March 19, 2015

KRISTA TIPPETT, HOST: Alzheimer’s disease has been described as “the great unlearning.” But what does it reveal about the nature of human identity? What remains when memory unravels, and how might such insights help Alzheimer’s sufferers themselves? We’ll explore these questions with the psychologist Alan Dienstag. He’s led support groups with early Alzheimer’s patients as well as a writing group he co-designed with the novelist Don DeLillo. Alan Dienstag has observed the early stages of Alzheimer’s as a time for giving memories away rather than losing them.

DR. ALAN DIENSTAG: In the end, I think it’s that they were making a statement about who they are. And the moment that they were in was such that it has this kind of resonance that feels familiar to all of us on some deep level, which is that we don’t have an unlimited amount of time. And we’re going to run out of it. And when you watch these people, you see people who are running out of time. So there’s almost something heroic, like, “I’m going to tell you who I am before it’s too late. I’m going to tell you this story about picking lilacs from a tree with my mother.” Whatever it is. You know, a simple story like that somehow has this kind of — it’s elevated.

MS. TIPPETT: I’m Krista Tippett, and this is On Being.

[music: “Seven League Boots” by Zoe Keating]

MS. TIPPETT: Alan Dienstag is a clinical psychologist in private practice in New York. I interviewed him in 2009.

MS. TIPPETT: I would like to hear just a little bit about the religious — was there a religious or spiritual background to your life? I believe — did I read that your father was a cantor?

DR. DIENSTAG: Yeah, my father was a cantor. He’s retired now. And I grew up with a very large suburban synagogue family. And I had a religious education. So I’m — that’s very much a part of my life. That’s absolutely a lens through which I see these things. And, of course, memory is a big part of my tradition, the Jewish tradition.

MS. TIPPETT: Yeah.

DR. DIENSTAG: It’s very much all around in that respect.

MS. TIPPETT: And what interested you about psychology? How did that happen?

DR. DIENSTAG: You know, that’s one of those questions that I wish I had a great answer to. [laughs] And it’s very hard to say. I mean, I really just gravitated in that direction. It was the thing that I was most curious about.

MS. TIPPETT: And how did you then get into working specifically with people with Alzheimer’s disease?

DR. DIENSTAG: Well, I knew when I got into graduate school that I wanted to work with older adults. I absolutely knew that. And so I kind of gravitated in that direction. I moved in that direction. And when I got out of school, there weren’t kind of working opportunities for me to do that I was happy with. So I volunteered to run a caregiver support group for the Alzheimer’s Association. And that group was my education. I mean, I learned more about the illness and the experience of having Alzheimer’s disease and the caregiving experience from that group than any formal education that I had. And so once I started doing that, that kind of set me off on a track to work with people with Alzheimer’s disease. And from there, I started a support group for people in the early stages of the illness themselves.

MS. TIPPETT: Mm-hmm.

DR. DIENSTAG: That was not going on in the area where I was working. There were many caregiver support groups but not a lot of groups for people in the early stage of the illness.

MS. TIPPETT: And do you think — was there also a sense that, because this was a disease that had an inevitable decline, because there was no cure and not really even treatment and no sense of how that would come about, that patients were treated differently because of that?

DR. DIENSTAG: Well, yes. I mean, I think doctors are like everyone else. You don’t want to be associated with a losing cause.

MS. TIPPETT: Yeah.

DR. DIENSTAG: Right?

MS. TIPPETT: Right.

DR. DIENSTAG: I mean, it sounds harsh to say that. But I think that it’s just a human quality that we want to turn away from those things. We’re a little bit afraid of those things. You want to place your energies where you know that you can have the kind of maximum impact.

MS. TIPPETT: Mm-hmm.

DR. DIENSTAG: And so when you know that what you’re going to preside over is a slipping away, a degeneration, I think for a lot of people that’s a reason to just stay away from it.

MS. TIPPETT: And I suppose the idea was that, to the extent that these people with this disease might be cared for just at that purely human level, that would best be done by the people who knew them best.

DR. DIENSTAG: Yeah.

MS. TIPPETT: Rather than their doctors.

DR. DIENSTAG: I mean, I think there’s definitely some of that. I think — I can’t tell you how many times I’ve interviewed people whose internists upon — someone will start having trouble with their memory, and the first stop is kind of the family doctor. And when you’re talking about this generation, that may be someone who’s known them for 20 or 30 years and may even be the same age, right?

MS. TIPPETT: Right.

