Anne Strainchamps (00:00):
It's To the Best of Our Knowledge. I'm Anne Strainchamps.
New Speaker (00:04):
Millions of people are caring for somebody with severe memory loss, trying to find ways to connect. One of the best ways anybody's found is music.
Shannon Henry Kleiber (00:14):
My mom is 89 now and was diagnosed about two years ago with what they call late-onset Alzheimer's.
Anne Strainchamps (00:29):
This is our producer Shannon Henry Kleiber. Today's show begins with her discovery of the unexpected power of a song.
Shannon Henry Kleiber (00:45):
When my mom started memory care I looked for ways to try to engage her more. This thing about having Alzheimer's and living in the moment is you have all this time but you're not sure what to do with it.
Shannon Henry Kleiber (01:02):
Mom, are you ready for an interview?
Speaker 3 (01:04):
I don't know.
Shannon Henry Kleiber (01:06):
Okay. Well, we can stop any time you want.
Speaker 3 (01:09):
Shannon Henry Kleiber (01:11):
She doesn't have long bursts of communication. Are you getting a little tired?
Speaker 3 (01:23):
Little bit, not a lot.
Shannon Henry Kleiber (01:23):
Two of the things I tried to do were to bring her some art supplies and do some painting or drawing with her. And then I bought her a very simple music box that just had an on or an off. She wasn't really interested in either of those. She just really couldn't concentrate on the pencils and brushes and even the simple on and off switch.
Shannon Henry Kleiber (01:48):
Do you have a favorite song that you like?
Speaker 3 (01:54):
Oh, all of the songs.
Speaker 3 (01:58):
We usually sing an Irish song for this beautiful lady.
Shannon Henry Kleiber (02:03):
One day when I was visiting, I came into this group of memory care people at Oakwood and they were playing some music.
Shannon Henry Kleiber (02:17):
And I thought, "Okay that's really nice, they do a lot of activities." They take the memory care people out on walks and things like that, and everyone was singing, and everyone was dancing.
Shannon Henry Kleiber (02:42):
There were people I didn't know could get out of their wheelchairs were dancing. There were people I didn't know could talk were singing every word of every song.
Shannon Henry Kleiber (02:54):
There are a lot of people there who I know are able to maybe say one word. There is a woman there who has a stuffed cat and I've heard her say, "Cat." That's all I've heard. My mom doesn't talk a whole lot either. I was amazed.
Speaker 3 (03:12):
Can we sing it again? One more time.
Anne Strainchamps (03:36):
What is it about music that produced this small miracle and does again week after week? Shannon went back to find out.
Shannon Henry Kleiber (03:52):
So you get the same group together every week.
Speaker 3 (03:55):
Yeah. Last week, it was slimmed down because they were playing BINGO.
Shannon Henry Kleiber (04:00):
This is Mary. She is the woman who puts together this group every week.
Speaker 3 (04:06):
I am 95, almost.
Shannon Henry Kleiber (04:09):
Speaker 3 (04:10):
Shannon Henry Kleiber (04:10):
Speaker 3 (04:11):
Yes, well I'll be 95 in December.
Shannon Henry Kleiber (04:14):
Oh my goodness!
Speaker 3 (04:14):
And so I get a little tired once in a while.
Shannon Henry Kleiber (04:18):
She thinks of it as her calling in a lot of ways. Music has always been an important part of her life and she loves to bring together people who might not otherwise have a chance to sing together.
Speaker 3 (04:36):
Okay, the next one, 5 foot 2 eyes are blue.
Speaker 3 (04:45):
Well as I say, I've been singing since I was a little, little child. My father was a choir director and soloist. And my mother sang and played the piano. We were brought up with music, and it's fun. We would get in the car and one of us would start a song and we'd all sing it. It just was part of our life.
Shannon Henry Kleiber (05:18):
It's probably about 15 or 20 people. They came in, in their wheelchairs and walkers. There's walker parking as we were coming in. They sing all these American song book standards. Moon River, Side by Side, Edelweiss, all these really lovely, beautiful, familiar songs from their era. But it's almost like something lights up in people. It's waking people up, do you think?
Speaker 3 (06:04):
Yes, I think so. Do you?
Shannon Henry Kleiber (06:06):
Christa, do you think so? This is Christa Iverson. She's the life enrichment coordinator at Oakwood Village.
