Columnist Joseph Horowitz: Home health care heroes

Friday, February 19, 2021

My wife of over 50 years died of pancreatic cancer recently. She did not want an obituary or other public announcement of her death, but this piece is about the people who helped to care for her during her last days. I think she would have approved.

There are two reasons that I have written this article. The first is to thank the many people that helped my wife, my family, and me through this extremely difficult time. Among them are oncologist O. Howard, MD, the palliative care team P. Jodka, MD, and K. Martin, RN, at Cooley-Dickinson Hospital; nurses (Liz, Brian, Charline) and home health aide (Karen) from VNA/Hospice at Cooley Dickinson; Nancy B. Whitley of Barton’s Angels, who arranged for nearly 24/7 home health aides out of thin air, whereas some other home care agencies said it simply couldn’t be done; and the Angels themselves (Angela, Sue, Kathleen, Lindsay). If I have omitted or misidentified anyone, it was inadvertent, and I apologize.

Certainly the sparse availability of home health aides was exacerbated by the coronavirus pandemic, which has been much worse than it should have been, due to the profound incompetence of the previous administration and the ridiculous organization of the American health care system, but that is a different conversation. To borrow a phrase from our erstwhile Political-Philosopher-in-Chief, it is what it is, and that’s what we had to work with.

The second reason is to acknowledge and salute the profession of home health aides. “Home health aide” is not usually considered a profession. It is typically portrayed as a low-skill, low-wage job far down on the socioeconomic ladder, performed by inadequately trained, overworked people, most often women, struggling to make ends meet. No doubt that is sometimes the case. (By coincidence, an article, “This Is Why Nursing Homes Failed So Badly,” by E. Tammy Kim, in The New York Times on Jan. 1, discusses some of these issues from a different point of view.)

But the performance of the nurses and aides in caring for my wife was an enlightening educational experience for me and my two sons. We were caring for her as best as we could before they came on the scene. After watching them work, it was clear that at best we didn’t know what we were doing and at worst were actually being counterproductive in some instances.

Far from being unskilled or inadequately trained, the aides exhibited a high level of professionalism and technical skill in giving medication, cleaning and manipulating my wife into different positions in bed, while minimizing pain, discomfort and anxiety (mine as well as my wife’s). All of this was done with the utmost care, compassion and tenderness toward my wife, which was very moving to me.

When done right, being a home health aide involves considerable know-how that most people don’t possess, and hard work. Before dismissing it as “not rocket science,” one should try caring for a person in extremis. I certainly had no idea how hard it is.

The fact that home health aides are low on the economic ladder is a disgrace. They help people in pain, illness, and, often, facing imminent death, exactly when serious, competent help is most needed. Before the pandemic so-called front-line workers such as trash collectors, mail carriers, grocery clerks, and home health aides were considered by many people more or less as part of the furniture.

At the beginning of the pandemic they were suddenly elevated to hero status in the media and in signs posted in various places around town. But calling them heroes and putting up signs in the yard, no matter how well-intended, does not reward their true value. Home health aides and all the front-line workers, indeed, all working people, should be respected and paid a decent wage. Basic human decency demands it and surely the richest country on earth can afford it.

From the bottom of my heart I thank all the nurses and home health aides who cared for my wife during her last days.

Joseph Horowitz of Amherst is a professor emeritus in the Department of Mathematics and Statistics at the University of Massachusetts Amherst.