Transcript 38

Ep 38

 

Speaker 1 [00:00:00] You are listening to the second episode in Dementia Dialogs, Art and dementia series hosted by Lisa LaSalle. Today we welcome Cynthia Huling Hummel as co-host Cynthia has a background in parish ministry and lives in Elmira, New York. After being diagnosed, she has become a leader in the dementia field and artist and an author. Lisa and Cynthia are in conversation with Linda Everyman and Dawn Windsurf. Linda has been a caregiver of both her parents and her husband. She married Dawn after the deaths of both her husband and Don's wife. Linda is primarily a fabric artist, and after a career as a therapist, Don has deployed his skills as a musician, songwriter and poet. In working with people with dementia and care partners.

 

Speaker 2 [00:00:58] The theme of the episode today is about the importance of expressive arts in self-care. I have been doing a number of these podcasts for our listeners. Can you describe what expressive arts means?

 

Speaker 3 [00:01:16] Yeah. I mean, basically, we were talking about esthetic kind of experiences, artsy experiences that have the power to prompt emotions to allow for an expression of emotions or emotional reaction, to prompt memories and associations, and to allow some participation and sharing of that kind of experience with other people. So really, anything you think of as being artistic, but particularly music, visual arts. I don't have direct experience with dance or drama, so I'm not so sure. But people say that, so I take them at their word about that. Writing poetry for Linda, it's fabric arts quilting. Yes. Yes. And in fact, Cynthia is is wearing a stole and Alzheimer's stole that Linda made

 

Speaker 4 [00:02:13] for her very first one that I made. That's the first

 

Speaker 3 [00:02:15] one in that. Yeah.

 

Speaker 5 [00:02:18] And I love it. I wear it all the time and I talk about your advocacy. The two of you and and how. This is just one aspect of the many ways that you connect with people living with dementia, with congregations, with care partners to bring us all together in our mutual caring concern for for those living with Alzheimer's disease. So I just treasure that stole and I've gotten more and more people interested in it, and they'll ask, you know, how can I get a story like that? And so I wanted to maybe open up the questions to to talk about how you got started with your soap ministry, Linda, making these beautiful fabrics tools and how you've been distributing them?

 

Speaker 4 [00:03:00] Well, thank you for asking. You know, one of the aspects of the expressive arts is also symbolism. And especially for me and in terms of advocacy and the way that the stolen ministry started was in 2018, Don and I applied for with our friend and fellow advocate, Dr. Tony Potts, for a grant to help foster a dementia friendly faith communities in Birmingham, the Greater Birmingham, Alabama, area. We received the grant and in the course of the year we visited, we made about 40 congregational visits and we were able to buy books and DVDs and to visit with pastors, rabbis, chaplains, congregational care staff and to talk about dementia on one of the visits. We were sitting in an office and one of the young pastors had a beautiful wooden rod in his office. And from it, he had his collection of stalls. And one of them was a breast cancer cell. It had pink ribbons on it. It was very pretty. I was, of course, intrigued with it. And at another visit, we were waiting for the pastor to come in and on the back of his door was his collection of stores, and one of them was a beautiful white wedding stall. And when it came in, you know, I was looking at it and I made a comment and he started to tell us the story of his store. And it occurred to me that, you know, fabric holds memories and that a store, which is a sacred liturgical garment, just goes such a long way without words in showing our support for families facing the challenges of dementia. So we were involved in this campaign to foster dementia friendly faith communities and to make it safe and acceptable to talk about it. As a matter of fact, our theme was Let's talk about dementia, you know, let's talk about dementia. And so I thought, Well, if a pastor, priest or rabbi and the rabbis case were utterly, we're standing before their congregation, they wouldn't even have to say anything. It would show their support. Also, we were at an advocacy summit and a pastor came wearing his stall. And I thought, Well, there's lots of opportunities for members of the clergy to wear a stole, both in terms of support and advocacy to build awareness. So Don came up with the title for our book. We wrote a book called Stolen Memories, of course, a play on the word. And a friend of our who was who is a rabbi asked if I would make him tell it. My first response was, Well, now I don't know anything about doing that, and I certainly. Don't know how to do the type France, which has 600, I believe it's six hundred and four, if I'm, I could be wrong. But anyway, tied knots at all are very symbolic and representative and he was like, No worry, it's you can make a like one and I will tie it and you pray as you tie it. But at any rate, the very first store that I made was first something to celebrate her advocacy and our friendship. And from there, I've made and given away over 100 and would be very happy to continue to do so. And we wrote the book with instructions in case others wanted to join us in the ministry. Every single one has been meaningful to me, but one that really surprised me was after Cynthia's. I made one for our dear friend, who is 92 and a retired Presbyterian pastor and has spent his life really caring for and advocating for families facing dementia. And right after I sent it to him, he wrote me back and told me that he had revised his will and that in his will, he asked that at his memorial, his cremains and his Alzheimer's store would be on the altar in recognition of his work on behalf of families for Alzheimer's.