Christa Iverson (06:12):
Even if we're trying to work with somebody, getting them to go somewhere, you start singing, "You Are My Sunshine" and they'll come along with you. It's just amazing how well it works. So if you think back to what you listened to during that time, you think of when you hear that song on the radio, where does your mind go? And where does your body move? You'd revert to that time period.
Speaker 3 (06:46):
Well I was singing. What was I singing today? The one about my name is Yon Yonson, I come from Wisconsin. I work in the lumber yard there. And I was singing it to my little great grandson who was with me and this man was standing in the garden, there and he started singing with me.
Speaker 3 (07:07):
And, yeah. And we sang the whole thing.
Anne Strainchamps (07:10):
Is there research behind that? Is there a reason anybody knows that those are the songs that work for them?
Shannon Henry Kleiber (07:17):
What I have heard from researchers is that the music of our late teens to late twenties is the music that stays with us. And it's imprinted on us. It's been found that these songs can trigger memories and wake people up in many ways.
Anne Strainchamps (07:36):
I'm just imagining the future, when I'm in nursing home and we're all rocking out to Patty Smith or The Ramones.
Shannon Henry Kleiber (07:43):
Right, so for my generation, U2, The Replacements, The Cure, David Bowie, and will I remember all those songs?
Anne Strainchamps (07:51):
Shannon Henry Kleiber (07:53):
Anne Strainchamps (07:55):
Wow, do you think there are a lot of nursing home programs like this?
Shannon Henry Kleiber (07:59):
Yeah, so it's proven to work and what's really become a big deal now is this personalized music in memory and music therapy.
Anne Strainchamps (08:09):
Wow, personalized music therapy.
Shannon Henry Kleiber (08:11):
Yeah, so at Oakwood there's a music therapist and she asked us what kind of songs were important to my mom and my dad and I went through some songs that we thought that she'd really like. And she'd always liked Frank Sinatra, things from Sound of Music, 1950's and 60's kind of music. And then a couple days later, they had put on an iPod about 57 songs.
Shannon Henry Kleiber (08:38):
Can you hear that?
Speaker 3 (08:39):
Shannon Henry Kleiber (08:39):
Do you like it?
Speaker 3 (08:43):
Shannon Henry Kleiber (08:43):
What song is that? It sounds familiar.
Speaker 5 (08:46):
It sounds familiar...
Shannon Henry Kleiber (08:47):
She always loved to sing.
Shannon Henry Kleiber (08:53):
She's a pretty religious person and would always say, "Singing is twice praying." Which is why hearing her sing the entire "You Are My Sunshine" is so surprising and wonderful to me because it's the most I hear her voice.
Shannon Henry Kleiber (09:12):
I loved hearing you sing, "You Are My Sunshine".
Speaker 3 (09:15):
Yeah, that was good.
Shannon Henry Kleiber (09:16):
Do you like that song?
Speaker 3 (09:17):
Yeah, that was very good.
Shannon Henry Kleiber (09:20):
Do you remember singing that song?
Speaker 3 (09:21):
Shannon Henry Kleiber (09:22):
When you were little?
Speaker 3 (09:24):
Shannon Henry Kleiber (09:24):
You knew every word.
Speaker 3 (09:26):
Yeah, I guess that's because my mother and father sang the song to me.
Shannon Henry Kleiber (09:33):
Speaker 3 (09:34):
Shannon Henry Kleiber (09:42):
It does trigger other memories. I've heard other people say, "Oh, I remember dancing to this song" or, "This reminds me of driving in a car." It brings up other memories that I don't think we'd otherwise get to.
Anne Strainchamps (10:02):
That's really sobering. Partly thinking about how many of us, how many people are maybe going to wind up like the people you visited that day. Alzheimer's is on the rise.
Shannon Henry Kleiber (10:17):
Yeah, the statistics are pretty shocking, actually. There are 5.8 million people living with Alzheimer's Disease right now in the country and by 2050 that number is projected to rise to nearly 14 million. And it's the 6th leading cause of death in the United States. So, unless a cure is found, it is really something that, even now, it's affecting 1 in every 3 senior citizens. It's pretty pervasive. It's an epidemic and it's something that if you don't know someone who's affected by it, you probably will.
Speaker 6 (11:02):
Anne Strainchamps (11:20):
You said that when they sing, it looks to you like they wake up. What does that mean to you? What do you see?
