In the 1990s, it was common among adult children caring for their parents to refer to the role reversal as “when the parent becomes the child.”
Even I referred to my 86-year old father as my adopted child after my husband and I moved him from his Wisconsin home of 45 years into our California home. Diagnosed with dementia after caring for my mother during her final years with congestive heart failure, the Milwaukee Department on Aging case worker questioned his ability to live alone safely. He needed more help with the things he was able to do himself like food shopping, showering, banking and filing taxes.
The youngest of three children, I had no experience caring for another human being. Although my heart was in the right place, I was unprepared to care for my father. (Caring for cats does not qualify one to care for a human being.) I respected the man on whose 49th birthday I came into this world. But, his needs increased and I struggled to define the nature of our relationship. I didn’t view myself as a caregiver.
My father taught me to respect people regardless of their position. I was one of those kids who knew most of the janitors from elementary school where I learned about the workings of the boiler room through graduate school and well into my career, from university professor to leadership consultant and now, caregiver spokesperson. On the other hand, I’ve rarely felt unease calling high-level government officials and corporate leaders.
Yet caring for my father presented a major role-definition challenge. He will always be my father and the one who helped shape who I am today; yet, he grew increasingly dependent upon me. As dementia destroyed his judgment, I needed to quiet him in public places where he made inappropriate remarks. Our roles were shifting—I’m becoming my father’s parent.
This was a notable view among caregivers for their parents, 20 years ago, when publishers released titles like, How Did I Become My Parent’s Parent? while the media published topics about role reversal and how to parent our parents.
It worked for more than a decade, and then care recipients broke their silence. They began speaking about what it’s like to live with their disease or illness. Their voices reminded us that we are caring for people who need help in certain areas, but this doesn’t mean they’re totally helpless. As their voices grew in number, some of us took notice and listened. After all, who better to advise on what a person with dementia needs than the person living with the disease? Their message was, “Hey, I may have this disease that is destroying my brain bit by bit, but I’m still me.”
Today, their voices grow both louder and in number. They help raise awareness, helping us find more flexible and respectful ways to communicate with and about them. I believe the use of care partner, preferred by some, helps identify the fluid give and take between care recipient and care provider. I’ve noticed this is the choice term among those who care for people with Parkinson’s whose cognitive abilities remain functional until later in the disease.
While being your parent’s parent takes a step back, professionals are debating the effect of greeting their clients with affectionate terms such as “Sweetie” or “Honey.” I was raised in the North, worked briefly in the South, and live in California. These labels make me smile; especially, if they’re spoken in the pleasant lilt of a Southern accent. However, someone can greet me as “Sweetie” in a demeaning tone and I’ll find it offensive. Ultimately, it depends on the caregiver’s intent and the recipient’s perception. We must be willing to learn what the client prefers.
A good time to learn is during the initial intake or evaluation by asking the person in need of care or their family. In our rush-rush world, we get too much exercise jumping to conclusions. When in doubt, ask. We show how much we care for a person if we take a little time to learn what’s meaningful to that person. We show respect as we make an effort to use preferred language. After all, we take time to learn a person’s name and use it, right? There’s little difference, here.
Let’s not devolve into dictating depersonalized standards that take away from the very personal nature of caregiving. This all boils down to what’s in our hearts. Instead of creating more inflexible rules and guidelines, let us try to meet people’s needs. In doing so, I return to one of my father’s lessons. If in my heart, I care for and respect you, my words and actions will clearly convey this.
With greater awareness, the answer to the question at the top of this article is that my late father will always be my parent and I, his child.
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