Maria Shriver

Caregiving: The Power of Love and a Big Open Heart

By Elizabeth Gelfand Stearns

November is National Family Caregivers Month.

When does caretaking begin?

My mother Judy was diagnosed with Alzheimer’s disease at 62. She was a beautiful and vibrant woman who created a life filled with family and friends, compassion for others, and the capacity to engage the world around her. She brought a lot to many and was loved deeply in return.

The diagnosis of her Alzheimer’s was sharp and painful, like a knife wound inflicted on our family. My father, brothers, and I all knew the language of this horrible disease first-hand; and no one was better versed than Judy herself, as she watched her own mother’s decline into the dark recess of her tangled brain, loosing cognitive function, losing herself. Judy was the stalwart caretaker of her own mother over a 20-year period.

What my mother Judy did not realize was that she was peeking into the window of her own demise. There was only a 13-year period of time that separated both her seminal roles as caretaker and victim. Research today tells us that the disease begins its ravaging march throughout the brain a full decade before signs begin to show. This would place my mother in the final stages of her job as her mother’s caretaker precisely alongside the time that marked the beginning of her own brain’s decay.

When we learned of my mother’s diagnosis, my father, her partner of 50 years and her emotional caretaker, made a clear decision: to not discuss the disease with my mom. We chose not to talk about Alzheimer’s; we did not put a name to this horrible thing that was happening to all of us. This was done from a loving and caring place, as my father believed the name would catapult her back to the same fears of loosing her mother.

I don’t know what toll not allowing my mom to engage in her disease had on her then, but I do know how it effects me now. I feel that through our love and protection we didn’t allow her to fully live the end of her life.

Ten years later, Alzheimer’s has changed and so has its victims. Many are architects of their own care plan while they still have the ability to do so. I have watched partners in caretaking – both victim and caretaker – work together, share together, cry and laugh together. Mostly, I have watched women and men diagnosed with younger-onset Alzheimer’s fully engaged in their life, afraid but not daunted, choosing living over letting go.

In such cases, fear does not become the primary driver of each day, as the victim and caretaker are able to use moments to transcend to a place of purpose and meaning not defined by the disease. While this is not easy, I have seen it done, more and more, as Alzheimer’s care comes out of the shadows and there are more resources for victims and their caretakers to go for help.

Emotions are housed in the back recesess of our brain – the place where both compassion and love can be found. These areas of the brain are not immune to the beta amalyod tangles that are the hallmark of Alzheimer’s. And yet, while the disease has the power to shrink, strangle, and destroy, it cannot vanquish the feeling of love and being loved.

Thanks, Mom, for taking care of your mother with such courage and compassion.

And thanks for your most central caretaking role: a mother who set the standard for her children, reminding us daily of the power of love and a big open heart.
 

As Chair of The Judy Fund, Elizabeth Gelfand Stearns works to ignite public awareness and engagement in the battle against Alzheimer’s disease. To date, The Judy Fund, created in memory of Elizabeth’s mother Judy Gelfand, has raised and granted over $4.5 million dollars to support Alzheimer’s research and public policy. Elizabeth Gelfand Stearns was appointed to the National Board of Directors of the Alzheimer's Association in 2011.