Faced With Caregiving, Even Experts Struggle

The self-help shelves at big-box book stores are sagging under the weight of how-to books for baby boomers new to the task of taking care of their frail, aging parents. These books touch all the bases: geriatric conditions, housing options, financial and legal matters, caregiver stress, government benefits, shifting family roles, national and state resources, checklists and Web sites. They are inclusive and informative, but a bit chirpy and somehow bloodless. Sadly, the most compelling narratives on eldercare are hidden away in medical and professional journals. Excruciatingly detailed and heartfelt as only first-person accounts can be, they are written by doctors, nurses, social workers, administrators of nursing homes and the like, all of whom thought they knew everything about America’s flawed and overburdened long-term care system — until they had to navigate it and found themselves just as flummoxed as the rest of us.
Some of these accounts are available on the Web sites of the journals that published them, notably the journal Health Affairs. In a section called “Narrative Matters,” Dr. Jerald Winakur, a geriatrician at the University of Texas, wrote “What Are We Going to Do With Dad?” in 2005, and two years later “Dad’s Legacy,” about the last year of his father’s life.“From my years as a geriatrician and now as the son of an ‘old old’ man,” Dr. Winakur wrote, “I recognize that there is but one inescapable truth: Our parents will become our children if they live long enough. . . . They will become dependent on us, our stronger arms, our acts of gentleness and caring. We will arrange for their meals, pay their bills, take them to their doctor’s visits, sit by their bedsides at the hospital and in the nursing home.”