Fiore on Care of the Dying

“What is life all about anyway if not to honor our relationships and take care of people who took care of us? What makes us human if not this caring?”

These questions formed part of a message I received last December in response to a column about parent care. My reader identified herself as Nina Fiore, a 31-year-old woman who had spent the previous year taking care, first of her father, then of her uncle, as they were dying.

To do so, this young woman had to break off her career, leave her home, and provide for both these family members in turn. Of this time she writes: “The experience is both rewarding and incredibly difficult at the same time.”

To her, it is mistaken to consider care of the dying as merely a responsibility or as burdensome. In fact, she criticized my column about a middle-aged career woman who abandoned her work and moved back home to help her mother. This reader found fault with me for allegedly presenting the woman as sacrificing herself rather than taking on an experience from which she would benefit.

In fact, I have long agreed with my correspondent’s point of view. I have often had occasion to quote author Mary Pipher on the subject: “Parents aging can be both a horrible and a wonderful experience. It can be the most growth-promoting time in the history of the family.

“Many people say, ‘I know this sounds strange, but that last year was the best year of my parents’ lives. I was my best. They were their best. Our relationships were the closest and strongest ever,’ or, ‘The pain and suffering were terrible. However, we all learned from it. I wouldn’t have wanted things to be different.’”

Like other caregivers, my correspondent had to confront American society’s taboos regarding death. She tells how “neighbors, friends, co-workers, and most family members can barely deal with the reality .  .  . and .  .  . therefore ‘check out’ of most  people’s lives, right when they need them the most.”

As she sees it, empowerment counts as one of the greatest needs of people approaching death. Her task became to “make them feel empowered while they were losing power.” This notion she understands as the need to feel respected and to have one’s dignity preserved.

She also insists on the need for advocacy on behalf of dying patients. This I heartily second, since people with serious disease very often feel too weak to make a case for themselves. From personal experience, I know what a difference it makes to have a family member there to represent my interests.

Nina Fiore credits her then boyfriend, now fiancé, both for understanding her need to be with her family members and for coming often to help out in the caregiving tasks. “I would not want to spend my life with someone who could not understand and do that,” she says.

This young woman indicts society for wishing to shield young people from contact with the dying. “How does youth mature,” she asks, “if it is sheltered from life’s basic events?” Further, she raises the question of priorities by asking “Is it more meaningful to bring home a paycheck than to be with people most important to you while they die?”

This latter question was presumably directed against my statement about not wanting my young daughter to be deflected from her own career by taking care of me when the time comes for my own decline and death. However, I do recognize care- giving to be one of the most valuable human experiences and, for young people, one of the most maturing.

Not basing one’s identity on a career, as Nina Fiore suggests, also shows wisdom although I feel that a career, seen in perspective, itself can contribute much to the maturing process. “I also never confused my work for who I am as a person and for what is truly important to me,” she adds.

Taking care of family members as they decline has helped my correspondent deal with guilt. “I can rest more easily in my own head, knowing I did all I could for them while they were alive,” she writes. It is liberating for her to feel relieved of the burden of guilt as she looks back on this experience that has helped redefine her sense of herself.

My correspondent, by the way, did not grow up privileged and affluent. Her parents were immigrants and her father did not have a high school education. He owned a small barber shop on Wall Street in Manhattan and his wife served as his accountant.

I have shared the views of one reader because I was deeply touched by her response. Hers was the kind of message that gives writing a weekly column added value.

Richard Griffin