Excerpts from “Where’s my shoes?” My Father’s Walk through Alzheimer’s
This is the story of my father’s walk through Alzheimer’s … I joined him on what would be a five-year journey. Together we learned to communicate and love unconditionally, to cope with our circumstances, and to be more patient and compassionate. Through it all, my honesty and integrity were tested repeatedly. Our lives were forever altered.
“Where’s my shoes?” is the (grammatically incorrect) question my father asked repeatedly as he struggled to live with Alzheimer’s.
“Where’s my shoes?” is the unique telling of the caregiving journey as it occurs. Instead of recalling details years later with the benefit of hindsight, each chapter unfolds in the present moment. In this way, it preserves the poignancy and freshness of each experience as it happens–the same way you are walking your own caregiving journey.
My Last Visit?
In August, I opened the front screen door and knocked on the oak door. What a surprise when my father opened it immediately. Greeting me with a big smile, he said, “It’s good to see you! Were you in the neighborhood?”
“Yes,” I muttered, distracted by what I saw. He was wearing the same striped shirt he had worn five months earlier when [my husband and I] saw him in March. Except this time, it was dirtier and several of the buttons were unbuttoned. As he stood there, stooped from eighty-six years of life’s burdens, I could see darkened skin near his collarbones. As I moved closer, pungent body odor flooded my nostrils. I realized he was dirty. It was a hot and humid 85-degree day in Milwaukee. I knew my father had not showered or changed his clothes since March. How sad. My father lived in his own home for forty-five years and he looked and smelled worse than a homeless person! What was I to do?
Our Lives Take an Unexpected Turn
At about 7:00 p.m., as the sun was setting in Milwaukee, my father and I boarded a plane for Los Angeles. This was his first commercial flight. Sitting by the window, Mardig couldn’t fathom the idea of flying six to seven miles above the ground. He also couldn’t imagine such a good meal being served on a plane. In fact, he didn’t believe he was flying in a plane.
Adult Day Care
We are barely keeping up!
Sally used to take her father to the local … [adult day care] … and highly recommended it. It kept her father’s mind active and allowed him to socialize. At first, I didn’t like the idea. After all, parents take their children to day care. Children don’t take parents to day care. At least this is what I believed. I had so much to learn.
The Ultimate Betrayal
I wasn’t doing much better.
My father had a doctor’s appointment, and I was going to take him. We got into the car and I reached over to help him put on his seat belt. My mind was focused elsewhere. What am I’m forgetting? Do I have all his paperwork for the doctor? I hope we don’t have to wait long in the waiting room. The last time, he spoke loudly and even swore. He never swore before. There were children in the room. They looked at us. I turned the key in the ignition–starting the engine. David and I will have to make time to review Mardig’s bonds to see which bonds have stopped earning interest before year-end. Then again, he may have to pay too much in taxes already. Maybe we’ll wait to cash in the bonds until next year. I’ll ask the accountant. Oh, geez, I should have brought the papers for the accountant. I shifted into reverse. When will this end? I really need to get on with my career! This is no way to build a business. How long can David and I last like this, with so little sleep? Then I started backing up.
Thoughts swirling around my mind like a blender . . . BAM! I stopped. I wasn’t going anywhere. Damn! I had backed into the garage door! “Oh, shit!” I said aloud.
Mardig looked at me. “What was that?”
The Great Escape!
The phone rang. It was the sheriff’s deputy. Martin Avadian had disappeared from the facility. What? Did I hear that correctly? Only twelve hours after Mardig walked across the threshold into a different life, we received the worst possible news. Exhausted, our energy reserves depleted from the events of the preceding days and the admissions process that morning, it was almost impossible to believe.
The Estate Sale
I stood among my parents’ possessions . . . all the things they kept from me because they didn’t want me to know what they had. And here I was [now], taking care of it ….
The estate sale was about to begin. I wanted to capture everything on videotape beforehand. The estate sale administrator’s assistant agreed to videotape me while I walked around and described everything.
We started outside on the sidewalk. A wide-angle shot included the house with me standing in the foreground. Just as I began saying a few words about the house and the park across the street, a van pulled up. In a matter of seconds, the passenger door opened and a little black dog ran out. A woman followed, chasing after and shouting at the dog running down the sidewalk. We stopped taping. She scooped up the dog and scolded it as she carried it back to the van. Then she returned and took one look at me.
The childhood bully immediately came to mind. “No, it can’t be!” I said to myself.
The Little Things Matter Most
When I visit Mardig, I focus on the present. I remind myself to accept him as he is, not as he was or could be. As the disease progresses and takes its toll on his brain, this becomes more difficult. It is a challenge to watch him struggle to make sense of his world. It becomes increasingly difficult emotionally to listen to Mardig desperately try to make sense of his surroundings. His vocabulary slowly escapes him and he struggles to find the words to express himself. I watch him try to recall his family: his children, his wife, his brothers. His world is gradually shrinking, and he is left only with little things, his memories of mere incidents from years gone by.
In the hours I’ve spent with Mardig, I’ve learned little things matter most.
Mardig Makes Life’s Ultimate Transition
I breathe deeply. In [a] less than ninety second [voice mail message], I have ridden a … roller coaster. A flurry of thoughts rushes through my mind. My now empty heart echoes as I try to grasp the emotions I am feeling. My father is dead. He is no more. He is gone. I can’t visit him anymore.
Mardig Lives On
Even little things can seem overwhelming, like when Mardig received two requests for jury duty. I sent back the form with a note that he died. A second notice arrived; this time they required a doctor’s note to attest to Mardig’s inability to serve. This posed a bit of a challenge. I returned the form with a note: “We regret we are unable to find a doctor willing to declare Martin Avadian’s inability to serve since he died.” SIGH, the price of bureaucracy!
Mardig would be surprised and humbled knowing the last years of his life are helping so many. As worldwide awareness of the impact of this disease increases, I grow more confident that one day, when I’m sitting in a nursing home and I reach out for help, someone will approach and extend a hand to comfort me.
Thank you for letting us take this journey with you, Mardig.