Shannon Henry Kleiber (11:29):
I do think of Alzheimer's as being something where it's almost like living the same moment over and over and over and what I've seen music do is it takes people a little bit out of that moment and gives them another dimension. It's like a light's turned on inside. You walk in, and you see a lot of people in memory care in their wheelchairs and they're just waiting for something to happen, I think. And then the music starts and they physically get up, they start singing, you see sparks in their eyes. It really is something that ignites something familiar and joyful within.
Anne Strainchamps (12:16):
I have to say, hearing a group of memory patients singing about lingering in the twilight is almost unbearably poignant and you and I reached for Kleenex about the same time. And yet, you say they're really joyful and happy.
Shannon Henry Kleiber (12:32):
It is hard. It's definitely hard. They call Alzheimer's the 'long goodbye' because people are slipping away so slowly. And maybe that's why the music seems so especially joyful because these are some of their last moments of joy.
Speaker 3 (13:11):
There's a place for us. God made a place for us. And He... That's it.
Shannon Henry Kleiber (13:25):
But what you're saying is why it's so meaningful.
Speaker 3 (13:30):
Because we're not put aside. We can still contribute to the world. Whatever we do, there's a place for us.
Shannon Henry Kleiber (13:44):
And that's what music does?
Speaker 3 (13:45):
Yeah. It does for me, anyway.
Anne Strainchamps (14:01):
That was Mary Marohl, and some of the other residents at Oakwood Village Retirement Community in Madison, Wisconsin. Shannon Henry Kleiber visits her parents there often.
Anne Strainchamps (14:21):
I still have so many questions. Where in the brain are those musical memories stored? And how is it that those memories can still be there when Alzheimer's or dementia have wiped out almost all the rest? We'll talk about the research, next.
Anne Strainchamps (14:40):
It's To the Best of Our Knowledge from Wisconsin Public Radio. And PRX.
Anne Strainchamps (14:51):
The person who did more than almost anybody to popularize research on music and memory was the late neurologist, Oliver Sacks. He was famous for stories of people with brain disorders. From Parkinson's disease to Autism. And he wrote a lot about neurological mysteries, like the one we've been talking about. The way a song can activate parts of the brain that language can't even touch. Back in 2007, he told Steve Paulson about one of his patients.
Oliver Sacks (15:19):
Tony was a surgeon in his early 40's, very robust and athletic and extroverted with very little interest in music. And, one day, this was in 1993, he was on the phone. It was an outside phone. A storm approached, a bolt of lighting flew out from the phone, hit him in the face, gave him a cardiac arrest, and along with this an out of body experience. He was resuscitated and he seemed pretty much himself, except 2 or 3 weeks later, he got what he called, "a sudden insatiable passion to hear piano music." And then to play piano music, and then to compose piano music. And in the course of about 48 hours, he really became transformed. He became possessed by music. That was his term. He started getting up at 3 in the morning and he got a piano, he got a piano teacher, he learned to transcribe, he was at music when he came back from his surgery. He said his wife wasn't displeased and basically this has continued.
Steve Paulson (16:24):
And there was nothing in his background that would suggest this love of piano music?
Oliver Sacks (16:29):
Really, very little either on the musical side, or, for that matter, on what he likes to call, "The spiritual side" because he now feels that this was a providential event. A divine intervention and that, in a sense, the music comes from heaven and he has a mission to bring it to Earth. And so there was also a sudden change in character and a mystical element crept in.
Steve Paulson (16:53):
You write about other cases where music is profoundly therapeutic. For instance, you have worked with people with Parkinson's and Alzheimer's diseases and these people may not be able to talk easily, they may not even be able to move very well but, often, those problems seem to disappear when they listen to music or play music.
Oliver Sacks (17:12):
Yeah, well this is where things started for me, as a physician. And, more than 40 years ago, when I saw the patients whom I later described in "Awakenings" and these people were almost transfixed with extremely severe Parkinsonism, catatonia, these sleepy sickness people. But, music could liberate them in the most remarkable way. They could dance, they could sing, they could move normally, they could think normally, while the music lasted. Music can have an amazing effect in recalling deeply demented people to life and music has its special uses in aphasia in people who've lost language because even though they may not be able to speak, they're usually able to sing. And, often to recover the lyrics of a song.
Steve Paulson (17:58):
That's fascinating. So, you're suggesting, then, that the part of our brain that deals with language is a different part than deals with singing, for instance.