DR. DIENSTAG: Or close. I’ve often heard these stories of the doctor saying, “Well, I’m forgetting as well. Everybody forgets.” And in it, you can hear — or I can hear, anyway — a kind of reading between the lines that there’s a kind of denial there on the part of the doctor, a lack of curiosity at a crucial moment that’s being driven by that fear and not wanting to look, not wanting to see it. So I think that is a factor when we talk about Alzheimer’s disease. It is difficult to face. And I think that leads us to act in ways — in particular kinds of ways or not act in particular kinds of ways. And it’s part of the challenge of this illness.

MS. TIPPETT: So I wonder if you think about then — because you do work with caregivers but also with people with Alzheimer’s. So, you can’t cure them. You can’t heal them in any 360 degree way. How do you think about your role? What is the purpose of your work with them as a psychologist?

DR. DIENSTAG: Well, this is something that the writing group really changed for me. I mean, I think that my role is to help them remember, to help them experience themselves as remembering people. And that we’re talking — I think it’s important to specify — we’re talking about people in the early stages of the illness now…

MS. TIPPETT: Right.

DR. DIENSTAG: …who are cognizant of what’s happening, who are having real deficits, experiencing real deficits, but who can convey their experience and who can talk about it. And in those instances, that’s what I’m doing. I’m also encouraging them, in whatever way they are comfortable with, to not waste time and to take these opportunities that they have to say what they want to say to the people that they want to say those things to. It really slips away quickly. And you see it slipping away week after week. And I think part of the value of being diagnosed and going through the trouble to be diagnosed and sort of being identified, which a lot of people resist, by the way.

MS. TIPPETT: Right. Right. Because — mm-hmm.

DR. DIENSTAG: Yeah. Well, because of that sense of hopelessness.

MS. TIPPETT: It’s terrifying.

DR. DIENSTAG: Right. It’s precisely that, that you can manage it in some active way. And you can take a look at what lies ahead and think about what you want to do.

MS. TIPPETT: You’ve written that previously — prior to the writers group, you realized that if you thought about memory at all in terms of your Alzheimer’s patients, you thought about the loss of memory.

DR. DIENSTAG: Yes.

MS. TIPPETT: And the writer, Don DeLillo, who — it sounds like his mother-in-law was suffering from Alzheimer’s…

DR. DIENSTAG: Yes. Yes.

MS. TIPPETT: …which was his exposure to this. And he opened your mind up about that, didn’t he, into a different way.

DR. DIENSTAG: Mm-hmm.

MS. TIPPETT: Tell me about that.

DR. DIENSTAG: Well, I was running this group, this support group, for people in the early stages of Alzheimer’s. And I got a call from someone who ran the local chapter of the Alzheimer’s Association and who told me that there was someone who wanted to speak with me about a writing group for people with Alzheimer’s disease. And I immediately thought it was a bad idea.

MS. TIPPETT: OK.

DR. DIENSTAG: [laughs] I just did not — I didn’t see it. I didn’t see how it could work. I thought that it was going to be stressful for people too dependent on a kind of facility for writing. And I just didn’t think it was a good idea. I think I was kind of — I had blinders on. I think I was limited in that respect. And when I got on the phone with Don, I asked him what his idea was. And he said, “Writing is a form of memory, and perhaps it would be helpful for these people to have access to that form of memory as well.” And that really struck me because I never thought about writing that way.

MS. TIPPETT: Right.

DR. DIENSTAG: I never thought about different forms of memory, even.

MS. TIPPETT: Right. I mean, the mysterious thing about writing too — when I read this story about you is that you — at all times in our lives, you’re able to write something down you didn’t even know you knew. Right?

DR. DIENSTAG: Yes. Yes. Right. Right. Yeah.

MS. TIPPETT: And didn’t know you remembered. You didn’t remember in that mental way until you wrote it.

DR. DIENSTAG: Of course. Yeah. You think differently when you write.

MS. TIPPETT: Yeah.

DR. DIENSTAG: You don’t think the same way. If I ask you to think about something just in your head, it’s a different process and you use different parts of your brain.

MS. TIPPETT: Right.

DR. DIENSTAG: So it really is different. And so that just got me thinking about — well, if there are different forms of memory and we’re only using one of them in this way of working with these people, maybe that’s just too limited. And maybe we ought to really open up our minds a little bit to this and what the possibilities are that are inherent in this. And in thinking back to that as well, I think it’s really important for those of us in health-related professions to talk to people who are outside the bubble, as it were.

MS. TIPPETT: OK.

DR. DIENSTAG: You know what I mean? It took an artist to point out this truth about what I was doing and what I could do for these people. A writer understood that in a way that I was not going to understand, certainly not initially.

