Jane Gross’s book on caring for aging parents is both an invaluable guide and a terrifying read, a book that tells you things that you didn’t even know you didn’t know—and might rather not want to confront. On one level, A Bittersweet Season provides a moving account of the illness and death of Gross’s elderly mother, Estelle. But woven through the narrative is a comprehensive discussion of the daunting obstacles that face all the ill and dying, and their children too.
When Estelle’s health deteriorates, Jane and her brother bring her back from her retirement home in Florida to New York, in what Gross identifies as a “reverse migration.” A longtime reporter for the New York Times, Gross wants to get the best medical treatment for her mother and have her live closer to her and her brother. It sounds like a good plan; yet in their “heroic phase” of immediate intervention, Gross and her brother make mistakes. They learn the hard way that it is crucially important to find a primary-care physician trained in geriatric and “slow medicine.” Highly respected specialists are eager to cure but have a narrower perspective on the post-operative caretaking needs of the old. Another lesson concerns how to choose a residential living arrangement that will provide sufficient medical care on-site. Adult children may not understand the differences between assisted-living complexes, full-care nursing homes, or expensive continuing-care communities affordable only for the affluent. A chapter on “the myth of assisted living” makes these problems clear. What is being marketed—and what is actually provided?
In the process of sorting through these challenges, Jane Gross becomes an expert on the problems of aging and dying in America. Using her formidable research skills as a reporter and founder of a Times blog on aging, Gross learns how to navigate the complicated, confusing, and inadequate systems for caretaking. A Bittersweet Season addresses financial factors and legal policies along with the ins and outs of Medicare, Medicaid, long-term-care insurance, emergency-room policies, and the hiring of health-care aides. Unsurprisingly, Gross discovers that the poor suffer and receive inadequate care. She also describes the plight of health-care aides—most of them uneducated immigrant workers poorly paid to handle a job that is both physically and psychologically demanding.
In the end, families bear most of the work of caretaking. Adult children living at a distance from their increasingly dependent parents have great difficulty coping with their inevitable health crises, and so new professions and services have sprung up, including geriatric counselors, eldercare lawyers, and “geriatric case managers,” also known as “rent-a-daughter” services. Gross describes all those sources of medical and caretaking help, providing additional lists and Web sites in a hefty appendix.
In telling the story of her mother’s illness and dying, Gross also attends to the crucial psychological and social dimensions of aging. The “reversal of parental roles” presents a special challenge for adult children. Difficult discussions and decisions are too often resisted by both generations. Taking away the keys of an elderly driver can be a symbolic blow. Moving an unwilling parent into an institution can be traumatic. At every age, denial forms a powerful defense—not just for the elderly, but for their children. Americans tend to envision an optimal end-of-life scenario in which their parents function independently until undergoing a sudden illness followed by a quick death. In reality, however, advances in medicine ensure that people will live longer and longer, with more debilitating chronic illness. The costs of caring for Alzheimer’s patients alone is projected to be $1 trillion in 2050.
My own sweet-natured ninety-eight-year-old stepmother has lived for years in a facility for Alzheimer’s patients, and resides now in the hospice-care program offered to those expected to live less than six months. She gets excellent care from the kindly staff, from her privately hired health-care aide, and from the visiting hospice team of nurses and social workers. Living in her attractive room in this very well-run, very expensive institution, she can no longer walk, talk, or see very well, and I am no longer sure she recognizes me. I console myself with the thought that she isn’t in severe physical pain—or aware enough of her impairments to suffer psychologically. By contrast, Jane Gross’s mother, also in an excellent, expensive nursing home, remained mentally alert and was made increasingly miserable by her mounting physical disabilities. She wanted to die from pneumonia, and as a “comfort care only” patient, she refused antibiotics—yet nevertheless recovered.
A Bittersweet Season portrays Gross’s mother, a former nurse, as an intelligent, distant, detached, sometimes difficult woman who suffered intermittently from depression. She and Gross had had a lifelong “arms-length relationship” until the crises of caretaking engendered a new, and closer relationship. This end-of-life closeness is the “sweet” in the “bittersweet season” of the book’s title, but readers may find the bitter facts more salient. Gross unsparingly describes the indignities inflicted by degenerative illnesses. She is just as frank about the ambivalent emotions, resentments, and tensions experienced by exhausted caretakers.
Gross and her brother were both childless, successful professionals suddenly presented with new family and filial obligations that they worked hard to fulfill. But they were helpless to restore their dying mother to health and happiness. Reduced to tears after one trying visit, Gross feels sympathy for all the middle-aged daughters weeping in parking lots outside America’s nursing homes. This struck home for me as I remembered my sleepless nights and anxious sadness on moving my stepmother into her Alzheimer’s facility. A Bittersweet Season reminds us that all the technological advances in medicine cannot solve the needs of the dying. Life in a nursing institution can be depressing. As Gross reports and I can confirm, the aged can themselves be guilty of “cruel sorting,” as better-functioning patients, rather like mean girls in high school, begin to avoid and isolate the more impaired.
As her mother’s illness grew worse, Gross researched medical journals for ways to alleviate the suffering. Together they settled on VSED, or voluntary stopping of eating and drinking, in order to hasten death. One step beyond refusing feeding tubes or ventilators, VSED presents moral challenges for those of us who see life as inviolate from conception to natural death. Eileen, the beloved Roman Catholic nurse who took care of Gross’s mother, was unable in conscience to cooperate in this dying process and recused herself. The nursing-home authorities, psychiatrist, social worker, and attending rabbi offered no objection once they were assured that this was a voluntary decision of a mentally competent woman determined to end her suffering for her own sake, and not for her daughter’s.
In Estelle Gross’s case it clearly was. But questions remain. In routine hospice care, food and drink are not forced on the dying when they naturally lose interest in eating. So is VSED a form of gradual nonviolent suicide, or a justifiable act of ending one’s own suffering by refusing futile treatment? It took thirteen days without fluids and food for Estelle Gross to die. Narcotics were administered to ease her pain. Waiting for her mother to die, Jane Gross also suffered. She admits that she had long wanted her mother’s and her own misery to be over, and so felt great relief when the end finally came. I too have prayed for my beloved stepmother to die peacefully. Yet watching her battle the flu last month, I reacted differently. Seeing her struggle for breath, an oxygen tube in her nose, I could only plead: please, please, keep on breathing, don’t die. When she did recover, I rejoiced. Now she is again able to be fed by hand, and even goes to her regular Thursday hair appointment. But am I happy for her or for my own sake? The fact is that if I were in her place, I would have wanted to die a long, long time back. This recognition leaves me wondering whether we are nurturing the last precious moments of love and care, or simply prolonging the process of dying. Can’t there be a moral way to have a painless, nonviolent natural death?
Clearly these end-of-life dilemmas and discussions will continue well into the future. But already one thing is certain: Individuals, families, medical professionals, and our society’s institutions have a pressing moral duty to reform our failing systems of care for the fragile old and dying. Jane Gross’s excellent book can help us do better on all these fronts. Middle-aged adult children can read it with their parents and help prepare themselves and each other for the inevitable. Families can be encouraged to have those difficult conversations. Jane Gross has taken her own painful experiences and worked hard to give needed help to us all.