Oliver Sacks (18:05):
Oh, yeah, absolutely. This was really discovered right back in the 1860's when it was found that aphasic children could sing. And, even though they might be damaged in the left hemisphere of the brain, causing the loss of language, singing seemed to be associated with the right hemisphere of the brain. Although, in general, there's no music center in the brain. There's 20 or 30 different systems or networks in the brain involved in listening to music or imagining music or reacting to music. And I think this is why music is so robust and even when speech may be lost, other parts of the brain are still there.
Steve Paulson (18:46):
Well, you say something astonishing in your book - that neuroscientists can actually spot a professional musician just by looking at the image of their brain.
Oliver Sacks (18:55):
Oh, yeah I was very fascinated by this and I wouldn't have believed it if I had not seen this myself. This is beautiful work, especially done by a man called Gottfried Schlaug. And he found that in many different areas in the corpus callosum, this great bridge that's between the two hemispheres and the auditory parts of the brain and in the motor parts of the brain and in the visuospatial parts of the brain, there was a real enlargement of gray matter in musicians brains. And this is sometimes visible to the naked eye. So that, although you can't look at a brain and say, "That's the brain of a mathematician or visual artist", you can look at a brain and say, "This is probably the brain of a musician."
Steve Paulson (19:40):
So, do you think there's different brain anatomy? It's something that's changed as people hone their talent for music? Or is it something that some people are just born with?
Oliver Sacks (19:49):
I'm sure both. And sometimes it's difficult to tease out because people who are naturally very gifted are likely to have intensive early musical training but there have been studies with people who have had, say, a year of intensive violin training, the Suzuki Method, looking at their brains before and after a year and you can see very clearly the changes which have occurred.
Steve Paulson (20:12):
You write about another remarkable case study. The English musician, Clive Wearing. Explain what happened to him.
Oliver Sacks (20:21):
Clive was a very gifted musician and musicologist, a pioneer in Renaissance music, when, in 1985, he had a devastating brain infection, a herpes encephalitis, which especially destroyed some of the memory systems in his brain. So, he developed a profound amnesia so much so that he would lose everything in a few seconds. If you came in the room, he would greet you, 10 seconds later, he would be a stranger and he'd greet you again. And, along with this, there was a loss of many memories from his past life. A great deal of his autobiography was gone. So, he had lost what neurologists call 'event memory' or 'episodic memory'. He had lost much of his knowledge of the world but his ability to perform music and even to conduct a choir or an orchestra at a masterly level was absolutely unchanged.
Steve Paulson (21:21):
So, he could remember those musical pieces. Somehow, those memories came back to him -the musical memories.
Oliver Sacks (21:27):
Well, let's put it this way. The power of musical performance, the music came back to him. If you showed him a Bach fugue, the printed page, he'd say, "Never seen it before." But if you just start him on the first note, he would play the whole fugue perfectly and then, in some amazement, discover that he knew it. So, he possessed a huge memory of which he was unaware. Sometimes called 'implicit memory'. And when he was performing music, improvising of the organs, singing, conducting, he seemed utterly himself. Gifted, charming, full of sensitivity and intelligence. Seconds later, he'd have no memory of this and he'd be confused and disoriented and frightened. So, there was this day and night difference between the two Clives.
Anne Strainchamps (22:31):
That was the late neurologist, Oliver Sacks talking with Steve Paulson. Sacks' many books include, "Awakenings" and, "Musicophilia".
Anne Strainchamps (22:43):
Speaking of musical memory, there are other famous cases of professional musicians who lost their memories but could still perform. For instance, there's this wonderful film about the country music star, Glen Campbell's goodbye tour. He had Alzheimer's, he barely knew where he was or what day it was, but he could still play the guitar and sing. He even recorded one last song called, "I'm not gonna miss you".
Anne Strainchamps (24:10):
The documentary is called, "Glen Campbell: I'll Be Me". Music made his final days a lot happier. But, it's not just professional musicians who can benefit from making music late in life. After a 40 year career as a psychologist, Francine Toder decided to start playing the cello. Her own experience convinced her that music and, in fact, all the arts may be the best way to stimulate the brain and improve well-being late in life. Her advice: It's never too late to learn to play an instrument. Steve Paulson, who is edging up on 60 does not paint, draw, sculpt, or remember how to play the piano, wanted to know more.
Steve Paulson (25:01):
Francine, you say it's in our vintage years that we can best embrace the arts. Why do you think that?
