Updated: Jun 17, 2021
June is Alzheimer's and Brain Awareness month.
It is also a very significant month for me. June 21st was my mother's birthday. June 29th, 2017, was the day Mom died from Alzheimer's.
It is also the month I started my company, Alzheimer's Matters, and the month that I knew that my book, "Alzheimer's Matters: A Caregiver's Guide through Love & Learning" would be published. I was beginning a new journey in life to share all that I have learned about Alzheimer's, since the 1980's when my maternal grandmother had, and later died of the disease, and decades later, when my mother's two brothers also died with the disease.
This June 29th will be four years since my Mom died, at the age of 78. She would have been 82 this June 21st.
I have learned so much during all of this time, but this month, when I try to boil it all down to what I most want to share, it is this:
As everyone knows, Alzheimer's is a disease of the brain. Also, as everyone knows, there is no cure. There are medicines that may help curb symptoms or slow progression, according to research. There is even a new medicine just approved in the last weeks. Those of us who have felt the impact of Alzheimer's in our lives dream of the day when Alzheimer's is cured and we see only white flowers flying on our annual Alzheimer's Association walks. Even one non-white flower will be one too many.
Until there is a cure, however, there is one thing that I believe is most important to share. That is that there is nothing more important for a person with Alzheimer's to have than unconditional love. There is nothing more important that a caregiver can provide to a person with Alzheimer's than unconditional love.
I was by my mother's side for most of the last several years of her life. I watched firsthand how the world around us interacted with her. I saw the confusion in her eyes when she wondered what happened to all of her friends and family -- many of whom no longer visited. I felt angry when a person asked Mom a question and she answered unintelligibly, and the person looked at her almost with disdain, turned and walked away as quickly as possible, as if whatever Mom had might be catching. Surely, by now, I thought, people should understand that Mom must have some type of dementia, and once they understood this, there would be no judgment or fear or rejection.
I can empathize with why people stopped visiting with Mom, and even why they might turn away whenever Mom interacted with them in a way that did not make sense. It is hard to know what to say to someone who likely does not remember exactly who you are. It is difficult to do things together when the person who has Alzheimer's may not enjoy the same things anymore, or has lost the capacity to engage in almost any activity. It takes patience to stand and continue to talk to someone who may not be making sense when you ask a question.
But, I also know beyond a shadow of a doubt that Mom responded to love, whether she remembered who you were exactly or not. She saw it in the other person's eyes, or felt it in the touch of their hand, or understood it as they told a story she did not remember, but she felt the happiness of the time they described. When the other person accepted her, she accepted them right back, it always seemed to me.
I watched how she interacted with people who had the capacity to give unconditional love, like her friend, Janice, or the caregiver who was with us for the final months of Mom's life, Malisa. Mom felt safe with them. You could almost see the energy that pulled Mom closer to them as they sat together. Even in the end, when Mom was no longer able to smile, she was most content when Malisa was near.
The ability to share unconditional love seems more rare and magical than somehow, I think it should. Don't we all have that ability, even if it has seemingly disappeared behind walls built of resentment, guilt, or any other emotion or thought we might have?
I have never shared a video I have of Mom in the later stage of her illness singing along to an #AndreaBocelli song (we listened to him constantly). But, the video shows how the thought of love can change everything in a second. At the beginning of the video, Mom is not really connected to anything around her, which was typical of this stage of her illness. But, she is listening to the music (which she loved so much). And, then there is a moment in the video after Andrea sings, "...My Love," and Mom looks up, and all of the sudden, she reconnects with love in her own eyes, and looks me straight in the eyes, and says, "What's that? LOVE." For the rest of the video, she has joy.
I hope you can see it. I certainly can.