Walking the Walk

Gail Sheehy has built a career investigating life processes in a library-shelf full of books, many of which include the word “Passages” in the title. Most recently, she turned her attention to yet another passage many of us find ourselves experiencing – the passage through the process of caregiving. I just finished reading Passages in Caregiving: Turning Chaos into Confidence, and, while my life hasn’t changed as a result, I did find some very helpful insights.

The book is more than extensive reportage. It’s also a memoir of Sheehy’s own experience caring for her husband, the founding editor of New York magazine, and a mentor to too many of the now-aging new journalists of the 1960s to list. Felker survived several bouts of cancer, in no small part due to Sheehy’s vigilance, and caregivers reading her accounts of trying to make sense of multiple, conflicting specialists’ orders will all shake their heads and mutter “amen, Gail,” at her righteous attempts to just get them all to listen to each other. For more than a decade, Sheehy managed medical care, supervised staff and even devised liquefied diets for Felker – whose throat cancer cost him the ability to swallow.  In the process, she developed a powerful metaphor – the labyrinth – to describe and understand the passages she and other caregivers experience as they aid loved ones through extended illness.

Labyrinths often are confused with mazes, but, though they bear some resemblance to each other from a bird’s-eye point of view, they serve completely different purposes. Mazes are constructed to confuse, with dead ends designed to confound even the cleverest attempts at escape. Labyrinths, on the other hand, provide their own guidance, with a single, snaking pathway leading into their centers and out, again. Some are used as part of spiritual practice, representing the pathway from birth to death and resurrection.

The switchbacks one follows in a labyrinth are called “turnings,” and Sheehy identifies eight in the caregiving process. Beginning with “shock and mobilization,” these stages go on to include “the new normal,” “boomerang,” “playing God,” “I can’t do this anymore!,” “coming back,” “the in-between stage,” and “the long good-bye.” Even the names of these eight turnings can evoke easy recognition among those who’ve experienced their challenges.

Now, the memoir Sheehy threads through her findings may leave you in awe of the different planet inhabited by caregivers who can afford monthly homecare bills that can hit $15,000 and family reunions aboard French river-barge cruises. But the pain and frustration she expresses rings true (and the balancing act she describes performing in a valiant attempt to meet editors’ deadlines and her husband’s care is a circus-worthy effort I live daily).

There’s also something about breaking down an overwhelming process into a series of smaller steps – even if one is destined to repeat one or more of those steps multiple times – that can give a body room to breathe. “I remember that,” I said to myself, reading the early “shock and mobilization” pages. “Oh that awful relapse last winter,” I recalled, reading about “boomerang.” And, “that’s where I think I am now,” I thought as I read the opening to the chapter on “coming home”:

“This is a critical turning point…. You know you have reached it  when and if you become aware that your loved one is not going to get well or return to you whole. He or she will become more and more dependent and needy…. Losses weigh heavily. But it is also a time for inner work on ourselves. it is here that caregivers who survive begin the effort of coming back to life.”

While Dad has been doing a bit better since mid-April, that improvement is slowly ebbing away. It’s hot here on Cape Cod now, with the muggy, humid air that Dad floats through like a fish in water, thanks to his 86 years in St. Louis. But fall, and then winter will be coming again, soon enough. I can see by the falling urine levels in his nightly urinals that his peeing is slowing. We see the kidney doctor next month, and I’m very curious to see the results of the blood tests that will precede that appointment. I think Dad is beginning to feel the frustration inherent in the realization that his gains of several months ago may be receding.

Having passed through Sheehy’s “I can’t do it anymore” phase, I’ve come to realize that very little would be accomplished by ramping back up to my previous sense of urgency as I see Dad beginning to pee steadily less. And, a month or so before picking up her book, I had come to the conclusion that I had to begin envisioning, and working toward, a life after Dad. I forced myself to drive through a rainstorm to a journalism networking event in Boston – my first trip off-Cape in months. And, for the first time, I bought myself a non-resident season sticker to Nauset Beach, located in the town next door to mine. In previous years, I had parceled out visits to this little piece of summertime paradise one $15 parking fee at a time. Since buying the permit, I’ve been spending four or five hours at a time, several days a week, swimming, reading and just simply zoning out. The dream of such days is one of the reasons I moved out here, and I think it’s important to begin making that dream come true even while Dad is still with me.

Sheey’s book may be out of financial reach for many caregivers (it retails hardcover for $27.99, but you can get it on Amazon for $17.32), but you might want to ask your library to hold it for you once they have it available. She offers some strategies for dealing with each of her eight phases, but many of those lessons you already may have heard elsewhere. The biggest value to me were, simply, the “I’ve been there” moments I encountered as I read the stories of Sheehy and all the other caregivers she interviewed. Just knowing that a publishing house the size of HarperCollins recognized a market large enough for a book such as this has helped reinforce the realization I’ve gained since starting this blog – I am not alone, the readers who’ve shared their stories with me are not alone, and we all gain strength through the knowledge that our respective stories have power to help us all in our paths into, through and out of our own personal labyrinths.

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