loved one who has been taking care of them. They want to know that you still have a self and a life and pleasures to go to, so they won't have to feel guilty about leaving you.

BT: You write that people who get really good at caregiving can slip into a "playing God" frame of mind without even realizing it.

GS: The irony is that the most devoted caregivers are the most at risk. You have probably saved your loved one from lesser and greater mistakes, perhaps even life-threatening disasters, in the hospital or the emergency room or by catching a prescription interaction or catching them before they fall. You gradually begin to believe that you are the only one who is saving this person day by day from disaster or death. I got there, too. That's a scary, ego-satisfying role. As long as everything is going well, you can enjoy it. But once something goes wrong, which is inevitable, and if you're "God," you'll believe it's your fault. And it's not.

None of us can control aging or disease. So you have to wean yourself off of believing that you are the one who stands between life and death for your loved one. The loved one will often validate that fantasy by saying, "My wife is the only one who knows what I need," or "My daughter is the only one who can really take care of me." It becomes an unhealthy codependent relationship.

BT: Siblings are inherent rivals, and their relationships are a big source of caregiving stress?

GS: Yes, so I say very strongly, Have the conversation with your siblings before the crisis comes. There are good ways to do that. One way is to say, "Let's talk about how we can keep Mom and Dad independent in their own homes as long as possible by creating a circle of care. Let's all share what we are best at, because everybody will have a different skill set."

If you start thinking and planning along those lines before a crisis comes, it's much less likely that one person will be looked upon as the sacrificial lamb by everybody else when the crisis does arise.

BT: You explored a hospice residence for your husband.

GS: We interviewed a hospice residence that was following a very rigid protocol: Once you come in here you will gradually be weaned off a feeding tube; you will not be going out again; you will be confined to a bed and eventually weaned off hydration.

That wasn't where my husband was. He was at what I call the "in-between stage," where people can spend months or years because they have chronic illnesses and cannot be cured or cared for in an acute-care hospital but are not ready for the six-month deadline that a doctor must sign off on for hospice.

I rejected the hospice house and brought my husband home, and only then learned about palliative care, which you can get from the time of a life-limiting illness diagnosis. We were fortunate to find a palliative care team that could work with us to take care of my husband at home—with a geriatrician, a nurse practitioner, a social worker, and a nondenomi-national chaplain, which was later added with home hospice. That gave us more control, based on the values and goals of my husband for his stage in life, as opposed to going into a hospital, where you submit to their goal: no matter how uncomfortable and repetitive the tests may be, they will do everything because they're going for a cure. But in fact you can't be cured.

BT: You talk about the "full circle of caregiving." How can those of us who aren't yet in a caretaking role begin to build that circle?

GS: You can start sharing care with friends and co-workers before it becomes a crisis in your own family. It's the old-fashioned idea of community; it takes a village.

With long-distance parents, the only way to know how things are really going with them—because they will cover up the evidence of need or memory loss or physical weakening or driving disasters—is to go live with them for at least a few days. Introduce yourself to neighbors, the mail carrier and the pharmacist who fills their prescriptions, and give them your contact information. Do your parents have friends they play bridge with or have coffee with, or spend time with at the Masons or the American Legion Hall? The more people you know who know your parents, the easier it will be for those people to call you if they see a danger signal or for you to call them if you just want to check up. That's a caregiving circle.

BT: You write: "The mind recognizes, on a soul level, that one is making a momentous transition. And during that transition, one has some choice about going sooner or later."

GS: There's considerable evidence that anniversaries, birthdays, special visits from a far-flung loved one, are often the inducement for somebody who is terminal to stay alive until that takes place. That certainly was the conclusion of my husband's doctors at Mount Sinai. When the mind makes a decision, the body can follow.

We need to pay close attention to the signals of the dying person. When my husband's feeding tube came out and I questioned him as to whether it was accidental, he said, "Oh, yes." Then he let the aide know that it wasn't accidental. The doctors said to me, "Don't keep asking him about that. A husband can't tell his wife that he's ready to leave her."