Francine Toder (25:10):
Unless you were early identified as gifted as a child, chances are that you played an instrument for a little while and then life got in the way of continuing. Most kids do give up whatever it is that they've been playing by the time they get to school or get to high school or it isn't cool to carry a violin case on the bus. And some people never get started. So, often, it needs to wait until the vintage years. This is a period in life where there is less demand on your time, where your focus can be better, there's a decrease in certain hormones, which we can talk about later, that actually do affect your ability to concentrate and focus and feel peaceful. So, often, it needs to wait until this time frame when people go, "Gee, I once enjoyed playing the piano. Maybe I should try that again." Or people say, "I always wanted to play the piano. Do you think it's too late?"
Steve Paulson (26:13):
Yeah. Now, you were talking about this from personal experience. You started playing the cello late in life.
Francine Toder (26:19):
Yeah, at 70. Yeah I was contemplating retiring and I was thinking about a couple of different things that I could do. I'm one of these people that need structure. I'm really not comfortable imagining a retirement that has nothing in it but time and space. And, I thought, "Well what is it that I've never done that I would really enjoy?" And one of my inspirations was somebody who was a professional cellist and I just love the sound of the cello and I just thought, "Why not?" So, I did a lot of research and discovered that, in fact, you could really learn to play the cello at 70 and I decided that I was going to write a book about other boomers and older adults who really wanted to do something different in the arts, but felt they needed permission because there aren't too many good role models.
Steve Paulson (27:15):
So, were you intimidated when you first started trying to play?
Francine Toder (27:19):
Well, I was intimidated before I started to play. My kids rolled their eyes and the professional musicians that I knew patted me on the head and said, "Well, you can give it a try but the recorder would probably be a better idea." Because it's a complex instrument. String instruments are, and I thought, "But, why not?" And the more I heard that, probably I couldn't do it, the more I wanted to. And, of course when I got the cello, I actually rented a cello first. I took it home and thought, "Well, I'll just start playing it." And, of course, no music came out and, not that I should have been surprised, but, I have to say it's almost 5 years that I've been playing the cello and I can play pretty well, at least for myself.
Francine Toder (28:05):
I don't perform for anyone else and that isn't one of the goals of this stage in life but I can entertain myself and, right now, I'm working on a Vivaldi piece in E Minor, which gives me pleasure. And that's the idea.
Steve Paulson (28:20):
In the course of writing your book, you talked to some people who are well along in years who did start to play certain instruments. For instance, an 88 year old man named John, who took up to piano. Can you tell me about him?
Francine Toder (28:34):
Oh, sure. For a lot of the people that I interviewed, taking up and instrument or another art form came totally by accident. In John's case, he was always an appreciator of classical music, enjoyed attending concerts, but had never in his life had the time or really interest in playing an instrument. He was a pharmaceutical executive, very busy life, traveled all over the world. And when he finally settled in an apartment in San Francisco, when he was 80, he noticed that there was this space in his living room and so he impulsively decided to buy a piano. I don't know whether he was thinking it was going to be a piece of furniture or what. I don't think he really thought it through. But, eventually, he thought, "Hmm, maybe I should take some lessons." So he decided to do that. And in the course of doing that, while it was also very frustrating for him because it can be when you're a person of 80 and you like music, you know music really well, and you know how it's supposed to sound. And so, it's really hard to be a beginning pianist or whatever your instrument.
Steve Paulson (29:40):
Right, it can be really frustrating because you know it doesn't sound like what you've heard all these years.
Francine Toder (29:46):
Exactly, and it doesn't sound that way but his goals are different. His goal was not to begin a career as a concert pianist. What he told me was, "All of my life, I've tried to look at music. And it looks like a bunch of squiggles on a page. I want to learn how to read music." And so he did. He had the motivation, he had the ability to stick with it, he had the energy to carry it through, and he learned how to read music. Okay, so he practices every day. It's become a part of his life. It's as much a part of his life as brushing his teeth, and while it cam be really frustrating, it's also opened up a whole community to him. And the most interesting thing that I heard from him was that he can now listen to two pieces of music and listen with an educated perspective that he never had before until the fine points of this particular rendition versus that one. Even how the conductor did things differently. Well, that level of understanding and appreciation comes from learning how to play an instrument and also appreciating the complexity of it.
Steve Paulson (30:57):
Well, it's fascinating because you're suggesting that there were certain neurons activated in his brain that allowed him to appreciate the music more. There was something going on that enhanced his experience at the brain level.
