I was very gratified to have a conversation about my new novel and my research with Maria Shriver, who has initiated a Women’s Alzheimer’s Movement.
My new novel The Wide Circumference of Love is a love story set against the backdrop of Alzheimer’s disease. In the four years I spent researching the novel, time and again I was deeply moved and impressed by families and individuals standing as witness to the enduring dignity of those they cared for. Alzheimer’s is a difficult, hard, turmoil-inducing illness that pulls into its sphere not only those afflicted with it but those caring for them as well. Caregivers in essence watch their loved on die twice, once as they gradually lose cognitive abilities and again as the disease ends their life. The disease inspires quite naturally feelings of rage and anger, despair and fear for the person with the disease and the same feelings haunt family members. They grieve and they care for someone and they grieve after that person is gone. Yet I was told many stories of what can only be called “transcendent love” as adult children and family members caring for someone with Alzheimer’s experienced what can only be called grace.
One of my oldest friends is caring for her ninety-year old mother who has dementia (Alzheimer’s is a form of dementia) and as she cares for her mother has found and created a deep bond with her that has erased many years of difficulties and misunderstandings. A seventy year old retired government IT specialist found himself caring for his wife struck by early onset Alzheimer’s and during the five years of being her advocate and caretaker found himself opening up to others, spending weekends after his wife began living in an assisted living memory care unit, visiting other sick and elderly and lonely people who needed expressions of concern. By giving himself to others he told me, he felt spiritually empowered. His wife’s illness opened up this region in his heart. A forty- year- old advertising executive quits the job he hates and after his mother is diagnosed with Alzheimer’s disease moves her to LA to live with him. Along with his mother he lives and takes one day at a time, treasuring her remaining abilities and lucidity, sharing with her the grief as she more and more recognizes what she is losing. They are going through a moment more tender and raw and sacred than anything he has ever experienced and feels it as a gift.
Not everyone who cares for a person with Alzheimer’s can move into grace and even for those who do the journey is long. But what makes it possible I think is the ability to accept what is, to be here now, and to recognize that even as the person with Alzheimer’s has “lost” memory and some cognition they often reside internally and unconsciously in a place of spiritual openness. The walls they may have erected in the past have crumbled, the battles they fought are often forgotten, doors one closed have been opened. There is much that they have forgotten. But there is much that they remember- the meaning of a kiss on their cheek, how to respond to a gentle touch, the deepest meaning of human connection. How to laugh, how to cry, how to smile.
Even when their personality has been radically altered by the disease people with Alzheimer’s are still human and have human hearts and souls that are both a whisper and a scream. Those caretakers I met who experienced grace no longer asked why. They only asked how. How can I love this person? How can I love myself? How can I allow myself to love them the best way I can? How can I make each day matter for them? How can I make each day matter for me? How can I take care of myself with the same tenderness I extend to them. How do I see the real meaning of what we are going through. How can what we are going through somehow make me strong?