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Who Am I to You?

April 16, 2013

By Charles E. McJilton

The familiar face, the warm smile, the gentle greeting were all gone. At 0415 my father stumbled into the kitchen looking lost and unsure of himself.

His eyes told the whole story. They darted about the room looking for something familiar to anchor his reality. Nothing clicked. Starting to look around furtively, he met my eyes. Still nothing. And in a quiet, almost panicked voice peering forth he asked,

“Who are you?”

I caught myself from blurting out that I was his son, took a breath and replied,

“Charlie McJilton.”

He seemed to ponder this for a moment, but it did not register at all. His next question completely caught me off guard,

“Who am I?”

Indeed, who was he? The man before me was not the father I had known all my life. His expression was one of childlike terror at being awoken from a dream and finding himself adrift in a reality he could not anchor himself in. Again, I caught myself from blurting out more information than he could process.

“You’re Chuck McJilton”

Still nothing. He buried his head in his hands and mumbled that he did not want to go back. He could not go back. It was all wrong. Finally it dawned on me he was reliving the disastrous train trip out west last fall to visit my younger brother in Seattle. Two of my sisters had accompanied him on the train and they made it almost to Spokane, Washington from the St. Paul, Minnesota when he completely lost touch with reality. They both said it was unequivocally the worst experience of their lives. At 0415 I had a small, small glimpse in my kitchen of what it is like to become a stranger to one’s own father.

You forget how powerful a warm smile or simple recognition is until it is gone. The previous night he had been alert, witty, and funny in his own quiet way. Now he was scared and confused. Worst of all, I was a stranger to him.

It was painful to feel the loss. It was not death, because he was still alive, but there was no connection between us. I was an unknown person before him. As I began to feel the sharp pain that accompanies loss, I slipped into my own grief and felt unsure what to do next. Suddenly, I realized I had to shift inside. It could no longer be about me losing a father, but how I could be present to this lost soul in front of me.

Trusting my gut, I withheld questions and avoided bouncing him with probing questions. Instead I stayed present and let him guide the conversation which ever way he wanted. After all, it was his reality that had become untethered and he needed his own time and space to find himself again. He asked about Mary Kay (my mom) and I said Mary Kay was at church for adoration and would be back later. I showed him the small message board my mom kept updated with the daily schedule. Even though I once thought it was a bit overboard, I was glad it was there to provide proof that what I said was true. Still, this did not help much and he remained confused as he read the words.

I stood on one side of the breakfast bar and he on the other. My laptop remained open. I had been up since 0200 working when he appeared in the kitchen. Standing there he alternated between burying his head in his hands and looking around. Nothing seemed to be working for him and the more he tried the more he looked confused.

I offered to make some hot chocolate and he accepted. After about 15 minutes he declared he should head back to bed.

“You feel better?”

“Nope.”

Four hours later we were in the basement and he was completely lucid. We talked and I asked if he remembered what happened. He did.

“Maybe you cannot answer this, but what do you want from me in those circumstances? I want to respect your wishes.”

This began an intimate discussion. He had no answers and this was new territory for me as well. But amidst that uncertainty we connected as two travelers negotiating a new development in our journey together. I found then as I did hours earlier that words were less important than a sincere desire to be present to each other and respect each other.

I am not only a son but a father myself. Just the night before I had been looking at videos from Christmas 2001 with my oldest daughter. I had never seen these videos before and they brought back a flood of memories and emotions of our time spent together.  What if those memories were erased and I know longer recognized her? I know the pain she would feel.

My younger brother had flown from Seattle and was visiting with me that weekend. Later that same morning told him what happened and remarked almost offhandedly,

“I felt unsafe like (dad) could be violent at any moment.”

To our mutual surprise, he had the exact same feeling at a different time while at the house.

Now, let me be absolutely clear and say that my father is not a violent man and never has been one. He avoids confrontation and is gentle at a cost. But in our professional lives, my brother and I deal with people who can become volatile and violent with very little provocation. We have learned to hone our senses and to be sensitive to warning signs that something bad could happen quickly. So, it surprised us both that we experienced those warnings when our father appeared less lucid than usual.

But this is the reality of a loved one slipping into dementia. You experience the afflicted one in a completely new way. Our family is hardly the first to face this and unfortunately not the last. But just as my dad said, “There is not a on-off switch,” there are many unpredictable factors ahead.

When we finished talking in the basement my dad extended his hand and we embraced. He was clearly grateful for all the love he received from all the patient, loving people in his life. As he spoke about them you could not help but feel the warmth amidst the winter of his life.

“I know my time is coming, but I just want to be God’s instrument to share his message in whatever way I can.”

And in that moment I felt the universe open up as I saw the multitude of lives he has touched by his gentle journey through life.

Pain does not always stop at tears and sadness, but sometimes it can be a gentle arrow pointing to something richer. The pain of losing my dad to dementia is being replaced by the gift of being present to another soul on his final journey.

This article was originally published on The Talking Man blog and is reposted with permission.

 

About the author: Charles E. McJilton is the founder and CEO of Second Harvest Japan (2HJ), the first food bank in Japan. He shares stories from his life on his blog The Talking Man (http://mcjilton.wordpress.com/).
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