Francine Toder (31:11):
Absolutely. There really is mounting evidence that playing music, and I don't mean playing it on your iPhone or your iPad or your audio system, can delay or really reverse the onset of normal age-related memory problems in older adults.
Francine Toder (31:27):
When I was in graduate school there was this belief that neurons do not continue to grow after about the age of 30. It's a slippery slope after that and that's the end of the story. That's what happens to your brain. Now, fortunately, we know that neuronal production increases and also there are connections between the cells called 'dendrites' that continue to multiply and what you need is the right way to stimulate the brain to make that happen.
Steve Paulson (31:58):
You're talking about what's known as 'neuroplasticity'.
Francine Toder (32:02):
Neuroplasticity. Exactly. Now, neuroplasticity happens no matter what but when you get older, you need to have the right ingredients to trigger it optimally.
Steve Paulson (32:13):
And you're saying that, let's say, a 75 year old can do this as well as someone in their 30's?
Francine Toder (32:21):
Well, the person who starts at 30, the one advantage that they have is they have more dexterity in their hands, they have more breathing capacity if they are playing a wind instrument, or something else like that. But, the advantage of being at this age is we have time, we have focus, there are changes hormonally. Decreases in testosterone and estrogen that actually make people feel more peaceful and more focused. And so they can attend much better.
Anne Strainchamps (33:10):
Francine Toder is a retired psychologist and author of "The Vintage Years: Finding Your Inner Artist After 60". Steve Paulson talked with her.
Anne Strainchamps (33:26):
Coming up, we'll meet a woman with a vision for transforming nursing homes and the lives of older adults with the arts.
Anne Strainchamps (33:35):
It's To the Best of Our Knowledge from Wisconsin Public Radio. And PRX.
Anne Strainchamps (33:45):
Thirty years ago, Anne Basting was a young theater artist when she volunteered to run a program for Alzheimer's patients at a nursing home. And something happened.
Anne Basting (34:02):
So I found myself in a locked unit on the third floor of a Milwaukee nursing home, trying to draw them out. They were in wheelchairs, a vagueness behind their eyes. People just sank deep inside themselves out of self-preservation.
Anne Basting (34:29):
Really, after 6 weeks of nothing coming out, I just tore a picture of the Marlboro Man out of a magazine and grabbed a big sketch pad. Let's take a look at this picture and just say anything. I said, "What do you want to call him?" And somebody said, "Fred." "Fred, who?" "Fred Astaire." "Where does Fred live?" "Oklahoma." And then somebody started to sing. And the whole group was just like, "What's happening?" And there's energy and there's playfulness and one answer was funnier than the next. It was also very poignant. "Was he married?" "Yes." "What's her name?" "Gena Autry."
Anne Basting (35:32):
Wow, we have Fred Astaire who's a singing cowboy married to Gena Autry. And they tend cows. "What do the cows say?" "They said, 'Hi Pat.'"
Anne Basting (35:51):
I'm like, "All right, the cows say, 'Hi Pat.'"
Anne Basting (35:58):
They wanted to be included in the story. That simple little gift fueled 30 years of work.
Anne Strainchamps (36:18):
Okay, let's think about this. Storytelling. Just, collectively making up a story brought a group of Alzheimer's patients to life. And Anne Basting spent 6 weeks trying to get that same group of people to volunteer a single memory of a place they'd traveled, the name of a pet, their favorite ice cream flavor. They had nothing to say until she asked them to make something up.
Anne Strainchamps (36:50):
Well, today, Anne Basting is a MacArthur Award winning theater artist and professor with an entirely new model of aging based on creativity and imagination. She's developed improvisational story-telling techniques for people with Alzheimer's and dementia. And she uses them in nursing homes to create and stage original plays for public audiences.
Anne Strainchamps (37:12):
She says, "Everything changes when you shift away from the expectation of memory and toward the freedom of imagination."
Anne Basting (37:21):
Well, if you're asking someone, "Do you remember when we did this?" Or even the expectation of, "Do you remember me and my name?" There's one answer. And, when you're dealing with cognitive challenges or any kind of cognitive disability, the likelihood that that pathway is broken is really high. But if you shift to open the question to what I now call 'beautiful questions' that open a shared path of discovery, you've opened a thousand pathways.
Anne Strainchamps (37:54):
What's a beautiful question?
Anne Basting (37:55):
So, an example is, "What is something you treasure in your home and why?" "What is the most beautiful sound in the world, and can you make it?"
