The WVFC summer-long Special Focus on Caregiving continues with part two of a three-part interview with Gail Sheehy, author of the new book Passages in Caregiving: Turning Chaos into Confidence. Here, Gail talks about the caregiving journey and its toughest challenge.

Your book’s central metaphor is the labyrinth, which you use to visualize the caregiving process. How did you arrive at that metaphor, and why does it resonate for you?

I tried to fit the journey of the caregiver into my classic framework, which is adult developmental stages. But it didn’t fit at all. So I was wandering blindly in composing the architecture of the book, just as I had been wandering blindly in doing my caregiving journey. And then one day, on a caregiving retreat, they suggested that we walk a labyrinth. And as I was walking, seeming to be on a nice, consistent path, suddenly a twist. And then moving along again, another sudden twist and turn. And I thought, “This is just like caregiving. This feels exactly like what I’m living through.”

And as I interviewed and met so many other caregivers over the last few years, it resonated with them as well. It became a very powerful metaphor for me, because there is a spiritual path that the labyrinth lays out. There’s a chapter in the book called ‘The Inner Pilgrimage.’ That’s what I thought of the labyrinth as being—an inner pilgrimage. And it has been a spiritual path for people to walk, for years before Christ. A very long time.

So I came up with the concept of turnings. Because we go through turnings on this circular path, and we come back to the same turnings, but we know them better each time we come back to them. The other powerful part of the metaphor is that you do get to the center. The center of the labyrinth to me is whether or not your loved one is going to come back. If the answer is no, then at the center of the labyrinth is the beginning of acceptance. And once you begin acceptance—if that’s the situation—you have to prepare a different path for yourself to come back. You’re not on the same path as your loved one. And that’s the most difficult and painful part of the path, but the most essential part.

In the book, you outline eight stages in the caregiving process, or “turnings” in the labyrinth: Shock and Mobilization, The New Normal, The Boomerang, Playing God, ‘I Can’t Do This Anymore,’ Coming Back, The In-Between Stage, and The Long Goodbye. Are you saying that Coming Back is the most difficult stage?

Yes, it’s the hardest one. And many people don’t get there. They stop at that point. I remember one man who’d been taking care of his wife with MS for ten years, changed his career so that he could be at home to take care of her, and she was just progressively becoming more and more immobilized. He finally found aides to help, so he had one day on the weekend free. And he got out of the house, got in his car, sat there—and couldn’t remember what he used to like to do. Where he would go.

So that’s the greatest danger. The reason it’s hard is because—particularly if you’re the sole caregiver—every waking and many of your sleeping hours begin to be tied to the idea of protecting or saving the person you’re taking care of. And you have to come to terms with the idea that you are not in control, you cannot reverse the disease process, and your loved one may not come back. You have to face that and digest that. That is when you need to make a commitment to prepare a path of comeback for yourself.

There seems to be a strong spiritual dimension to the caregiving journey as you’ve defined it. Could you talk about that?

This became a very important absence in my life. And this is something that my friend Dr. Pat [Allen] illuminated for me, when I hit my lowest point—where I just couldn’t get out of the spiral of self-pity, I couldn’t stop my heart racing, I woke up in morning as if I had just run a half mile. My financial situation was dire—the IRS was about to foreclose on my house. And Pat diagnosed, as she does, outside of her medical expertise, that I was exercising religiously but that I was out of spiritual conditioning. I hadn’t been paying attention to my faith.

And so she suggested that I try a 12-step program. They are faith-based programs, and they all have that in common, whatever the entering symptom might be. And I did that, and I found the emphasis on spiritual conditioning—on strengthening one’s relationship with a higher power and learning how to turn it over. Learning how, for me in particular, learning how to accept that I’m not God, I’m not in control of this process, and every day I have to begin with my gratitude list, and ask God for help and insights and inspirations, turn it over and go on with the day.

I think that simple recipe is a recipe for survival. And then there are many physical actions you can take to accelerate that. I found meditation essential. I’ve been trying to do it twice a day, even if for just ten minutes. It’s replenishing doing it a second time a day. I’ve learned mindfulness meditation, a deeper kind of meditation. When you’re a caregiver, you’re always on duty—something might go wrong, what didn’t you remember to do today. Yoga became very important as another encouragement to deep breathing and getting out of the hypervigilance.

Next: Practical suggestions about caregiving and lending support to caregivers.