 

Speaker 2 [00:07:49] It's such a meaningful way to share your passion with other people.

 

Speaker 5 [00:07:56] Lisa, when I went to visit Don and Linda, one of the fun things that we did that's connected to the arts and dementia is we sang and when we got on this call this morning, I was just loving the costumes for those who can't visualize that. Linda came up with a big pink southern belle hat and Don had a top hat on. You're looking like you're ready for an Easter parade. What was going on in Alabama today?

 

Speaker 3 [00:08:28] Was a huge part of our lives right now is doing remote Zoom singalongs. We used to do them in person with several of the local respite care program. We love these programs. We can't say enough about them. You know, part of what we do is is sing alongs. And today we had an Easter or spring oriented kind of theme to it. We try and do themes and and we research songs that people will probably recognize from their childhood or that are meaningful, that represent the theme, but that also, you know, you can you can sing too. But we supplement that with all sorts of visual stimulation, too. So we will have kind of costumes that we wear and that was for Easter Parade. We did that this morning. And I'll have some trivia information. Easter Parade was by Irving Berlin in 1933, but best known in the movie in 1948 by Fred Astaire and Judy Garland Easter. So we put a lot of time into that, and it is right now since we're so shut down with the COVID stuff is probably the most, the most meaningful interaction that we have, particularly with people who are living with dementia and to some extent with their caregivers. Some some join in on the thing and some don't. But there's a, you know, there's a whole philosophy underlying what we're doing. It's not just

 

Speaker 4 [00:10:01] fun,

 

Speaker 3 [00:10:04] but it also is to accomplish a number of things. It's to give these people who are living with dementia a chance to socialize, a chance to be competent. They're singing. We had a choir, somebody who had previously been a choir director, direct all the people. This was when we were in person. We had again, when we were in person, there was one guy that had a harmonica that he carried with him everywhere, and he brought out that harmonica and he played with as the same thing with a guy with guitar. So we're trying to let people show competency. We're trying to let them express feelings. We're allowing them to be creative. It's an it's an artistic esthetic sort of thing, so they can be creative. One guy had I don't know where he got a hold of this finger puppet. Oh, I remember that, Doug with this. And he he called it Leon, and he had Leon direct the singing for everybody. It was hilarious. But he was, I mean, he was doing something great. If the focus wasn't at all on what he could no longer do or had trouble doing, it was very much on, Hey, here's this guy, and he's being funny and he's sharing this thing well. Oh, and

 

Speaker 4 [00:11:16] Phyllis in the tambourine?

 

Speaker 3 [00:11:18] Yeah, my tambourine lady.

 

Speaker 4 [00:11:19] Oh, she was fabulous and I can't remember. Cynthia was with us or not one time when we were bringing art to life and we had the woman who had previously been a church organist and had a keyboard.

 

Speaker 3 [00:11:35] That was when Beth and

 

Speaker 4 [00:11:36] Jeff's right and she got up and played. And another man who was in that group, he had how he had Parkinson's disease. So I remember this about him. Don had an extra guitar and handed him the guitar, and he played along with us. I mean, so it was just it was so much fun.