Anne Basting (38:09):
It's this thoughtful poetic component of unlocking the world. You don't want to have too many cognitive steps in the question. But one that appeals to strength and one that appeals to emotional memory and that has a playful component as well.
Anne Strainchamps (38:26):
The experience of dementia, I think, mostly inspires fear. From the moment of diagnosis, we all know the way this story is going to go, right? Decline, senility, the gradual extinction of what we call 'personhood'. That story is so terrifying to us collectively. It's almost paralyzing. Why do you think we're so afraid of dementia?
Anne Basting (38:48):
We really, in Western culture, prioritize cognitive control and we subsume the emotional intuitive experience, which is present all the way through that experience you just described. So, that is still there. There's a lot of forms of memories that are still there but explicit, rational language is what erodes and that's where, in Western culture, we've put all of our eggs in that basket and we've set ourselves up plus our general denial around mortality. Which is also packed into that fear that you described. The fear and the denial has allowed pretty terrible care scenarios to take place that we prefer to hide it out of shame and so we want to stay independent as long as possible which means living alone in horrible isolation. We make it worse, so much worse through our own fear that if we can start to peel that away, the experience of living with dementia is not as pure horrifying as we make it out to be. It doesn't have to be that way.
Anne Strainchamps (39:57):
Do you see older people or people with dementia or Alzheimer's differently now than you think most people do?
Anne Basting (40:06):
I started very early on when I first started doing this work, as seeing this spark of humanity. The power of that is indescribable. That was 25 some 30 years ago and I now find myself growing into a personal relationship in my own family with my mother experiencing dementia. And it's a new test for me of being able to move through my own fears and my own emotional responses.
Anne Strainchamps (40:37):
Has there been a moment with your mom where something happened? A moment of awakening or realization for you. Just a transformative moment?
Anne Basting (40:50):
With my mom, she's very very early. So it'll get harder. But the thing I think I'm most proud of is my dad who's caring with and for her. He tells me stories about how he'll hit a moment where mom will forget something that they'd gone out to dinner with friends just a few hours before and she'll say, "Do you want me to set the table for dinner?"
Anne Basting (41:19):
He could become very upset by that but instead he thinks of a beautiful question and he says, "Are you hungry?" Opening that moment to emotion and allowing her to have her own response in that moment rather than shutting her down and saying, "Don't you remember? Don't you remember?" He's doing better than I think I could have turning my own work into the caring relationship with my mom.
Anne Strainchamps (41:47):
So, we've been talking about this on an individual level. So, let's make it big because so much of what you do now is really about changing the entire healthcare system in order to make this kind of creative imaginative connection baked into the way we treat our elders. You've talking about this lovely phrase you have that you think art should be poured into the water of our care system. Which I love. Can you unpack that a bit? What do you imagine?
Anne Basting (42:19):
It's actually just repair work because I think somewhere along the line late 19th century, we separated, we institutionalized the arts and culture world and the medical world. And they became completely separate. And I feel like slowly you can feel these two monoliths coming back to each other. The world in which human beings express themselves, dream, make meaning, and tell each other stories has got to come back and be part of being a healthy human being and community.
Anne Strainchamps (42:59):
So you mean that we decided, somewhere along the line, that there's amateur art, or art activities, but real art is something only professionals do?
Anne Basting (43:10):
Yeah, I think we created that MFA. Not that that's a bad thing, right? I teach it. This project I just finished in Kentucky with 12 rural nursing homes. Solid Medicaid. We staged original plays that were the most powerful theater productions I've ever been involved in in my life.
Anne Strainchamps (43:33):
I won't grow up, right? A Peter Pan story?
Anne Basting (43:36):
Anne Strainchamps (43:36):
Why Peter Pan?
Anne Basting (43:39):
It's a very powerful story to unpack inside of a nursing home.
Anne Strainchamps (43:43):
But there aren't any old people in Peter Pan. How does it even connect?
Anne Basting (43:46):
You know what the play ended up being? Because we unpacked it into what we call 'creative challenges' so the questions became, "What does it feel like to fly?" "If you could fly anywhere, where would you go?" "What is childhood?" "What are the feelings and the foods and the tastes and the sounds?" And the same thing with adulthood. We unpacked both of those things. When Wendy is literally shot down in Neverland, the lost boys build a home around her and it's a really creepy image of this border between confinement and comfort. And that is a very powerful theme in nursing homes.
Anne Strainchamps (44:30):
So what did you actually do?
