What follows happened several years ago. The time or date does not matter but the moment is timeless.
Occasionally a smile unexpectedly bursts forth from someone and transforms the day into pure sunshine. That person might be a spouse, your child, a relative, a friend, or even a stranger. This is about one of those smiles. This smile came from my wife, Marty.
Marty was diagnosed with cancer (lymphoma) in 2010. After many cycles of chemotherapy, the cancer seemed to be in remission. But her memory had also been slipping and three years later she was diagnosed with Alzheimer’s disease.
As her primary caregiver, what I had learned was that Marty had taken a journey (as do all Alzheimer victims) into a nether world, a nether world with an ever-vanishing landscape of what once was. An invisible eraser had entered her mind and was moving back and forth, making her memory vanish with its incessant woosh, woosh.
My task as her caregiver was to do my best to guide her through the ever-increasing unknown world she had entered. If that sounds bizarre, unusual, or weird, that’s because it was. I, as do all caregivers to those with this illness, do our best to navigate this strange world where nothing is ever the same and every day is unpredictable.
Joyous Moments
The nether world mentioned does have patches of beauty, little islands if you will, strewn randomly about the expanding nothingness. What follows is about finding one of these little islands, stopping there and thanking God for the moment. These moments were one of my perks. I never knew when they would appear but, when they did, I was always grateful.
Two years before, Marty had fallen and broken her right ankle. It was a severe break that required surgical repair. The rebuilding process included the use of various pins and screws. The course to recovery included time in a rehab center, ongoing physical therapy at home, and increased doctor visits.
During those months the Alzheimer’s had rapidly exacerbated. I realized that the combination of trauma, hospitalization, surgery, anesthesia, rehab, and time away from home contributed to her rapid cognitive decline. Breaking her ankle had just added ‘fuel to the Alzheimer’s fire.”
Marty began complaining of pain in her surgically repaired ankle the day before Thanksgiving, 2016. Thanksgiving Day, the ankle was discolored and quite swollen. She could not stand up, and even touching it resulted in severe pain. Our Thanksgiving holiday proved to be far from traditional.
The first thing Friday I brought her to the doctor. He immediately knew it was seriously infected and prescribed antibiotics. The medication did not help, and by Tuesday she was in the hospital. Thursday her ankle was operated on, and all the hardware was removed. They cleaned the infection from the site the best they could. However, the infection had traveled deep into her bone. Onward to a rehab facility.
A Grand Piano
Marty was taken by ambulance from the hospital to Bon Secours, Maria Manor, in St. Petersburg, Fl. I arrived a bit after she did. When I walked into the lobby and down the hall, to my right was the chapel, and to my left a spacious room they used for events. In the rear corner of this room, I noticed a grand piano sitting quietly by itself, minding its own business. Marty, who began playing the piano at the age of six, always talked about how she wished she could play a Grand Piano. My “wheels” began spinning, and an idea was born.
We had a piano at home, and she played it every day. The Alzheimer’s Disease had not seemed to have affected that part of the brain, and she could still read and play music. But she would not play in front of people. She even shut the front door when she played at home so no one would hear her (that drove me a bit crazy). Anyway, I was determined to get her to sit at that Grand Piano and begin fingering those keys. I knew it would be no easy task.
She had been admitted on Saturday evening, and on Sunday afternoon I got her into the wheelchair and took her for a tour of her temporary home (She was to be there until at least the beginning of January–maybe longer). We took the elevator down to the first floor and somehow “managed” to find our way into the event room. No one was in there, and I said, “Hey–check it out, Marty. That’s a Grand Piano in the corner. Let’s take a look.”
Timing Matters
My goal was to get her to simply sit on the stool. She refused. I knew that timing was everything, and this was not the time. She would not remember that we were there, so I would have to choose a better time and a better way of introducing her to the piano. Sometimes people with Alzheimer’s do not remember things that happened minutes earlier.
Tuesday, I managed to get her to slide out of the wheelchair and onto the piano stool. She felt the keys and grinned. Then she got back into the wheelchair. Thursday was the Feast of the Immaculate Conception, and I knew in my gut this would be the day. I brought sheet music with me from home and stuck it in the pouch in the back of the wheelchair. She had no idea.
Thursday, I took her down to the chapel for the 11 a.m. Mass. Mass ended at 11:45, and I casually began pushing the wheelchair toward the side entrance of the event room. She had no idea where we were going, but before she knew it, she was next to that Grand Piano. This time she pushed herself up and immediately sat on the stool. Her fingers instinctively reached for the keys in front of her. At first, they remained still.
Slowly her fingers began to feel their way around the keys under them. They were not pushing down, but I knew the moment had come. I reached into the pouch behind her and pulled out sheet music. I placed it in front of her and softly said, “Here ya go.”
The Piano Smile
Her fingers began to move, and the next thing I knew that event room was filled with the music of the Skater’s Waltz. They say a “picture says a thousand words” so I quickly grabbed my phone and took her picture. We had landed on one of those little islands of beauty and the “Piano Smile” captured in the photo proved that to be true. For me, that “Piano Smile” is one of the greatest Christmas gifts I have ever received.
She did not remember being there and she had no idea that more than 30 people filtered in and took seats to listen to her playing. I did bring her back again and I showed her the Piano Smile photo I had taken. I had it enlarged and framed. When I showed her, she stared at it and stared at it and then tears came to her eyes. I was not sure what was happening inside her head but I believed there was some ‘remembering” going on.
I insisted on bringing Marty home earlier than they had planned and her doctor agreed. She came home Christmas Eve. The Alzheimer’s and lymphoma combined to take her on her final journey March 27, 2017. But I still have the picture and her Piano Smile lives on.
Merry Christmas everyone.
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