I invite you to follow my trail through this book, and wonder along with me. What does it mean to hold two perspectives on someone you love—the mental intercutting of past and the present—with all the trial and error, neediness and conflict inherent in both? What qualities remain to a person when cognition begins to disintegrate? How does one lead life creatively in the midst of confusion?
From the unique perspective of her two careers in geriatric social work and documentary film, Phyllis Chinlund confronts the cognitive decline of her beloved husband, photographer Ray Witlin. With the immediacy of journal entries, photographs, letters, and conversations recorded when they took place, Chinlund draws the reader directly into the couple’s lives and hearts. Over nearly a decade, as she struggles with the inevitable series of heart-wrenching decisions faced by every Alzheimer’s caregiver, Chinlund takes on additional challenges, moving from Manhattan to Maine, where she can afford to provide Ray with better care, and continually seek ways to nurture his creativity and enrich his daily experience, while pursuing her own career. Touching every note in the symphony of a long relationship, “Looking Back From the Gate” is a vivid portrait of a marriage and a testament to the endurance of love in the face of devastating mental and physical decline.
[from pp 9-10]
I tried to talk with Ray about what I feared was happening, but he fended me off. As he did that day we were sharing a Lake Tahoe vacation with my sister, Jennifer, and her son, Ketan. Ray had tired while we were walking along the shore of the lake, and we stopped to rest while the others went on a little further. The spot was magical. A clearing in the woods, with tall pines reaching for each other like a cathedral ceiling far above us, and the lake luminous below. We leaned back against some rocks and talked about the scene before us. Ray was as transfixed as I. But at dinner a few hours later, when I mentioned our time in the clearing, he didn’t know what I was talking about. My eyes widened with alarm, but he would have none of it. “It doesn’t bother me,” is what I remember him saying.
But he did understand by the end of 1997 that we were at a crossroads.
…how could we maintain enough of what mattered to us—my passion for my work and Ray for his creativity, our love for each other and for life itself—to survive in the midst of upheaval? What I didn’t foresee was that we were embarking on an amazing mutual quest.
R: I’ve been thinking about this, and it’s not quite right.
R: You know.
R: Our friend. That comes here.
P: Amanda? [One of Ray’s helpers, on whom he has a crush.]
P: Is something bothering you about her?
R: She’s not what she should be. It’s slipping.
P: In what way?
R: What I said.
P: You said Amanda’s not what she should be. Can you say some way that she’s not doing what you want?
R: I said it.
P: You didn’t mention anything. You just said it’s not right. Can you say how? … What would you want to be different?
R: I don’t want you to be different.
P (laughing): I’m enjoying some of our absurd conversations.
R (with great conviction): Absurd is the best way. The best!