Essay Collection Sheds Light on the Many Facets of Caregiving

Joyce Remy, IlluminAge Communication Partners

While chasing their runaway dog across a Manhattan street, Abigail Thomas’ husband is struck by a car and sustains a severe head injury. Thomas is instantly transformed from wife to caregiver.

When her baby is four months old, Julia Glass is diagnosed with breast cancer and must switch roles by accepting the care of others.

Susan Lehman is often impatient with the changes dementia brings to her Radcliffe-graduate mother, once an assistant to Eleanor Roosevelt. But when her mother moves in with the family, Susan’s three young children bond with their lighthearted, candy-dispensing grandmother as a peer and co-conspirator.

An Uncertain Inheritance: Writers on Caring for Family Edited by Nell Casey William Morrow/ HarperCollins Publishers $24.95 _____________________

Personal memoir is a very popular publishing trend these days, as readers realize that real-life events rival fiction when it comes to drama and a compelling story. One form of memoir—collections of autobiographical essays about a shared life experience—occupies more and more shelf space in bookstores. Recent offerings focus on topics as diverse as depression, mountaineering accidents, infertility, growing up on an Indian reservation and of course, writing itself.

And now a new offering, An Uncertain Inheritance: Writers on Caring for Family, demonstrates that the potent emotional mix that comes with caring for a loved one matches any other human experience for challenges and joys. Readers who find family dramas compelling will quickly see that the act of caregiving tends to magnify the dynamics of family relationships.

In this collection of essays edited by Nell Casey, 19 writers describe their individual caregiving experiences. Multiple caregiving roles are represented: children providing care for parents who have terminal illnesses or dementia…spouses of partners with catastrophic illness or injury…parents of children with lifetime disabilities…and care receivers themselves.

Some of the stories are wrenching. Scot Sea’s account of life with his autistic teenage daughter brings into the spotlight the failure of our nation’s safety net for parents of children with disabilities.  Other memoirs are full of bittersweet irony where devotion and sadness meet. The highs and lows of caregiving are represented: Eleanor Cooney’s mother’s personality-robbing descent into Alzheimer’s tears apart the life of mother and daughter alike. Lounging beside his dying mother in her hospital bed as they watch TV together, Sam Lipsyte thinks, “Lying there beside her was so sweet. Why couldn’t we just have done that all the time?”

Other essays demonstrate caregiving as an opportunity for reconnection and new insights. Novelist Ed Bok Lee tells of sitting with his terminally ill father, who for the very first time describes experiences from his childhood in Korea. Listening to these recollections, Lee muses, “In the case of adult children, it’s as if the dying parent, in a strange reversal of birth, were now being pushed slowly back through the fully grown child, whose life as a result begins to manifest some new, profound transformation to fill the void.” Short-story writer Ann Harleman’s husband developed severe MS when the couple had been married only four years; Harleman says, “It’s a different marriage than the one we started with. A marriage I would have refused on that evening 25 years ago in the California garden where we first met. A marriage I could not have hoped for, or even imagined, in the dark days five years ago. I think of it as my Other Marriage. And as I kiss Bruce goodbye and squeeze his toes and leave, I am thankful that we found it in time.”

Some of the writers exhibit unimaginable patience. Others are candid about their exhausted emotional resources. Dark humor abounds: Susan Lehman warns, “If the next thing you hear is that your mother, who is seventy-five and recently widowed, is about to be airlifted off a faraway island and deposited in a hospital right around the corner from your apartment—well, either you are in a Philip Roth novel or you are in real trouble.” And Sam Lipsyte, a former drug user but now a successful novelist and Columbia University instructor, gives his mother injections during her cancer treatment. He teases her about being “the former needle man, employing the skill set of my old habit.”

Family caregiving is a growing subject of interest as the Baby Boomers age. A number of the authors in An Uncertain Inheritance are dealing with “Sandwich Generation” issues, caught between the needs of their children and parents in decline. Caregivers will identify with many of these accounts. And those who haven’t served as caregivers for parents or spouses may well be asking: how will I do when it is my turn? Will I be up to the challenge? An Uncertain Inheritance shows that just as there are different styles of family, there are many styles of caregiving.

One strong theme runs through almost all the accounts: the “angels” who are able to help family caregivers meet their challenges. Friends and family are lifesavers, of course. But reading these personal accounts strongly underscores the vital need for formal caregiver support services. Caregiver exhaustion leads to burnout. But when support resources such as home health care workers, long-term care facilities and hospice staff take on some of the practical work, this allows family caregivers and persons receiving care to focus on themselves as people in a relationship. Ann Harleman first thinks she has failed when her husband moves to a nursing home. But then she realizes, “Bruce is sometimes mean or sarcastic with the nurses or CPNs, but never, now with me. Because I’m no longer his physical caregiver, I’m no longer implicated in his illness….Because our bodies don’t connect, our hearts can.”

These are the realities of caregiving, rather than the sugarcoated simplifications which appear in so many novels and fiction films. The skill with which these 19 writers vividly bring the reader into their experience is what makes An Uncertain Inheritance such an important addition to the caregiving literature. One could wish that every lawmaker, poised to give a thumbs up or down to a respite care bill or Medicaid cut, could arrive to the office that day having just read this book.

© 2008 IlluminAge Communication Partners