Up, Down and Sideways: Talking With Novelist Brian Morton About Navigating Tough Caregiver Challenges

By Ellen Rand   

The late Rosalynn Carter once said that there are four kinds of people: those who have been caregivers, those who are caregivers now, those who will be caregivers in the future, and those who will need caregiving. That insight from a former First Lady, coupled with May being Older Americans Month, prompted The Bright Side Family and Age Friendly Teaneck to present a discussion on “Caregiving: A Labor of Love” at the Teaneck Public Library on May 26.

The evening featured a conversation between Teaneck native, novelist and Sarah Lawrence creative writing professor Brian Morton, and myself. Brian had written “Tasha: A Son’s Memoir” several years ago, about the last and very difficult years of his mother Tasha Morton, who as a former teacher and long-time Board of Education member was very well known in Teaneck.

Brian’s book is uncompromisingly honest, heartbreaking, often wry and funny, and I would heartily recommend it. As for me, I’m a member of the Advisory Board of Age Friendly Teaneck; had been a nine-year hospice volunteer with Holy Name Medical Center; and wrote a book, “Last Comforts: Notes from the Forefront of Late Life Care.”

Our wide-ranging discussion covered the many challenges of caring for a parent with a serious illness; the unexpected moments of humor, heartbreak and poignancy; the broader issues of how ill-equipped our culture is to help ailing people and to support their loved ones; and some practical guidance and lessons learned about our various experiences.

What made the evening even more special was how audience members, many of whom had known Tasha, began asking questions and offering their own experiences and challenges as caregivers for parents or spouses. Perhaps not surprisingly, much of the discussion revolved around the physical, emotional and psychological issues of caring for loved ones with dementia.

We started our conversation at the beginning: how Brian came to write this book several years after Tasha had died. He worked on it fairly quickly, during the pandemic, driven to create a fuller portrait of Tasha than he had done when he created a character, based on Tasha, in a satirical way in The Dylanist, his first novel, published in 1991. (That had prompted her to call Brian and leave a message referring to herself as his “former mother.”) Brian, who had called the several years of Tasha’s physical and mental decline a searing experience, drew on still-fresh memories of difficult conversations, frequent crises and nightmarish episodes with in-home health aides and later, aides in long-term care.

We talked about how critical it is for caregivers to have support. Brian was fortunate to have his wife and his late sister “doing the heavy lifting,” as he said, with Tasha’s care, as well as providing emotional support for him. I could relate to that, because when my mother was in the throes of the worst aspects of living with a brain tumor, I had been fortunate, too, that my husband, son and stepdaughter were there for me. But I was also fortunate to have had support from my mother's hospice team; as well as the unusual good luck in finding a person to live with my mother in her condo on Long Island during her 2 ½ year decline.

During Tasha’s decline, Brian found that there was a stunning lack of resources available for caregivers and railed against our culture, whose motto could be summed up as “you’re on your own.” That has not improved much since “Tasha: A Son’s Memoir” was published. Finding personal care and home health assistance is a continuing challenge. There is insufficient training, or real career paths, for people who work in what’s referred to as direct care. Immigrants who comprise a sizable percentage of the direct care workforce, are under threat. And people living with serious illnesses are often discharged from hospital care for recovery at home, requiring medical and nursing skills that caregivers are typically not prepared to provide (although we learn out of necessity how to train to provide them).

It all adds up to caregivers feeling alone, powerless, exhausted and helpless -- especially in mid-crisis. We question ourselves – are we doing the right thing? Should we have done something different? Am I a bad person if I lose my patience or need a break myself? How do we balance our loved ones’ need for independence versus providing a clean and safe environment for them? As Brian has said, there are no right answers.

That evening, The Bright Side Family and Age Friendly Teaneck provided resource information available in the county and state. Below is some additional information for those who may be members of one of Rosalyn Carter’s caregiver groups.

The Bright Side Family and Age Friendly Teaneck are grateful to Brian Morton for taking the time to participate in this conversation, and for his ever-thoughtful observations and connection with the audience. We are grateful to the Teaneck Public Library, too, for hosting this event.