MS. TIPPETT: Something else that intrigued me that you’ve written about that and what you realized is that when you write something down, again, it’s not just a mental activity; you actually leave a physical mark on the world.

DR. DIENSTAG: Yeah.

MS. TIPPETT: You kind of entrust it. You give it over beyond yourself.

DR. DIENSTAG: Yeah. Yeah. And I mean, that was one of those things that until I was in the room — I don’t know, sometimes something happens and you realize how right it is and you never could’ve thought of it…

MS. TIPPETT: Right.

DR. DIENSTAG: …but there you are doing it. Right?

MS. TIPPETT: Right.

DR. DIENSTAG: And, yeah. I mean, there we were in the room. And they would write. And they would finish writing, and they would read. And then they would — I asked them to give me what they wrote every time we met. And I did that because I knew they’d lose it, or I was afraid they’d lose it. I thought there was certainly a good chance they’d lose it. So there was kind of a practical anxiety that was behind that technique, if you will. But once that pattern got established, I saw that there was an enactment of something else going on there that was very profound. And that was that they were turning their memories over to us. And these were people who might come back next week and not remember what they had written. Right? So it’s a very, very therapeutic activity in that respect as well. And it was comforting to them.

MS. TIPPETT: Yes.

DR. DIENSTAG: No one objected. No one said, “Oh, no. I want to hold onto it.” They turned it over.

MS. TIPPETT: You wrote of your own grandmother. You said, “As she neared the end of her life, my grandmother seemed to understand that if you can give something away, you don’t lose it.”

DR. DIENSTAG: Right. Right.

MS. TIPPETT: And that’s something that people were able to enact.

DR. DIENSTAG: Yes.

MS. TIPPETT: Which is actually taking a form of control, right?

DR. DIENSTAG: Absolutely. Absolutely. And it’s not a form of control that you can take if I sit you down and I say, “Well, I want to tell you something that I remember.” It’s different. There’s something about the verbal exchange, it just goes into the air. You may say to me, “Oh, I’m never going to forget that.”

MS. TIPPETT: Right.

DR. DIENSTAG: That doesn’t usually happen. But verbal memory — it’s different. It’s different. It’s invisible. It’s not tangible. And there’s something about writing that is enormously helpful in this context. You see it on the page. You know it’s there. You can turn it over to someone else for safekeeping. You know it lasts.

[music: “Size Too Small” by Sufjan Stevens]

MS. TIPPETT: I’m Krista Tippett, and this is On Being. Today: exploring the human and spiritual terrain of Alzheimer’s disease with psychologist Alan Dienstag.

[music: “Size Too Small” by Sufjan Stevens]

MS. TIPPETT: You realize when you see someone going through this that — all that memory holds. I mean, really, this is bigger than memory, isn’t it? But…

DR. DIENSTAG: Mm-hmm.

MS. TIPPETT: So, people lose their ability to present themselves. They lose their credentials, the way we’ve presented and defined our identity and worth in this culture like who I am, what I do.

DR. DIENSTAG: Absolutely. Yeah.

MS. TIPPETT: Or even people talking about all the things that get lost like not being able to drive and how that affects people’s identity.

DR. DIENSTAG: Yeah.

MS. TIPPETT: You’ve sent along some of the things people had written in your group, and they were just very striking. One woman describing how she tried to mask this, I suppose the early stages, and how very uncomfortable and painful it had become “to be in the world,” I think as you said, I think that’s the phrase. And then her relief at finding this group.

DR. DIENSTAG: Mm-hmm.

MS. TIPPETT: And then the man named Saul who said, “Having been a leader most of my life, I now find myself extremely dependent on others.”

DR. DIENSTAG: Yeah.

MS. TIPPETT: Which, in this culture especially, is a heartbreaking sentence.

DR. DIENSTAG: Yeah. He was a leader in the group. [laughs]

MS. TIPPETT: Was he?

DR. DIENSTAG: He was, yeah. He was a leader in the group. He was one of those people who — he was the last one to stop driving.

MS. TIPPETT: Right.

DR. DIENSTAG: Saul had a car, and he would drive to the sessions. And he continued in that way. He had that spirit, absolutely. But he also was very, very mindful of how dependent he was on his wife and on other people to continue living his life the way he wanted to live. Yeah. But they were so happy, and they are so happy to find one another. And, again, that’s the only way to break through the isolation. That sense of commonality is very, very powerful. I can’t give it to them, and their family members can’t give it to them. It’s only in finding other people who you recognize and who recognize you. That’s so important because isolation is ultimately the destination that this illness brings them to, right?

