While sharing personal antidotes about my experiences with Alzheimer’s disease, there is one reflection that holds the most powerful personal memory. Sometimes unexpected gifts arrive to us when least expected, if we open our hearts to possibilities...
I believe mom’s early emotional responses were shaped by her environment, and cultural upbringing. Raised during the depression era, she often spoke about missed opportunities, and leaving school to help support her family. Her stories were not coloured with resentment or pessimism, because she accepted with stoic resolve that this was what had to be done. This practical acceptance of life’s imbalances was a true reflection of her personality.
Mom was never overtly physically affectionate and that was how it was growing up. There were no unpredictable hugs or “ I love you's” ; just because. It wasn't that she didn't love us, this was not the case at all, but rather she did not allow the emotions to bubble through to the surface, and we felt that this was how it must be for everyone.
As her care needs heightened she was admitted to a long-term care home for her safety and well-being. Per my visit ritual, when it was time to leave, I would hug and kiss her goodbye, and before reaching the door would say, “I love you. “
I knew she would smile or close her eyes, because the power of sleep would be an ever-vigilant companion. There was no expectation for “I love you” in return, and I accepted this without question.
Then one day, it happened. She looked into my eyes and responded quite clearly, “I love you too dear.”
I gazed at her intently, and repeated emphatically, “I need to leave now, and I love you.”
And there it was, that smile again, the twinkling, almost as if she somehow knew, that the disease had erased the formal barrier that caused her to hold emotions deep below the surface, where instincts defied her.
Those words that had escaped me my entire life were spoken, and I hadn’t imagined them at all. For the barriers that prevented us from being real, and in the moment were lifted by the shadow of her illness, freeing her “social filter” to express her true feelings.
And then, the next time I went to visit, she had forgotten me. I was merely a wisp of smoke in a fire; present, but not really, quickly dissipating into the darkness. Although I deeply wanted her to return to me, I knew in my heart that this would not be so, and yet, in spite of both our our losses, dementia had given me the greatest gift of all… a confirmation that I was loved.
I believe on that day, we both had an epiphany. Mom was released from the chains of reservation, being able to say the words that were there and unspoken, and I found the mom that I knew really, really, loved me.
I do believe in the moments of darkness there is light, and throughout this journey there are many opportunities for light, we just need to see beyond the disease...