Anne Basting (44:33):
The story became about the nursing home honoring Wendy who's been living in the nursing home for about 10 years and who's now in hospice. And who's been telling stories of Neverland and enchanting everyone who lives there with her goodness and her stories. They want to honor her at the end of her life with reimagining and staging the stories that she has told them. So they invite in an audience and it's interactive and they have different stations. One is the positive thought station so that you can fly. One is the fear station where you say what you're afraid of and then feed it to the crocodile who's a pretend funny crocodile.
Anne Strainchamps (45:18):
And what role do the nursing home residents play in all of this?
Anne Basting (45:21):
They were running the fear station. They were in the positive thoughts station. They all had costumes and face paint of lost boys or fairies or pirates and you hear an audio recording of these 'I am' poems that we had done with them as well, stating who they are and what thing in childhood they identify with a place that's special to them. It's just a really beautiful audio piece. And it comes to the person who played Wendy. She says, "I am Wendy." And then everyone says, "We are all Wendy." And they turn around to the audience and they say, "I am Wendy. I believe." And they put their hand out. In the Peter Pan story, they do that for Tinkerbell. That she's going to die unless you believe in fairies. The symbol of that is clapping in the Peter Pan story. And in this one it's just meeting the hand, touching an elder. That scene is so powerful that I had to play the 'tissue fairy'. So I was running around with tissues because people were crying. And once they believe, then we break it and we hear Frank Sinatra start to sing, "Fly Me To the Moon".
Anne Basting (46:33):
And then they go into this euphoric choreographed wheelchair ballet.
Anne Strainchamps (46:39):
The wheelchair ballet?
Anne Basting (46:40):
It's just a jubilation of, "You believe and now we can all fly." And then the last number, as if this wasn't all emotionally completely overwhelming, is the gospel song of, "I'll Fly Away."
Anne Strainchamps (46:57):
What's the impact on the audience like?
Anne Basting (46:59):
My favorite story was from Morgantown, Kentucky. Where there was a gentleman there who came up to me after the preview performance and said, "I'm the police chief and my office is next door and I have not been in this building since I was 12 years old because my grandfather died here and I wanted nothing to do with this place and I cannot believe what I'm seeing and I want to know how I can help." And I'm like, "Pff, that's what we're trying to do."
Anne Strainchamps (47:32):
It just seems like you have this vision. The nursing home is not a warehouse for the elderly that nobody wants to visit. We stigmatize aging so much that we don't think of elders capable of connecting let alone of making profound, moving, even enduring art.
Anne Basting (47:54):
If we just think that elders are facing the end. Some of them are living with incredible challenges, too. And pushing through and finding meaning and making meaning is incredible.
Anne Strainchamps (48:10):
What you're saying is they have what we need so badly in our culture because we have pushed death and awareness and knowledge of death so far away that, of course, it then haunts us. And they have what we need.
Anne Basting (48:26):
I say, sometimes, that going out and doing this work is the best therapy I could ever have. I'm brought into the present moment, I'm brought into incredibly powerful relationships with people, I'm making beauty and meaning. I just love this work.
Anne Strainchamps (48:58):
Anne Basting is a theater artist, MacArthur genius, and professor in the Peck School of the Arts at the University of Wisconsin in Milwaukee. If you'd like to learn how to engage more creatively with the seniors in your life, check out her time slips project. You'll find the link on our website at ttbook.org.
Anne Strainchamps (49:21):
Want more conversations like this one? We keep at least a dozen episodes in our podcast feed. So look for To the Best of Our Knowledge on your favorite podcast platform. Or, if your grandchildren keep telling you to listen to podcasts but you don't remember how, visit our website, click on the words "Get the podcast". The web address again is ttbook.org.
Anne Strainchamps (49:50):
To the Best of Our Knowledge is put together each week by people who believe in curiosity as a way of life. Wisconsin Public Radio makes it possible. Shannon Henry Kleiber produced this hour with help from Charles Monroe-Kane and Angelo Bautista. Mark Riechers is our digital director, Joe Hardtke is our sound designer, Steve Paulson is our executive producer, and I'm Anne Strainchamps.
Anne Strainchamps (50:14):
Thanks for listening.
Speaker 12 (50:25):
I am Libby.
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I am Johnny.
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I am Dixie. I'm a lover of golf. And master of none. I'm a singer, artist, and poet.
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I am Dolores.
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I am happy as a lark.