NYC Diary : Love vs Alzheimer's


When I was about 16, I spent a week in Philly with this beautiful woman. Suzanne is my Step-Dad's second cousin, but more importantly she is an artist that inspired me to follow my creative path. She too loved a good adventure and took on the responsibility of an entire warehouse building in a rougher part of town. She proceeded to renovate it into lofts, living in the middle loft space while renting the upper and lower floors to artists. I can not count the hours I spent fantasizing how I would move to Philly and live in her amazing building! During that early visit, she took me to a giant cemetery and Edgar Allen Poe's house, both at my request. She also took me to NYC for the first time. The day was spent gallery hopping and concluded with a glass of white wine in a little corner bar. That was the best glass of wine ever!

Years later I returned with my husband and friend to see Suzanne, who was again the most gracious host. Fast forward further to another visit with my husband, but this time it was different. Suzanne was still living in that building, but she had been diagnosed with Alzheimer's. It was the early stages and mostly presented itself in fleeting moments of confusion or repeated stories. 

Since that trip I kept planning to get back, but life continued to be distracting. A lot has changed for Suzanne over those years and the disease continued to progress. When I finally prioritized a trip to see her, I wondered if I had waited too long and if the Suzanne I knew was still there.

Today I joined her sister, Barb, on a visit, and as I watched Barb touch the shoulder of a woman watching TV I thought to myself, 'That can not be her.' I approached as Barb told her Amy was here to visit and she turned to face me. This woman was too tiny, too frail to be my Suzanne, but then those blue eyes, eyes who pupils were so terribly tiny, focused on me and she lit up! Yes, this was the woman I had idolized for so many years, and she recognized me! I had prepared myself for this not to be the case and not to take it personally, but to my relief she knew exactly who I was and it made her very happy!


We spent the day with her and Barb said it was the most engaged she had seen her in quite some time. We looked at family photos, old and new, and I showed her my current art projects. Barb had tried to get Suzanne to continue with her art, but she refused. Today, I had my 11"x14" sketch pad with me and I put it on her lap. She took the pencil, made a tiny check-shaped mark and whispered, "I can't," then closed her eyes. I started doodling and talking about how we were just playing around, no big deal. She would open her eyes, look at my marks, examine the paper and close her eyes again. Then I remembered how Alzheimer's patients responded positively to music. I tried the Talking Heads at first, with little response, and then I tried The Beatles. As the music played, she stirred, then her eyes opened and she began to move her hand. She pressed down hard, breaking the lead several times before getting the feel for the pressure, and then she wrote. Just a little here and there, snippets of lyrics, a mark or two and statements like "this is it" and "what I don't know." At one point we drew a bit together, just simple shapes, but it was more than she had done in a long time. Her eyes would close and I would tap the paper to the beat of the music and she would return for another mark. 


I have so much respect for her sister. She works full-time while struggling to sell that beloved warehouse building to financially support Suzanne. After today's visit, Barb and I brainstormed ways to improve Suzanne's space and a few possible techniques to engage her and continue the progress we saw today. More on that tomorrow!

NYC Diary : Love vs Alzheimer's Part II