 

Speaker 3 [00:12:01] Well, and and the arts again, you know, going back to the arts. And I think that's particularly the case with music. I mean, I'm a musician, so maybe, you know, I'm a little prejudiced, but I think that other people are very out the same sort of thing. It just has an amazing power to let things emerge, you know, reminiscences, memories sharing, connecting. And it's sometimes it's very surprising and it's fairly routine. And in these kinds of sessions to have people who really would have difficulty maybe even having much of a conversation with you.

 

Speaker 5 [00:12:40] You know what? I wanted to ask you when I was there, Linda. I remember seeing you had piles of quilts that you had made for each one of those participants in the Bringing Art to Life program that you would create. Aided with somebody special in mind that would be awarded it some sort of ceremony, I don't remember all the details. I was thinking about quilting as art and how you use that to help people with memory loss and help. You've shared that with families and with other participants. Can you say more about that, how you got started on that?

 

Speaker 4 [00:13:15] Well, I'd love to tell you all about that. So that's an outgrowth of a program that started at the University of California, San Diego at the Alzheimer's Disease Cooperative Study. We All Termers Disease Cooperative Study was founded in the 1990s. It's a partnership between the National Institutes of Health and the University of California, in which they are the host for national clinical studies. And there is a consortium of, I believe, about twenty nine Alzheimer's disease research centers across the United States. So a friend of mine who was a quilter decided that she started the Alzheimer's Disease Quilt project, and it was a way to, you know, another name for quilt is a comforter. So it was a way to thank people who were participants in clinical studies and also to emphasize that you're not just a no, no, you're a person, but to thank them and to honor them. This is this program is ongoing in which quilts are given to participants in clinical studies, and Cynthia has received one, but I decided to bring it to Tuscaloosa and with the Bring Art To Life program I have, the student says they got to know their participants. Tell me about them. I had a set of questions that I'd asked them, You know what? What was your partner's hobbies? What did they do when they were growing up? What kind of music did they love? What did they talk to you about? And so the students would provide me with that information, and I would make a personalized quilt for each of our participants. One of them, we told you about the woman who had been she had played the organ at her church. Her name was rural. She played the organ and she had led Bible studies. And that was so meaningful to her and to the students and the things that the students learn. I mean, I think one of the most wonderful things to come out of the brilliant artillery program is you think of the students had seen the life of the person with dementia, but the person with dementia is also enhancing the life of the student. Oh yeah. They are transformed

 

Speaker 3 [00:15:48] and there are people who have changed their majors into fields related to aging or

 

Speaker 4 [00:15:55] students write about. And at the saw at the celebration dinner, the students stand up and walk the person with dementia and their family attends. The students attend and everybody attends. But the students stand up and thank their participants and tell them what they learn from them. It's always very moving. So anyway, I made Merle quilt it up, pianos on it, and it had music on it, and it had the words from gifts of the spirit. You know, like patients love peace. And I presented it to her and she was so touched and she wasn't the only one who did this, but she wanted a picture made with me and the quilt and her. So we did. You do that picture? And you know. We had said that, you know, music touches you in so many ways and it stays with you. Another experience that just really was profound to me that I always remember is, as I said, Don would go every semester with a band to bring in or fly with his musicians and then come to the celebration dinner a couple months later at the end of the semester. Well, one semester he had a conflict and couldn't come to the celebration dinner, but I went anyway. So I'm walking into the room, and one of the women who was a participant with dementia is coming in with her family and she spots me now. Mind you, I only have met her once, and it's been two months since I've seen her. And she comes right up to me and the first thing she says to me. Where is your husband, the musician, is he going to play for us? I met her once two months ago. She has dementia and you'll remember that experience and wanted to know where he was. Let's not discount what touches people's hearts. Yeah, you know, and that's that's a great part of the beauty of the expressive arts. Of course, there are words to music and poetry and such, but there are so many other components that tap into so many levels of our memory, of our emotions, of simple wisdom. To us, a comforter is comforting. It is, you know, love and warm and caring and someone willing to put the time in for someone who is valuable enough to receive a gift. So, you know, I just the expressive arts are lovely.

 

Speaker 3 [00:18:50] Well, and well, let me take it to another direction too, is that they can allow the person who may have some communication difficulties associated with the the process that's going on in their brain to be able to express themselves. And it is so important for us to listen to the voices of people who are living with dementia. I mean, they're the ones that are in there. They know what it's like, they know what they're going through, and it's so important we can learn so much. But it's also so meaningful to them to be able to give to us this information and this help and this this assistance can tell their story and to tell their story.

