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An Interview with Gail Sheehy

GB: One other thing I find very exciting about this kind of partnering with your loved ones care team is that it makes your loved one stand out.

GS: I think it is amazing that you are saying we want to be part of the team. I think a huge part of successful treatment is feeling that the caregiver, patient, and health professional are working together. We will help, we will do research, we will work with you, but we want you to work with us as a collaborative team.

GB: And you know the truth is that the good health professionals, who are swamped by the system but really care, very much want your help. You are the one who lives with their patient 24 hours a day. They want to know what changes you see in your loved one’s situation. They want your interest and involvement.

GS: Right. And if they do not, you have to move on.

GB: I really like your use of the phrase “labyrinth of caregiving” in the book. I think it is a very illuminating way to describe the caregiving experience. Please walk me through that concept.

GS: Like everyone else, I felt like I was just in chaos; there was no structure to what we were going through. And then I was on a caregiver retreat in a church and I began walking a labyrinth that was inscribed on the floor. It felt very relaxing, serene and secure because you are walking a path that is laid out for you; then suddenly, there is a twist and you are going in reverse. You go along for a little while and then there is another twist, another sharp turn. I thought, wow, this is just like what I am going through as a caregiver.

As I proceeded, I saw that you have to have faith and you have to have patience, but this is a path. There is a way into it and there is a way out of it, if you just stay on the path and have faith. When I got to the center with a great sense of relief, I began to think that this must be the place where you know that your loved one is going to come back, or is going to become more and more needy and eventually leave you.

I came to understand that is the point at which you, the caregiver, have to begin preparing your own way back. You are on a different path than they are. Your mom, your dad, or maybe your spouse is on a path that ends with their leaving this world. You are on a path that has to bring you back into the world. That is a dual path and it is quite hard to think about, but it is nothing to feel guilty about. The greatest tragedy is if you lose two for one; when the caregiver goes down with the person they are caring for, and that happens much too often.