MS. TIPPETT: Right.

DR. DIENSTAG: It’s more and more and more isolation. So whenever it’s possible to be in a group — and not just any group because there are lots of ways in which people with dementia congregate. But they’re not conscious. You can be still alone in a group.

MS. TIPPETT: Right. Right.

DR. DIENSTAG: The thing about the writing group and the thing about the support groups is that they’re there. And we are talking about why they are there and who they are there. And that’s, by definition, what we’re doing. We’re meeting as a kind of group of people with something in common. They need that. They really need that.

MS. TIPPETT: I want to ask you — we invited listeners a couple of months ago to write to us if they had an experience with this illness. I don’t think we heard from anybody who has Alzheimer’s, but from people who love someone who has Alzheimer’s.

DR. DIENSTAG: Yeah.

MS. TIPPETT: And this is something I wondered about also when I was knowing people with Alzheimer’s. And I want to ask you — I think that some people, but certainly not all, by the later stages believe that the core of this person they love or who was a part of their family, that what is left is the core of this person. And there’s some people who say, “The gentleness, the kindness, the joy that was always at the heart of my mother is now there, and it’s a beautiful thing even as it’s hard.” But that’s not the story everyone tells.

DR. DIENSTAG: No. No.

MS. TIPPETT: And there’s also this hard edge to this, the paranoia, the violent behavior, the loss of boundaries that comes at different stages in the disease. I just want to ask you from the experiences you’ve had, how do you think about that? What is left after so much is unlearned?

DR. DIENSTAG: Mm-hmm. Yeah. It’s a really tough one because it’s hard to…

MS. TIPPETT: You don’t want to romanticize it, either.

DR. DIENSTAG: No. No. And there are people whose experience with their family members in this illness is just full of despair and pain. That happens. That happens. And I think that the history of the relationship is important here.

MS. TIPPETT: Yeah. I wanted to ask you about that.

DR. DIENSTAG: Yeah. I think that the story goes on in some form or another is what my observation is. I’ve seldom encountered circumstances where there’s an absolute discontinuity. You know what I mean? So the gentle person turns into a violent, paranoid person. And I think it’s also important to say that that’s not a common outcome for people with Alzheimer’s. But I think that to the extent that you can make some sense of it, it’s within the context of some relationship…

MS. TIPPETT: Of what has come before.

DR. DIENSTAG: …preceded that stage. But it’s hard. It’s hard because there are times when you look and you just don’t see — you can’t find anything. You just can’t find it. So where is the person? And then there are times when you or I could go and look and we would see nothing, and the family member is seeing something. Or the caregiver, the paid caregiver is there and seeing something and relating to a part of this person inside there that is still alive and still somehow sending out a dispatch that they hear.

MS. TIPPETT: Right. Right.

DR. DIENSTAG: And it’s extraordinary. It’s extraordinary when you see that. But a lot gets lost. I’ve had a woman recently describe it to me as invasion of the body snatchers.

MS. TIPPETT: Yeah.

DR. DIENSTAG: She said it’s like — she said it looks like him, but it’s not him. He’s not in there. Somebody took him out of there. And that’s her experience with her husband now. Very, very difficult.

[music: “Fok” by Olafur Arnalds]

MS. TIPPETT: Are you familiar with Gisela Webb? She’s actually a professor of religious studies who wrote just an essay that was quite beautiful about her mother’s struggle with Alzheimer’s…

DR. DIENSTAG: No.

MS. TIPPETT: …and how she drew on different texts, from the Tibetan Book of the Dead to Muslim texts and St. Augustine’s Confessions. And she called this “the great unlearning.” It felt very important for her to observe what was left. And it’s easy to put our finger, as we are, on memories go and lots of features of identity go — but she felt — I just want to know what you think about this — that intuition, feelings are still there, emotion is still there even when there are no words to put around it.

DR. DIENSTAG: Mm-hmm.

MS. TIPPETT: That intuition is there. She felt that humor is something that stayed with her mother.

DR. DIENSTAG: Yeah. Yeah. I think a lot of those basic things are still there. And so when you talk about feeling, I mean, feeling is there. And we express feelings nonverbally.

MS. TIPPETT: Yes.

DR. DIENSTAG: So, I’ve walked up to people who’ve just looked at me and started crying on an Alzheimer’s unit. Well, what are they crying about? I don’t know. I don’t know what they’re crying about. But I know that they’re sad, and I know that they’re crying about something. The same thing with laughter, absolutely. It’s there. I would go even a little bit farther than that. There are flashes, there are moments that I’ve had, where there’s wisdom that is apparent. And it hits you like a ton of bricks. This is an element that I think has a kind of spiritual component, in my experience anyway, with people like this.

