Women suffer from depression, stroke and dementia twice as much as men. Seventy per cent of new Alzheimer’s patients are female, yet research still focuses on men. Women’s Brain Health Initiative funds education and research, to combat brain disorders in women. On Oct. 3, it hosted award-winning actress Marcia Gay Harden at the Ritz-Carlton in Toronto, to discuss her recently published book, The Seasons of My Mother, which is about her mother’s struggle with Alzheimer’s.
You moved frequently growing up. Where’s your fondest memory of your mother?
That’s like asking, “what kind of chocolate do you like the best?” All chocolate! We moved to Japan, Greece, Texas, Washington, D.C., Germany and California. In each place, I have so many wonderful memories of my mother that are specific to the location and culture. It was in Japan, however, that I first became aware of my mom as a unique human being, rather than just seeing her as mom.
I saw her blossom and then burst into the woman who inspired me my whole life. When we lived in Yokohama, she really began to pursue herself. She joined a class and learned the art of ikebana, Japanese flower arranging, whose principles are shin, soe and hikae – heaven, earth and man. She took us to Japanese festivals clad in kimonos. She collected Japanese art and beautiful heirlooms, and taught an English class to Japanese students. She was, and is still, elegant, kind and in love with nature.
How has Alzheimer’s affected your relationship?
Alzheimer’s changes every relationship into a caregiver relationship. My mom advocated fiercely for me my whole life. Now, it’s time for me to advocate for her. Conversations become one-sided, as the patient loses memory. Memory tells us who we were, who we are. As mom loses her knowledge of herself, one of my roles is to help her know the wonderful life she led, to remember for her, to write down her stories and thus leave her legacy.
You say that your mother taught you the practice of standing still. What does that mean?
It’s in stillness that we witness life’s small miracles, which are often found in nature’s gifts – the sight of bamboo growing, a flower blossoming, the sound of birds at dawn. You have to take a break from the motion and busyness of life to really bear witness to the patterns of nature. My mom taught me this on birding walks, canoeing, climbing the fire escape to the roof in my apartment and watching shooting stars. She taught me to take a break from routine and duties, to stand still and witness the bamboo growing. It’s the fastest-growing plant in nature, and you can literally see it if you stand still long enough.
Has your approach to mothering evolved?
It has, in so many ways. It’s more important to me now to spend as much time building memories and experiences as possible, to take nothing for granted and to appreciate our time together. We’re also aware of how lifestyle can impact Alzheimer’s disease and prevention. Specifically, we pay attention to healthy eating and exercise. We have cleared our pantry of sugar and gluten. My kids have also become Alzheimer’s advocates. Getting them involved early in causes that are important to them connects them to my mother.
What’s your goal with this book?
A more personal goal was to remember my mother and all the things that made her herself, to reminisce about my childhood and my relationship with my mom, and to ponder the mother-daughter relationship. My mother said, in a conversation I write about at the end of the book, that love is so important for the brain. “Love,” she said, “it happens to everyone. Fill your head with good, loving thoughts. It’s good for the brain.” I think that’s an idea worth spreading.
But the most important goal was to educate people about the disease and encourage activism. Alzheimer’s is a tough disease to write about. I don’t really want to make lemonade from those lemons. I feel like a liar. There’s very little “on the bright side” with Alzheimer’s. But there is the dictum: faith, hope and love. In this case, I feel that hope is a priority, and as more and more people talk about Alzheimer’s and drop the shame that used to be associated with it, we’re counting more and more people involved in clinical trials.
Women are discriminated against with this disease: it affects 70 per cent women, 30 per cent men. As researchers become aware of these numbers, we see more research being done on the female brain, we see more women in clinical trials and therein we may find the cure. That’s my dream: that the book sheds a bit of hope and encouragement to others who are battling this disease, so they don’t feel so alone; that, in some small way, my mom and I can help advance the cure through these stories.
What was your initial reaction to your mother’s diagnosis?
Alzheimer’s was my mother’s biggest fear. She wanted to age with her brain cognizant and her memories intact, so I met her diagnosis with a great deal of despair. Because so much about the prevention, and disease itself, is circumspect, you can’t help but feel helpless. I wanted to take it away, I wanted to take care of her, I wanted to reset time and make her healthy, I wanted her to remember who she was. Ultimately, I tried to follow some advice my mother had often given me in life: to repurpose my pain. So I became an activist.
What was your biggest heartbreak with your mom?
So many. One was downsizing her from her home. It was heartbreaking to move her away from her full, active social life with her friends, to see her unable to do many of the activities she enjoyed before her diagnosis. I miss her. I think she misses herself.
How do your kids cope with the changes in their grandmother?
My kids have all become advocates for the prevention and cure for Alzheimer’s. They don’t see their grandma on a daily basis, because we live in a different state. But they feel her presence around us as I fill the house with flowers. We visit her, and I think they cope with their loss of her by being extra aware of their own health. They’re anxious that they won’t get it, or that I won’t get it, and they want to know what the future would look like if I did get it. Those conversations are complicated, but I don’t shy away. I’ve gotten a lot of my affairs in order, so that if something were to happen, we are prepared.
Your trademark roles are conflicted, unsure characters who are going through a radical change in their lives. Does this ring true dealing with your mother’s battle with Alzheimer’s? Did your movie roles influence your personal life, or vice versa?
Aren’t we all conflicted, unsure characters, as life changes? That just seems like the human experience. I think Alzheimer’s and caregiving can bring out the best in us, if we let it – the part that is not selfish, the part that sacrifices. We aren’t often asked to sacrifice for our elders in America. They’re too often marginalized. The burden of care is one of love that I’m happy to give. It’s separate from my movie roles, but life experiences, joyful or painful, allow me to more deeply approach my characters and make them relatable to my audiences.
How does it feel to know there may be a genetic component to Alzheimer’s and the risk is higher for women? Alzheimer’s pisses me off. There’s so much unknown, but too many “mays.” Sugar may play a role in brain health. Gluten may, exercise may. We know that these things actually do play a role in brain health. But avoidance of gluten or participation in activities “may” or “may not” ensure not actually getting the disease. So knowing the genetic factor, or the propensity for women to get the disease, is terrifying. I try to remember my mother’s advice: “Be in the moment. Fill your head with good, loving thoughts, now.” I loudly proclaim my love for my children. I arrange flowers.
Helpful information can be found at womensbrainhealth.org. This interview has been edited and condensed for style and clarity.