‘To Love What Is’: Alzheimer’s, Caregiving, and Marriage

“I’m not done loving him.”
These where the quiet words, simply spoken, by a remarkable woman I know in the tenth year of caring for her Alzheimer’s afflicted husband at home. Once gregarious and charming, he is now usually unable to recognize even his beloved wife. Yet, when others laud her decision to keep him at home as somehow selfless or charitable, she quickly corrects them. “It’s not selfless at all,” she says, “He is my husband and I am not done loving him.”
I don’t think I understood her words until tonight.
The Narrative Medicine Program at Columbia University hosts speakers and authors working at the interces of narrative and medicine for our monthly Narrative Medicine Rounds. This evening, I had the honor of introducing political activist, feminist, teacher, and award-winning writer Alix Kates Shulman, who has been hailed by the NY Times as “the voice that has for three decades provided a lyrical narrative of the changing position of women in American society.” Ms. Shulman is the award winning author of 12 books of fiction and nonfiction, and her debut novel, the million copy bestseller “Memoirs of an ExProm Queen” has been called “the first important novel to emerge from the Women’s Liberation Movement,” and it was reissued last year in a 35th anniversary edition as a “feminist classic.” Among her other work are the 1969 essay “A Marriage Disagreement” which suggested the rather radical proposal that a husband and wife divide their household and childrearing tasks evenly, and the 1999 memoir “A Good Enough Daughter” which is about caring for her elderly parents, including a mother who suffered from Alzheimer’s Disease. Tonight, she read from her lyrical new memoir, “To Love What Is: A Marriage Transformed”, which chronicles a love story of husband and wife as they face his traumatic brain injury and her transformation into caregiver.
After a fall from which he was injured but did not die, Shulman’s seventy-five year old husband spiraled into a condition not dissimilar to Alzheimer’s Disease. Although he could remember long term events, his short term memory had all but disappeared. This once articulate and gentle man experienced bursts of rage, flights of imagination mixed with clarity, and although in many ways he was still the same loving individual he had always been, Shulman found herself unable to leave him alone without a constant supervision due to fears for his safety. Her life was transformed, and so was her marriage.
As caregiving advocate Carol Levine has written, caregivers in this nation are 25 million strong and provide nearly $200 billion a year in unpaid labor. Levine describes how, as a graduate student in the 1950’s, she had faced academic committees that frankly told her they would not consider her for a fellowship because she might get married and pregnant. Despite decades of gender progress prompted by the feminist movement, when Levine soon found herself a caregiver to her severely disabled husband after he was injured in a car accident, she was back in world of gendered division of labor. In Levine’s words, “Not only are women the traditional caregivers, they are expected to do more of it, quietly and obediently, without special training. We are assumed to be hardwired for would dressing, feeding tube calibration and wheelchair manipulation..in the prosaic world of chronic illness, it is wives, daughters, sisters, aunts and female friends who constitute the bulk of the caregiving workforce.” (from "Night Shift," in Stories of Illness and Healing: Women Write Their Bodies, 2007)
Of course, in the world of caregiving, there is no fair division of labor, no gendered agreement which, like Shulman’s Marriage Contract, suggests that “wife strips beds, husband remakes them.” And Alix Kates Shulman’s remarkable memoir does recount the struggles, frustrations, and sheer loneliness of a caregiver in this position – in raw, honest, sometimes unflinching prose. But what it does in addition, and importantly, is to at the same time remind the reader of her motivation as a caregiver, her deeply committed, loving relationship with her husband.
Weaving together their past love story with their present one, the memoir describes an emergency heart surgery that her husband Scott required in a time before his brain injury. As he is being wheeled in for his operation, he takes hold of her hand and says, by way of potentially last words to her, “I want you to know one thing… that you were truly loved.” In the words of Ms. Shulman herself, “Someone who says a thing like that to you and is saying it truly, you would never abandon no matter what happened.”
Although Shulman very clearly asserts the rights of caregivers to make the their own decisions regarding caring for their loved ones at home or in a nursing home, for the last four years, she has chosen to care for her husband at home, in love. Her memoir is a chronicle of that changed love, the ability not to yearn for that which is not, but to embrace that which is.
“I’m not done loving him.”
Tonight, I’m beginning to understand.

Welcome

Historian Susan Reverby once describe herself as having been "dragged kicking and screaming into the 20th century." In some respects we feel as if this blog is an acknowledgement that narrative medicine has been "dragged" into the 21st century. While some of us are deeply rooted in narrative literature of the previous two centuries, and, it is true that just this past month we lead an amazing group of workshop participants in a close reading of "A Gentle Spirit," an amazingly complex and disturbing Dostoevsky story, we have found ourselves making forays into the world of blogging. Indeed, we have discovered that the blogger's voice, that the blogger's ability to explore, to respond, to connect and communicate adds enormously to our reach, and to our own growth. (Check out blogs by Maura Spiegel, Sayantani DasGupta and Marsha Hurst on the Literature, Arts and Medicine blog, and by Sayantani on Intent.com.)

In addition, the Narrative Medicine Program has now worked with hundreds of amazing clinicians, scholars, writers, students and others in workshops, at conferences, and in other educational settings, many of whom are developing programs, creating narratives, educating others in ways that they--and we--want to share. This blog is intended to grow this information network--loosely called the Narrative Medicine Society--and enable our work to be shared most productively. We hope new bloggers from the Program and the Society will join us in this effort.

Finally, it is fitting that we open this blog on the first day of a new era in the United States, an era that embraces the leadership of Barak Obama, who brings to the Presidency not a personal story that is both the classic American immigrant tale and the modern narrative of the embodied global person. And whose rhetoric and writing remind us that the power of giving voice to ideas and emotions can, indeed, change the world.