Your 80-year-old mother, who can’t recognize you due to severe Alzheimer’s dementia, has developed pneumonia after being hospitalized with a broken hip. Her doctor has told you that she might pull through and that the medical team needs your input on how and where she will live after this episode: at home, or at a nursing home, and with what help—family, home care agency, and/or hospice. You realize that you don’t know what her wishes are—and that she can no longer express them. You also don’t know how you, as her sole family caregiver, will be able to take care of her or afford professional help in doing so. Meanwhile, the doctor is asking what measures should be taken, and for how long, to keep her alive. You don’t have the answers to those questions either. Suddenly, you feel very much alone, bewildered and overwhelmed.
In one sense, you’re not alone, as five prominent women writers recently explained during a roundtable discussion that Altarum Institute’s Center for Elder Care and Advanced Illness held on April 13. During the roundtable discussion, “The Last Word: Influential Women Discuss What Matters When Loved Ones Face Aging,” (watch it online on YouTube) the presenters—three of them geriatricians, and all of them influential social commentators and family caregivers—discussed their experiences in caring for aging loved ones and patients. The writers warned that the number of aging Americans who are struggling with these issues, along with their families and friends, is already substantial and growing rapidly.
Pulitzer Prize winning columnist Ellen Goodman introduced the panel with an overview of the state of aging in America, noting that the first members of the huge baby boomer generation will turn age 85 in 2031. This demographic “cannonball” is already hurtling toward us: each day, 10,000 baby boomers are turning 65. Goodman described her own experiences as a caregiver to her mother and related the constant and seemingly impossible decisions she had to make on her mother’s behalf. She noted that her experience has led her to develop a soon-to-be-launched program, The Conversation Project, aimed at encouraging people to think and talk about their preferences and priorities for the end of life.
Indeed, many of us haven’t given any thought to how we want to live out our final months; nor what role loved ones are likely to play during this final phase of life. Without such planning, the last months, when they come, are likely to be disorienting, frightening and overwhelming.
Geriatrician and family caregiver Cheryl Woodson, M.D., speaking from a decade of experience caring for a sick and aging parent, urged caregivers not to feel that they are not doing enough. Many have unrealistic expectations about what they can and should do, and failing to live up to these expectations can leave many feeling guilty and alone.
In fact, Dr. Woodson said, caregivers need to recognize and understand that we are facing social, cultural and demographic times unlike any in our history. We are facing a future with millions more “old old” people who will be more disabled and frail for longer than any previous generation. Caring for these aged loved ones, Woodson said, means “This is not your mama’s caregiving.” Indeed, it is a whole new world.
Dr. Muriel Gillick, a Harvard professor and geriatrician, addressed other unrealistic expectations many hold: The notion that if we simply eat well, exercise plenty and live right, we will live to a ripe old age and die in our sleep. That scenario is not likely to play out for the majority of us, who will, in fact, grow old and sick and die after many years of living with a serious chronic condition.
Author Susan Jacoby echoed this sentiment, pointed to the ways in which we deny the realities of aging and instead rely on the images we see in Viagra ads: That we will all be paragliding in our old age, living out fantasies and walking into the sunset hand-in-hand with our equally spry spouse. Instead, Jacoby suggested, we must pay attention to what we really face and acknowledge the hard realities of that future and find ways in which we can cope with frailty, illness and death.
Journalist Francine Russo gave a slightly different take on the world of caregiving during the roundtable, describing the dynamics of sibling relationships in the context of caring for aging parents. She noted that many of us will revert to roles we played as children, and that those old roles will not serve us well in our efforts to serve our parents—indeed, they can tear families apart.
Finally, geriatrician Joanne Lynn described her experiences as a physician and a family caregiver, noting that in the years when she herself cared for a very sick child and a very frail in-law, she could always find people willing to support her in the former work, but very rare to offer help in the latter. She spoke of the need for neighborliness in the future, for finding ways that communities and individuals can come together to share the common work of caring for the aged. She suggested that reforms must come at the local level and that communities need to set priorities for elder care and advanced illness and determine the shape and course of their own programs and services for frail elders.
The panelists agreed on various steps proposed—ranging from policy changes to discussions families can and should conduct—to plan for the provision of supportive services that preserve the comfort and dignity of frail elders. Such steps should also take into account both the elder’s and their caregivers’ emotional wellbeing and financial solvency from the onset of aging-related disability through death.