Examining Unrealistic Expectations: Report from a Scholar Turned Caregiver

Only after completing her entire book did I gain a full appreciation of the title chosen by author Laura Katz Olson. Dr. Olson is a health policy scholar who shares the personal journey of her 83-year-old mother, Dorothy Katz, who enjoys biking and being a Senior Olympic swimmer, then develops disabling Parkinson’s disease and progresses from “Athlete to Cane” (as Olson aptly titles one chapter) and, ultimately, relocates to her daughter’s home state as a nursing home resident. Olson also shares a candidly written narrative of her own “developmental journey” as a daughter who outlives her two sisters to become a solo long-distance caregiver and “Nursing Home Daughter,” all while juggling an academic position and life as a wife, mother, and grandmother.

In chronicling the consumer experiences of both her mother and herself, Olson illuminates some stark realities about the current public financing and delivery of health care and long-term care in the United States: Many older people, especially low-income, single, older women, face precarious economic circumstances while a publicly financed industry of long-term care providers thrives. Although progress has been made in “rebalancing” the proportion of Medicaid dollars paying for home- and community-based services compared with institutional services, the current system still tightly controls the number of service hours (Olson reports her mother could get 10 or fewer hours per week in either Florida or Pennsylvania when she qualified for nursing home care and was in a wheelchair), and the overwhelming majority of states have waiting lists averaging years, not months. Therefore, as the author experiences, families (usually women) bear the weight of providing the care and oversight needed to help an older adult maintain quality of life and well-being. Olson shares themes that are very familiar to those of us who have been the professionals who write or teach about this territory and then experience the humbling realities of visiting ill-prepared health care providers with our parents: arranging and patching together highly limited services and supports and completing recurring and demeaning applications for benefits and services, all the while trying to help loved ones maintain their spirit and dignity. Having academic knowledge does not protect one against the experience of dead-end phone menus and “multi-year passes to bureaucratic bumper cars” (p. 18) that one encounters when trying to track down everything from aid and attendant benefits from the Veterans Administration to eligible postacute care services through the Medicare Advantage plan to interstate transportation options for a wheelchair-bound older adult requiring two persons to assist with transfer. Even if help begins with navigating phone menus and filling out forms, ultimately, people mandate, authorize, and provide care.

Olson vividly reports the best and worst qualities and capabilities of the many individuals she meets along her paths in both states and identifies some forces that produce a poorly trained and supported workforce. Dorothy Katz receives compassionate, devoted care from Julie, a “gem” who is a publicly paid direct care worker employed by a proprietary agency. Olson discovers this hard-working, Haitian immigrant is a lifeline for her and her mother yet receives only $9.00 of the $16.50 charged by the agency and a modest undisclosed travel allowance; furthermore, she is restricted from receiving additional compensation for hours beyond those authorized by the state. The ethical dilemma of many family caregivers who wish to pay critical and deserving workers “off the books” is well highlighted. When I read some of Olson’s highly troubling encounters with hospital or nursing home staff, I wondered how often she was receiving “help” from a licensed or professionally trained social worker versus someone using the title or hired as an “exception” in that role. Because family members are not included as true team members in the provision of elder care, they are often denied information about their family members (in the name of HIPAA) and provided no background on the roles, training, and function of many practitioners with whom they come in contact in different settings.

Although there are many universal challenges to the specific caregiving tasks on the front lines, this volume also reminds us that the social and emotional experiences of elders and caregivers always occur in the context of highly individualized personal and family histories. Olson reflects a common “inner refrain” among caregivers regarding whether it is better to intervene or stand back for fear of complicating the situation, alienating staff on whom your loved one is dependent or simply making matters worse by disrespecting autonomy or lacking the right expertise. Olson provides memorable reflections on trying to support her mother’s continued enjoyment of life in the face of growing mobility impairment and blindness as a result of glaucoma. She works hard to ensure her mother’s preferences for vegetarian food are honored in settings where edible food of any kind was not readily available. Her efforts to provide her mother with “one last swim” left an image I will carry with me for some time. Despite responding to frequent crises and focusing on her mother’s preferences, Olson is frequently filled with self-doubt and guilt, common emotions among caregivers.

In carefully relaying both the tasks involved and the emotional turmoil that ensues, Olson provides a wonderful teaching volume for the preparation of scholars, policymakers, and practitioners of all disciplines, especially those who may be decades away from their own caregiving journey or individuals with little experience living with limited income. This well-crafted story contains many opportunities to explore further the social, political, and economic factors that have shaped the separate silos of care and support—financial, medical, residential, and so on—and also created the exhausting and difficult path for the caregivers who are the backbone of elder care.

In her final chapters, Olson revisits the elder care journey by examining how the financing and regulatory forces of Medicare and Medicaid in particular favor several industries, including health and long-term care providers and the pharmaceutical industry. She reviews the long-standing dominance of for-profit ownership of nursing home facilities and provides some current insights on the decrease in publicly owned county facilities, as well as the lack of transparency in ownership owing to complicated corporate arrangements. In particular, she outlines the role of private equity consortium ownership of health care companies, including nursing homes. Her “Peeling the Onion” details about the ways many facilities and providers are insulated from being accountable for quality at a most basic level are both enlightening and sobering and would prove excellent material for many policy seminars. As an educator I found the carefully footnoted research linked to the specific care experiences of Dorothy Katz especially compelling.

As Gaugler and Kane (2015) do in their own excellent volume on this topic, Olson offers her own conclusions about current and future long-term care policy, which this review cannot adequately represent; but I do recommend to readers. Before this review is printed, the ad hoc Institute of Medicine (now the National Academies of Sciences, Engineering, and Medicine) Committee on Family Caregiving and Older Adults will finalize a report and recommendations to the U.S. Congress and the nation. The broad mission of the report is to “provide recommendations for public- and private-sector policies to support the capacity of family caregivers to perform critical caregiving tasks, to minimize the barriers that family caregivers encounter in trying to meet the needs of older adults, and to improve the health care and long-term services and supports provided to care recipients” (National Academies of Sciences, Engineering, and Medicine, in press). One can only hope that the insights of Laura Katz Olson will be joined by those of many others to go beyond promoting expectations of family caregivers to supporting the vital “heavy lifting” they do every day and to advancing more humane and equitable care for elders and their family caregivers.

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