(This is from a speech I gave at the Alzheimer’s Association’s Reason to Hope event in Tacoma, Washington, in March of 2017.)
Rarely a day goes by that a cherished moment of the special mother-daughter bond I knew so well with my mom doesn’t enter my mind. I miss her daily but she lives on in my heart, and I think she would want others to know the lessons of love I learned on this journey with Alzheimer’s.
After my mom’s diagnosis, I was both surprised and grateful to learn that though this disease steals memories and abilities, it doesn’t steal love. In fact, love continues to grow and deepen, and that is one big reason you can hang onto hope today and in the future
Admittedly, changes occurred in Mom’s life. She lost her sense of smell as well as the ability to name all the plants in her beautiful garden but she continued to garden and bring beauty to her world. She worried less—which was good, and she giggled more—which was even better.
She eventually lost most of her physical abilities. But the love in my mom’s heart never diminished. In fact, it grew deeper, filling the empty places where memories once lived. I learned to focus on this love to help lessen the worries that followed me home after spending time helping my dad with her care. And that steadfast love helped me find grace in some of the tougher moments.
Having your loved one forget who you are is a big fear with this disease, and it was tough the first time she forgot me. But I knew it was bound to happen and promised myself to try to handle it with grace. So, when the time came, I played along at first.
We were watching the 2012 summer Olympics but in Mom’s mind we weren’t in her living room watching the Opening Ceremony on T.V. It was clear she thought we were right there in London and I was one of the dance performers getting ready for my act because she asked if I was up next. After playing along with this scenario for a few minutes, I excused myself from the room saying it was indeed my turn to perform. I knew better than to argue or reason with her at this point. Standing in the kitchen, I took a few deep breaths to keep my sadness at bay and waited for a little over a minute to pass—knowing our recent exchange would have been lost to the disease by the time I returned.
Saying a quick prayer that this plan would work, I poured her a glass of water and reentered the living room saying, “Mom, would you like some water?” To which she replied with a big smile, “Oh, sure, Karen. How sweet of you.” It was like I had found the reset button. A moment of pain turned to joy.
I easily could have felt hurt by this Alzheimer’s detour. I could have argued we weren’t in London and that I was her daughter and not some dancer she had just met. But by putting my mom’s feelings first that evening and remaining hopeful we’d find a way to reconnect without her knowing she had forgotten me, I learned a valuable lesson. I could alter the amount of emotional pain she would endure with this disease by responding with grace, hope, and love.
Music played a role in our journey as well. My parents especially enjoyed Frank Sinatra, Louis Armstrong, and Andrea Bocelli. In fact, my dad took her to Andrea Bocelli concerts in the living room—or along the coast of Italy in Mom’s mind at times—thanks to DVDs they had purchased through a PBS show they had enjoyed. And later, when my mom was placed in memory care, we were thrilled to learn she could still play piano from reading sheet music and could even play a few songs by heart for a little while.
She loved music and it kept her engaged and with us in so many ways. One favorite memory was when she jumped out of her chair to join volunteer song leaders at a devotional service, joyfully leading the residents and visitors in an old hymn complete with arm motions whenever she sang the chorus. She radiated so much love in that moment. I’m so glad I captured that on my camera even though it ended up a bit blurry from my rushed photography and her rolling arms. Engaging Mom with music throughout her entire journey with Alzheimer’s especially always brought smiles and precious memories for us.
I also learned on this journey that bringing awareness brings hope to others. I posted pictures of many moments with my mom on social media because even though so many of my friends knew my mom had changed in some ways, it was important to me that they see how love remained in spite of this disease. That my mom was clearly still the Queen of Hugs. That the love in her eyes and smile didn’t fade.
People learned through my photos that you can find joy in this journey. That you don’t need to hide this disease. Raising awareness about the disease and the journey helps erase the stigma associated with Alzheimer’s. Those of us who have experience with a loved one living with Alzheimer’s or any form of dementia must do our best to continue to eliminate that stigma by sharing stories of love, perseverance, and hope. At present, those are our three best weapons to ensuring a better journey for all until there is a cure.
This photo from my first Walk to End ALZ team was on the screen while I spoke: