Alzheimer’s, Memory, Being

Krista Tippett, Host

This week’s program is another one that draws on my past and tugs fiercely at my heart. I write about my formative, wonderful, heartbreaking experience as a chaplain to Alzheimer’s patients in my online journal this week. When I wrote my book a couple of years ago, I had to recognize the men and women I came to love who had Alzheimer’s as being among my greatest teachers. And I found in Alan Dienstag the wise teacher and conversation partner about this experience that I’d been waiting for, without knowing it, all these years. He wrote to me afterwards that the conversation was very nourishing for him, almost therapeutic, and it felt that way for me too.

Like the best of conversations that delve deeply into particular human experiences and passions, as Trent noted after he heard the interview, it speaks beyond those particulars to the wider human condition. This is a mystery, and part of the reason I keep doing this work.

I’d also like to do a kind of shout out and thanks here to the Masonic Home and Hospital in Wallingford, Connecticut, where I spent several hours each week over 18 months that are now woven into the fabric of a radio program. Recently out of the blue I received an e-mail — through our show inbox — from Ray Cooley, who was the chaplain there and my mentor and supervisor through that experience. It meant so much to me to hear from him and to know that he’s listening!

Speak, Memory by Trent Gilliss, senior editor Phillip Toledano’s “Days with My Father” is a moving, personal photo essay. To call Toledano’s work a “photo essay” is simply inadequate; it’s so much more than that. It’s a reflection on memory and relationships, on absence and loss, and on the frail, tender spaces between the love of a son and a mother and a father. It lacks pretension. I’ve imbibed this son’s portrait of a 98-year-old man many times — the first at three in the morning, the last reading Toledano’s simply worded tales of remembrance and observation to my ‘tiny’ family during supper. We laughed. We cried. We sighed. We kissed our boys. Yesterday, we had our first cuts-and-copy for a show addressing Alzheimer’s disease (podcast release, March 26th). While listening to Krista and psychologist Alan Dienstag’s conversation, the title of Vladimir Nabokov’s memoir kept swirling around in my head, “speak, memory.” I even found myself mouthing the words in some strange poetic manner. Why? Dienstag’s insights into Alzheimer’s became universal quite quickly. His experiences speak to memory writ large. They speak to me in my life as I try to remember all that is good, and even my failures. Nabokov spoke to this in his writing about his own life. And I’m learning that there is this indistinguishable line between the autobiographical facts and events of one’s life and the stories that surround them, that build on them, that transcend them. That includes the stories we tell to our loved ones. They become as true as any recordable event. Sharing these stories is a way to communicate when all else is lost. Giving away these memories in some recorded form ensures that these memories endure — even as the person holding these memories loses contact with them. And although Toledano’s father has short-term memory loss and not Alzheimer’s, a common silken thread of factual events mixed with stories fill the gaps where memory ceases to exist. And from this necessary mix a new story emerges. As his son records these memories, remembering begins again. And that gift of memory is given to us. I’m incredibly thankful for that act. (photo: Phillip Toledano)
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Speak, Memory

by Trent Gilliss, senior editor

Phillip Toledano’s “Days with My Father” is a moving, personal photo essay. To call Toledano’s work a “photo essay” is simply inadequate; it’s so much more than that. It’s a reflection on memory and relationships, on absence and loss, and on the frail, tender spaces between the love of a son and a mother and a father.

It lacks pretension. I’ve imbibed this son’s portrait of a 98-year-old man many times — the first at three in the morning, the last reading Toledano’s simply worded tales of remembrance and observation to my ‘tiny’ family during supper. We laughed. We cried. We sighed. We kissed our boys.

Yesterday, we had our first cuts-and-copy for a show addressing Alzheimer’s disease (podcast release, March 26th). While listening to Krista and psychologist Alan Dienstag’s conversation, the title of Vladimir Nabokov’s memoir kept swirling around in my head, “speak, memory.” I even found myself mouthing the words in some strange poetic manner.

Why? Dienstag’s insights into Alzheimer’s became universal quite quickly. His experiences speak to memory writ large. They speak to me in my life as I try to remember all that is good, and even my failures.

Nabokov spoke to this in his writing about his own life. And I’m learning that there is this indistinguishable line between the autobiographical facts and events of one’s life and the stories that surround them, that build on them, that transcend them. That includes the stories we tell to our loved ones. They become as true as any recordable event.

Sharing these stories is a way to communicate when all else is lost. Giving away these memories in some recorded form ensures that these memories endure — even as the person holding these memories loses contact with them.

And although Toledano’s father has short-term memory loss and not Alzheimer’s, a common silken thread of factual events mixed with stories fill the gaps where memory ceases to exist. And from this necessary mix a new story emerges. As his son records these memories, remembering begins again. And that gift of memory is given to us. I’m incredibly thankful for that act.

(photo: Phillip Toledano)

Touching Soles

Trent Gilliss, Online Editor

A newborn's foot. (photo: Shelley Gilliss)One of the most difficult aspects of working at Minnesota Public Radio is that I often don’t get a chance to listen to public radio on the weekdays, especially during working hours. Thanks to a new baby boy, I was actually able to listen to a documentary on Alzheimer’s disease by a colleague and former producer at SOF, Brian Newhouse.

It’s a wonderfully crafted piece that’s full of facts and figures and scientific experts discussing the problems and approaches to treating and curing the disease. But, the part that sang to me, is a follow-up interview with a man in his 40s who describes the way he communicates with his wife now that he is home-bound:

“In essence, she’s sort of lost that engaging partner that she used to have. But what we do do is we will, you know, I’ll have her lay on the couch, and I’ll rub her feet and so we communicate a lot through touch now. So there, there are moments of grace, and there are, there are gifts in, within Alzheimer’s that, that you have to, you don’t want to leave those behind as you’re struggling with some of the darker realities of the disease.”

His sentiment transported me down the whooshing tunnel to a story Parker Palmer told to Krista in our show on depression:

“There was this one friend who came to me, after asking permission to do so, every afternoon about four o’clock, sat me down in a chair in the living room, took off my shoes and socks and massaged my feet. He hardly ever said anything. He was a Quaker elder. And yet out of his intuitive sense, from time to time would say a very brief word like, ‘I can feel your struggle today,’ or farther down the road, ‘I feel that you’re a little stronger at this moment, and I’m glad for that.’ But beyond that, he would say hardly anything. He would give no advice. He would simply report from time to time what he was sort of intuiting about my condition. Somehow he found the one place in my body, namely the soles of my feet, where I could experience some sort of connection to another human being. And the act of massaging just, you know, in a way that I really don’t have words for, kept me connected with the human race.

What he mainly did for me, of course, was to be willing to be present to me in my suffering. He just hung in with me in this very quiet, very simple, very tactile way. And I’ve never really been able to find the words to fully express my gratitude for that, but I know it made a huge difference. And it became for me a metaphor of the kind of community we need to extend to people who are suffering in this way, which is a community that is neither invasive of the mystery nor evasive of the suffering but is willing to hold people in a space, a sacred space of relationship, where somehow this person who is on the dark side of the moon can get a little confidence that they can come around to the other side.”

In an upcoming show for December 20th, Jean Vanier, the founder of L’Arche, echoes the idea that physicality is more than just a manner of expressing emotion. It’s a way of connecting with other humans and fostering compassion and kindness within ourselves.

Now, as a father of two boys under the age of two, these stories help me recognize what I know is vital in my relationship with them, especially a 2-year-old. When Lucian is frustrated and all my other methods of diversion (i.e., talking about Curious George, showing him the moon, kissing his belly…) have failed, a simple gesture of kissing his feet or gobbling his toes makes him laugh or even coo. We begin again.