MS. TIPPETT: Mm-hmm. Can you give me an example?

DR. DIENSTAG: Well, my favorite is I was working with a woman who actually first came to see me — she brought her sister to see me. Her name was Ann. And she wanted, actually, her sister to join one of the writing groups. And her sister wasn’t right for the writing group. And so I saw her, and they left. And about two years later, she came back, and she had been diagnosed with Alzheimer’s. And so I started to work with her, and she joined one of my support groups. She was in the group for a long time. And then it just became impossible for her to participate. The conversation was moving too fast. She just didn’t have the language. She couldn’t string together more than a sentence or two, and it just wasn’t working. And so she had to leave the group. Her husband, who was just extraordinarily devoted to her, really wanted her to maintain her connection with me. It was very helpful that I had known her before. And she would bring photo albums in. She would do a little tchotchke tour of my office.

MS. TIPPETT: Right.

DR. DIENSTAG: When it wasn’t really possible to talk about things, she would kind of walk around and we would look at objects. She was very taken by the birds outside the window. I mean, that was the kind of time that we spent together. And then even that became difficult. She was one of those people who started to kind of retreat into almost a mask-like blankness. It was harder and harder to access her. And so we were reaching the end of that time, and I was talking to her husband, telling him that I just didn’t think that it was a really fruitful way for her to spend her time and so on. So it was around that time, and I was going on vacation, and she loved the beach and I loved the beach and this was something that we used to connect about. And I said to her — as I was leaving, I said, “Ann, I’m going to the beach. I’m going to be away for a while.” And she smiled, and her face kind of lit up. I said, “What do you love about the beach?” She kind of drifted away, as she did, and she got very quiet. And again, I waited. And I thought, well, she can’t really answer that question. And she turned to me and she said, “There’s some kind of music that lives there.” And I thought, “Oh, god. That’s the best answer.”

MS. TIPPETT: Right.

DR. DIENSTAG: That was just a wonderful answer. And not a summer has gone by that I haven’t thought of that at some moment at some beach. So to me, that’s like a prayer. Where does it come from? In the A.J. Heschel sense of prayer, this sense of wonder, this sense of that place between knowing and not knowing and the mystery of things. So that’s in there too. And you never know when it’s going to kind of come out.

[music: “A Greatness At the Cost of Goodness” by Saxon Shore]

MS. TIPPETT: You can listen again and share this conversation with Alan Dienstag through our website, onbeing.org. I’m Krista Tippett. On Being continues in a moment.

[music: “A Greatness At the Cost of Goodness” by Saxon Shore]

MS. TIPPETT: I’m Krista Tippett, and this is On Being. Today, we’re exploring some of the human and spiritual terrain of Alzheimer’s disease, what it reveals about the nature of memory and identity, and what remains when memory is gone.

I came into this conversation with my own formative experiences in this area. While I was studying theology, I spent 18 months doing fieldwork as a chaplain on an Alzheimer’s and dementia floor of a home and hospital for the elderly. My guest, Alan Dienstag, is a New York-based psychologist. He was an early practitioner to integrate support groups into his work with Alzheimer’s patients. He also created a writing group for early Alzheimer’s patients together with the novelist Don DeLillo.

MS. TIPPETT: Something you wrote — I think this is you making sense of what you learned, just continuing what I think you were just saying. You said someone had said to you, “I feel like a picture that is fading.” And you note that’s true for all of us. And you wrote: “Watching the group members in their struggle to remember right and read their work is a moving experience on many levels. One of these is surely our awareness that the picture is fading along with the sparks of recognition. This awareness lends a poignancy and triumph to the work with which one can identify. We all know what fading is like, and we all know that our fate is not so different from theirs. The triumph is temporary, it is of this moment, but it’s the triumph of life over death.”

DR. DIENSTAG: Yeah. Yeah. You know, when we first listened to the work that people were producing in the writing group, I was really kind of astonished by how profound it seemed. And I sort of couldn’t believe it. Like, I thought, “Well, what is this? Are they great writers? Do these people have a particular talent for writing? What is actually going on here?” And in the end, I think it’s that they were making a statement about who they are, and the moment that they were in with such that it has this kind of resonance that feels familiar to all of us on some deep level, which is that we don’t have an unlimited amount of time. And we’re going to run out of it. We’re going to run out of it. And when you watch these people, you see people who are running out of time. So there’s almost something heroic like, “I’m going to tell you who I am before it’s too late. I’m going to tell you this story about picking lilacs from a tree with my mother.” Whatever it is. You know, a simple story like that somehow has this kind of — it’s elevated. It’s elevated by the circumstance. I think Don in his book…

MS. TIPPETT: Don DeLillo.

