Daddy Was My Superhero

By Mary Jo Johnson, MPA, CMC

Let me tell you about what happens when the Superhero in your life encounters Kryptonite, the destructive, weakening agent known to strip away superpowers. For many of us, this Kryptonite is Alzheimer’s Disease or dementia. Your Superhero becomes unable to fight the battle alone. The cape comes off. They need you.

Does this change in your Superhero’s strength or abilities mean that he or she no longer has an identity, a role, or significance?

It’s a difficult question, one I wrestled with myself in a very public way. I was working as an administrator in a long-term care facility when my dad developed Alzheimer’s disease. Suddenly, my work turned deeply personal. My perspective shifted. During every interaction, I was hyperaware of the language used, the moments spent, and the things that mattered. My education, professional experience, and responsibilities as an administrator seemed insignificant now that I was dealing with my own father’s declining health.

This experience just so happened to coincide with my introduction to the concept of Person-Centered Care, a philosophical approach popularized by Tom Kitwood back in the mid-1990s.

What does Person-Centered Care really mean? Answering this question requires seeing with more than just the eyes; it requires a different way of perceiving.

When you look at a person who needs care, what do you see? Do you see a person with a heart, a soul, and a spirit? Do you see a person with needs, desires, and preferences? Or do you see an empty shell of a person, someone who can no longer relate to the world around them?

Person-Centered Care requires us to recognize each person in his or her full humanity, no matter what their physical or mental condition. It demands that we see the uniqueness of each person, to recognize their individuality and autonomy, and to treat them with deep respect. Person-Centered Care means truly valuing the individual, honoring their choices, listening to their voices, and hearing what they’re saying. It means empathizing with their emotions.

Someone once said that people with dementia are merely living life in a different way; a way outside of our society’s narrow conception of what “normal” life is. In our culture, people who fall outside this nebulous norm are labeled abnormal. It is as though their personhood has been disregarded. If they’re not living a life that we consider “normal,” they are no longer a person at all.

It doesn’t have to be this way. A dementia diagnosis does not mean losing your personhood. How can we enhance the personhood of those who have dementia, offsetting the neurological impairment?

One way involves the care and treatment a person receives. It really is about how we embrace one another with a supportive, loving response and look at what can be gained, and not just what is lost. The beauty is in the moments, the relationships, and the love. The healing energy is in the power of listening. It’s then that we realize that love is listening. No words are needed. No language is required for this heart-to-heart and soul-to-soul connection to happen.

Through my deeply personal experience, I became acutely aware of what it means to care and advocate for the preservation of personhood for an older adult living with dementia. When my dad, the man I spent my entire life loving, was due to arrive at the nursing care center where I worked, my greatest fear was that he would lose his sense of “personhood.” After many years spent working in long-term care facilities, I knew how care was most often delivered. It was task-oriented rather than person-focused. I didn’t want this for my dad. I didn’t want him to be seen as just another resident, another room number, another object in a wheelchair to be pushed around. I wanted more for my dad, and for every older adult in the facility.

My dad’s arrival represented an opportunity for me to introduce the staff to a new way of thinking, not just for my dad’s sake, but for all elders making this transition. I thought carefully about how I might create a meaningful “teachable moment” for my staff.

Before my dad arrived, I called a team meeting. “Let me tell you about the man you’re about to have the privilege of meeting,” I said, pointing to an array of framed photos I had arranged on a table.

And then I proceeded to introduce them to my dad. I told them about the person he is, his likes and dislikes, his habits, his routines, and what brings him joy. I purposefully left out the diagnoses, the medications, and the deficits. My staff would learn those clinical details soon enough. I wanted their first impression to be about the person, not the diagnosis.

From that day forward, we implemented similar meetings with staff and family members to introduce each new resident.

I did this everywhere I worked from that day forward. We placed a framed Life History on the outside of each person’s room so that facility staff would know them for who they really are. This gave us a powerful foundation for building relationships, especially for those unable to verbalize their own story.

It’s a way for them to be known for the person they once were…and still are.