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An Interview with Gail Sheehy

So, as I thought about it over the years that I was caregiving, I began to see that there were certain crisis points along the way that were quite commonplace. I came up with eight of them, or Turnings. They are not linear, and you come back to ones that you have been over before; but you know them differently because you have been there and you know how to handle them.

The first Turning is Shock and Mobilization. That is when the call comes in. It is out of the blue, you are not prepared, and your life seems to be turned upside down, but often you do not really see yourself as a caregiver. You are just trying to get through the day. Your mobilization is in speaking with the doctors, dealing with the treatments and the conflicting opinions you will hear from family members. Ultimately, you and the person you are caring for have to retreat and process all that you have learned, come to a decision yourselves, and then go from there.

When the immediate crisis is over, you settle into the second Turning—A New Normal. It just happens naturally. In time, you gradually get accustomed to the new normal and you know that you can deal with it. This may go on for months, years, or even many years.

But, then there is the third stage—Boomerang. Almost inevitably, there will be another crisis of some sort. This time, you know it better and you are a little smarter about how to galvanize and mobilize. It is very important at this point to have a family meeting. If you let other members of the family go on just depending on you as the primary caregiver, you are going to burn out. It is very important to arrange the family meeting in such a way that you are not the boss; that you have a neutral and professional intermediary so everybody can feel as though they have important contributions to make.

GB: Right, and this is where you learn to be the coach; to be able to say, “Okay, I have been here before; now I know what my informal network has to be.” You pretty much know how to manage to the point where you have gotten yourself to the next step in the caregiving phase.

GS: You, the primary caregiver, now need to graduate to care manager. Right? And you need to get used to thinking of yourself as a professional and presenting yourself that way to other health care professionals.

GB: Absolutely.

GS: The fourth Turning is called Playing God, which is when people who perform the caregiving role almost in isolation begin to think (I did too) that you and you alone are responsible for keeping this person alive. The person you are taking care of will often reinforce that by saying things such things as, “My daughter is the only one I really trust,” and this becomes a co-dependent relationship. The problem is that as long as things are going well and you are succeeding, your ego is stimulated by the idea of how important, how absolutely essential you are; you are playing God. And then, when something does not go well or the treatment backfires and you cannot catch up, well,if you are God, it is your fault. So, it is a no-win situation. Finally you have to get to the point where you say, if you are a believer, “There is a God, but I am not It.”