DR. DIENSTAG: Yeah. Yeah. He writes about the group: “They summoned the force of final authority. No one knew what they knew here in the last clear minute before it all closed down.” He was writing in this book that he wrote called Falling Man about a group, not unlike the group that we ran, a writing group for people in the early stages of Alzheimer’s disease. But I think that that’s what gets conveyed through the writing. And it’s remarkable how it reads in the rereading when you encounter it. And I think we’re not that different from them. We’re not.

MS. TIPPETT: There’s that one line from one of the people in your writers group: “I can remember picking a fig from a tree in Athens. My lover watches me with delight.”

DR. DIENSTAG: Yeah.

MS. TIPPETT: That’s two sentences that tells a story, that paints such a vivid picture.

DR. DIENSTAG: Yes. Yes. Now, you have the page in front you, right? You see the effort there, also, in that page.

MS. TIPPETT: Oh, where she’s crossed it out and started over again. Yes.

DR. DIENSTAG: She’s crossing it out. And she can’t quite get the spelling right.

MS. TIPPETT: Right.

DR. DIENSTAG: The letters are backwards. And when she read that, it was like you just wanted to stand up and applaud.

MS. TIPPETT: Yeah.

DR. DIENSTAG: First of all, because it was so lovely and — yeah.

MS. TIPPETT: Something that really formed me and made me think about what a kind of linear, verbal idea we have of memory and communication. And certainly, I’m completely word-oriented. There is body memory that I think we’re learning more about in the 21st century even than we knew a couple of years ago. How eye contact and touch and just presence and indulging simple pleasures like — there was one woman who I could wheel her outside to sit in the flowers, and she would be so sad and withdrawn when I arrived, sitting in that common room. And she would come to life. I could just imagine what stories were behind that. And, I mean, I think that was also about body memory. I’m imagining this woman who wrote about picking the fig from a tree in Athens. If you could somehow take her to that place in Athens, even long after she could write those sentences, she would feel that story.

DR. DIENSTAG: I think she did. I think she did feel that story when she wrote that. And I think she felt that story when she shared it with us. She was delighted to share that with us. It’s still with us. She’s gone. She’s gone. She’s been gone for a while. And here we are, talking about her lover and that fig tree.

MS. TIPPETT: And that delight.

DR. DIENSTAG: And that delight. I just — for me, there’s a deep sense of satisfaction in that and comfort in that.

MS. TIPPETT: And now we’re talking about it on the radio.

DR. DIENSTAG: And here we are. Yeah. Yeah. It’s remarkable.

MS. TIPPETT: I want to ask you this: if you found out today that you or your spouse were in the early stages of Alzheimer’s, what would be your reaction?

DR. DIENSTAG: Hmm. I’d be very sad. I’d feel a sense of grief and mourning for what I knew that I was going to lose. I think that’s where I’d be at the outset of it.

MS. TIPPETT: Would that be very different from how you would’ve reacted if you hadn’t done all this work?

DR. DIENSTAG: Yeah. I don’t think I’m as scared of it, actually, as I used to be. I’m not scared of it, I don’t think. Now I think that before I worked with people with Alzheimer’s, I mean, before I was immersed in it in this way, I would’ve been much more frightened.

MS. TIPPETT: And why are you not as scared?

DR. DIENSTAG: You know, I don’t know. That’s a good question.

MS. TIPPETT: See, I haven’t done as much as you have, but I felt exactly the same way after I had spent that year and a half with people with Alzheimer’s. You do hear about how this is the disease that people in the United States are more scared of than anything else. This is what no one wants to happen to them.

DR. DIENSTAG: Yeah.

MS. TIPPETT: But you don’t feel that way, having done this work.

DR. DIENSTAG: No. No. I find other things much scarier. I mean, pain — we could go down the list, I’m sure we could.

MS. TIPPETT: Yeah.

DR. DIENSTAG: But, no, I don’t. It’s tragic, so the grief would be hard to take. But I’m not afraid. It slips away, you know? It slips away. And I guess the other thing that you learn is that for the people who go through it, they’re not generally aware of it on this level. I had this experience doing a workshop, and there were people with Alzheimer’s in the room. There were about 20 people in the room, and we were kind of going around in a circle. And people with early Alzheimer’s were talking about their lives and what they do to kind of give their lives meaning, find stimulating things to do, and so on. This man started talking about his experience as somebody with early Alzheimer’s, and he was painting a very kind of benign picture of it all. He said, “Well, you know, it’s difficult not to be able to remember. But I get up and I can do this and I can do that.” Basically he was just saying he’s fine, he’s OK. And over his shoulder, sitting behind him, was his wife. And she was crying. She was crying. And I knew just how much he’s lost, how much she has lost.

