Caring for the long haul: Long-term care needs and the (moral) failure to acknowledge them

Introductory remarks: “Cranky Uncle” and other scenarios

As the mother of a daughter who has and will always require care to meet her most basic needs, I have seen firsthand how critical it is to have adequate means by which to meet those needs—for her sake, mine, and my family’s. Her flourishing life has contributed to enhancing not only our own, but those of all who care for her and who enter our lives. I have wanted to see us do better by all the families who struggle and have to scratch and claw their way to access services and resources their children need. I have tried in my past writings to articulate the need and the reason why we as a society, as a community, are neither just nor caring as long as we leave their needs unmet. At the same time, I have watched as my older relatives have reached a point in their lives when they, too, require care; here again, the need cries out for a community response. My daughter’s long-term needs and theirs’ exhibit important similarities, but also differences. At their heart, they show the difficulties and dilemmas of long-term care. In this essay I subject the question of long-term care to two sets of dual lenses—the political and the personal; the material and the moral.

The problem of long-term care concerns both the individual who is not able to manage his or her daily needs and many other affairs on their own, due to chronic illness, frail old age, or long-term disability. The needs take many forms, but one that most of us, if we are fortunate enough to survive to old age, will confront, and that many are faced with, are the demands of and concerns about family members or close friends. Meeting the needs of people with long-term conditions is troublesome for the individual and challenging for the family, both because the needs are significant and the response to them faces impediments created by society and not infrequently by the individuals themselves. Facing the reality of being dependent on others for daily needs is rarely welcome in a society that values independence. Knowing how to meet those needs while respecting both the will and the fragility of another is a rare skill. Let us consider a familiar sort of case.¹

If you are over fifty, you might have experienced something like this:

Your uncle is a childless widower in his mid-eighties with numerous health problems: the onset of Parkinson’s disease, a slow-growing prostate cancer, painful arthritis, and pain from previous poorly healed injuries. He takes a lot of medication and sleeps a lot. He can barely eat because of increased swallowing problems. He falls, is hospitalized, and is sent home. Physical therapy for balance is recommended but ignored; he falls again, is hospitalized, is sent home, is prescribed physical therapy which he still refuses; falls a third time, is hospitalized, goes to rehab, is sent home. The Parkinson’s progression is the probable cause of the falls—three in a year—the last two injuring his arm and face.

As he cannot manage alone, especially since the injuries have left him little use of his arms, he has a live-in caregiver, an illegal immigrant (or migrant) who is paid a minimal amount and sends her wages back to her family in Ukraine. Uncle’s family consists of an older sister with serious health problems, and several nieces and nephews in what is a close family.

Oh—and did I mention that he is a cranky old fellow?

Cranky though he is, he is very precious to his family. He has overcome numerous hardships and has helped his family in many ways. The man needs care, far better care than he is getting, and after the latest fall, the nieces insist on it. They hire a private care management agency that provides a nurse and social worker to handle the transition between rehab and home...