MS. TIPPETT: Right.

DR. DIENSTAG: But there he was. He wasn’t uncomfortable. He really wasn’t. And so I think we project our feelings onto them, and we assume that they are suffering some terrible thing. But in fact, that’s not necessarily the experience of it.

[music: “Smdm” by L’Eixample]

MS. TIPPETT: I’m Krista Tippett, and this is On Being. Today: exploring the human and spiritual terrain of Alzheimer’s disease with psychologist Alan Dienstag.

[music: “Smdm” by L’Eixample]

MS. TIPPETT: This is kind of a huge philosophical question, but how do you think differently about the distinctions between, or overlap between memory, thought, consciousness? I mean, is consciousness the same as memory? Some people call this “a demise of consciousness.”

DR. DIENSTAG: Mm-hmm.

MS. TIPPETT: And maybe, in this, I would also ask you how — when we first began to speak, you talked about memory and Jewish tradition and your religious sensibility. I mean, how do you understand these things differently because of your experience with Alzheimer’s?

DR. DIENSTAG: Mm-hmm. I guess, I almost hesitate to say this because I feel like it sounds corny, but I guess I have to start here because that’s the first thing that comes to mind. When you’ve seen the unraveling of this consciousness that we have — and that is definitely a word that I would use — when you’ve seen the unraveling from beginning to end, you can’t help but recognize what a miracle it is, this mind that we have. This conversation that you and I are having, the fact that I’ll leave here and I’ll just kind of put myself out there into the world and think about a hundred other things. So I have come away, certainly, with a renewed appreciation of that. And I guess that does sound a little bit like the near-death experience and now I really appreciate life. But on the other side of the coin, I realize how ungrateful we are. We don’t notice it, really. I mean, I don’t want to generalize too much.

MS. TIPPETT: No, it’s true.

DR. DIENSTAG: But I think we tend not to notice it unless it doesn’t work. And then we get all bent out of shape, “Oh, I can’t remember this. I can’t remember that.” But from moment to moment, it’s a miracle. It’s really a miracle that all of this works and that it works in the way that it does and that it has the richness that it does, that it takes in so much and that our internal lives and the lives that we can build as a result of what’s inside are so rich. So I absolutely have been touched in that way. It’s also influenced the way I think about God. We’re taught that we’re created in the image of God. And I was taught that, and I accepted that. So what does that mean when you see things like this? Where I’ve kind of landed with all of that is that if it’s true that we are created in God’s image, then God has Alzheimer’s as well.

MS. TIPPETT: [laughs] Why do you say that?

DR. DIENSTAG: That’s part of it. It’s not just the miraculous stuff. It’s all of it. It’s not just the awe-inspiring beautiful things. It’s the brokenness. It’s the cruelty of this. All of it, all of it. The way I see it, it has to be — it can’t just be one or the other. It has to be all of it if that’s true. And that’s OK. That’s OK with me. And I guess it kind of also has reinforced my own sense that what you do with that is — and that our task is to just try and repair as much as we can. And that’s certainly part of my tradition, and it’s a part of my tradition that speaks to me. The world is broken. And people get broken too in the course of their lives. And that’s the way the world is. It’s not because somebody made it that way or someone’s being punished or anything like that. It’s just part of what’s been bequeathed to us along with everything else. So those are some of the ways in which those ideas intersect with Alzheimer’s, for me.

MS. TIPPETT: There’s all that language in the Hebrew Bible about God remembering, right? “God remembering…”

DR. DIENSTAG: Yeah.

MS. TIPPETT: Does that have different connotations for you now?

DR. DIENSTAG: Yes.

MS. TIPPETT: Which also means that God forgot, doesn’t it? [laughs]

DR. DIENSTAG: Absolutely. That’s what I mean. You can’t remember — you can’t only remember. [laughs] If you’re remembering, then there’s the absence of remembering also, right? And so, yeah. I think there’s probably a whole theology embedded in that. I mean, bad things happen when God forgets us or when we forget God or something. But I — it is very striking to me how much there is about memory certainly in the Old Testament, in the Hebrew Bible. It’s kind of the pivot point for so many things. And I think that makes sense. It’s a very fundamental human characteristic.

MS. TIPPETT: I do remember how striking it was — and I’ve since read other accounts of this — when I was working on the Alzheimer’s floor — how people who could not string a sentence together, I mean, who maybe didn’t even ever talk, the chaplain would come in and they would say the Lord’s Prayer, right? Or they would sing a hymn.

DR. DIENSTAG: Yeah. Yeah.

MS. TIPPETT: Or, I don’t know, the 23rd Psalm. And the words came out perfectly.

DR. DIENSTAG: Yeah.

MS. TIPPETT: There was something so mysterious about that, that these things seemed to be rooted so deep down. And they were indestructible when nothing else seemed to be out of bounds. I mean, have you experienced that and how do you explain that?

DR. DIENSTAG: Sure. Well, they’re well — I mean, the scientific term, they’re well-learned, right? That’s how people describe that. That you’ve learned something so well, that you’ve repeated it so many times, it’s almost like muscle memory. Right?

MS. TIPPETT: Right.

DR. DIENSTAG: It doesn’t require this kind of conscious effort to repeat, and so there it is. But I still think it’s mysterious whether you explain it that way or not. There is something that is mysterious about that. And it highlights the ways in which memory is always a creative process. To me, that’s the other thing that I take away from that. So that we’re always constructing it. The internal experience is one in which we kind of dip into the memory bank and pull out the memory in its full form, right?

MS. TIPPETT: Right.

DR. DIENSTAG: But the more we learn about this, the more we realize that, in fact, it’s scattered. It doesn’t exist in one place. It gets pulled together.

[music: “Lokadu Augunum” by Ólafur Arnalds]

DR. DIENSTAG: I was working with a woman whose husband was in a nursing home. And there’s that period of time when people with Alzheimer’s begin to not recognize their family members. And it’s wrenching and it’s painful and it’s awful. It’s just awful. And she was in that period of time, and so it would happen every so often. The first time it happened, she came back to me in kind of a panic and just — she was distraught and said that she didn’t want to live anymore if he wasn’t going to recognize her. What started to happen was that she would go and see him, and the first thing she would say was, “Do you remember who I am?” And I was trying to convince her and trying to help her to kind of back off of that.

MS. TIPPETT: Right.

DR. DIENSTAG: I was suggesting to her that there are other ways that she could see that he recognizes her. And there are, in fact. Even when someone can’t answer that question, you can see on their face, you can see in their body language. There are lots of ways that you can tell. But he got to a certain point where he just couldn’t answer the question. And one day, she went in and she asked him, and he looked at her and he said, “I don’t know who you are, but I love you.” And I thought, oh, he thought of the right answer.

MS. TIPPETT: He did. He also understood what she needed to hear.

DR. DIENSTAG: He totally understood. And, again, I just — that was very wise. That was very wise. And on another level, I thought a lot about it, and I thought, what endures? What endures? Does the name endure? Does the recognition endure? To me, that’s a statement about that love is enduring, actually. Right? That you can hold onto that sometimes even after you’ve lost all the other things. So that one has stayed with me. I mean, some of these things just feel to me like principles for living a good life. Right?

MS. TIPPETT: Right.

[music: “Love Is Here to Stay” by Louis Armstrong & Ella Fitzgerald]

MS. TIPPETT: Alan Dienstag is a clinical psychologist in private practice in New York.

[music: “Love Is Here to Stay” by Louis Armstrong & Ella Fitzgerald]

MS. TIPPETT: In closing, here are some lines from the poet Sean Nevin, who has also led writing groups with Alzheimer’s patients and lived through his own grandfather’s struggle with this disease. This is an excerpt from his collection of poetry about those experiences, Oblivio Gate.

“The moon
is the rice-paper lantern
left burning in the garden

long after the last house light
is put down.
Wind sweeps its circles

across the empty lawn
and back again.
All night

I search you
for signs of recognition–
Solomon? Solomon?

I float your name
out into the darkness:
a word, a flame,

a silver prayer kite rising,
rice paper,
balsa,

twine for the rigging,
remember this.
Remember.”

[music: “Pilgrim” by Balmorhea]

MS. TIPPETT: You can read the text of Sean Nevin’s poem, listen to this episode again, and share it all at onbeing.org. You can also stream it on your phone through our iPhone and Android apps or on our fabulous new tablet app.

[music: “Pilgrim” by Balmorhea]

MS. TIPPETT: On Being is Trent Gilliss, Chris Heagle, Lily Percy, Mariah Helgeson, Nicki Oster, Michelle Keeley, and Selena Carlson.

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