 

Speaker 2 [00:19:39] So how do you use the arts then in continuing to live well with dementia, right? Because it's you're living with dementia. So, you know, talking about all the expressive arts and all of this wonderful thing that you all participate in. How do you use that in your own self-care?

 

Speaker 4 [00:19:58] As a person with dementia or as a care partner,

 

Speaker 2 [00:20:02] I'd like to hear both perspectives.

 

Speaker 5 [00:20:04] Well, as a person with dementia, I just love doing art, making art, creating art, sharing art. I've been taking online painting classes. Now I'm thinking about Lester Potts, Danny's dad. You know, last week we worked on ponds and landscapes and sea turtles, but it's fun to sit here and paint with my instructor on online. They were great. This one group of folks called the memory maker project up near where I live, provided everything I was mailed all my art supplies. And then I sit down with my, my art instructor and I've been able to not just make art during that segment of time that we've we call our class time, but just during the week to de-stress, to help me connect, to help me focus. I love doing that. I love singing with my guitar and I've been doing lots of that. Especially offering, as Don said, concerts on Facebook Live for the church summer offered for the adults doing him things and summer or sing alongs with kids, silly songs or or kids songs that connect to faith. And it's just been a great joy to do both of those things that it activates all kinds of memories. Before COVID, I was in a choir and we did the major works the Brahms Requiem, you know, big works by Beethoven and being able to actually read music and sing in a choral group. It's a different kind of singing than my being in a country rock band, which I love doing too. But having those experiences just built those synapses and gets those creative juices going and connects me to other people, and it brings me great joy. And so I'm very blessed.

 

Speaker 4 [00:21:50] It takes your mind off your troubles.

 

Speaker 5 [00:21:53] Oh yeah, you can focus on your troubles, but it's not going to make things. I could sit and be very depressed about my diagnosis and then just kind of cocoon myself. But that doesn't change things. But by getting out and doing things, especially creative things, it just takes your mind away from it. And you focus on the positive. You're in fellowship with other people and it's it's great joy.

 

Speaker 2 [00:22:16] What about for you, Linda?

 

Speaker 4 [00:22:18] I call Cynthia, said the. I got back into the fabric arts when my late husband had dementia. I I there came a time when I needed to really spend more time in the house with him. If I were out in the yard, you know, I just needed to have more use of word supervision of him or keep him company. And so I took up knitting. At that time, I started knitting for a tremendous group that I love. Project Linus and I would sit in Lincoln's house.

 

Speaker 3 [00:23:06] There would be given to

 

Speaker 4 [00:23:07] children, be given to children from hospitals age 18. It allowed me to do something for others taking myself out of myself, but also to keep Richard Company. And I enjoyed that. And then, you know, later I found out about the Alzheimer's Quilt project. I loved that because as a matter of fact, even though they're in San Diego and I'm in Birmingham, I just meld them a quilt that's about a week ago in memory of my late husband that had a farm theme to it because he'd spent some time on a farm. When I'm doing things like knitting and quilting. I'm involved in the colors and the fabrics and the pattern, and it's very relaxing. So I love that and the quilts that I made for Downey's program, some of them have a lot of images in it because my own tilt, which I told the students and the families of the participants is you have this lap quilt, so it's about four feet by four feet. But for one man, for instance, it had bingo cards that had footballs that had basketballs that had a song lyrics in it because those are all things that he loved. So picture yourself with, say, a coffee table book, but your coffee table book is a comforter that sits on your lap and you're just sitting there, you know, next to your sweetie and you're like, Oh, look at that basketball. I remember when you played in high school, you know, so it's this a storybook on your lap? Yeah. I'm all I'm all about the fabric, arts and, of course, music, although I'm not a musician, but but I love all of that.

 

Speaker 2 [00:25:08] Sounds like it's very it's almost like transformational. Are your words formed into onto another level,

 

Speaker 4 [00:25:16] you know, to make a quilt? And give it to another family who is where were the patient because they are, they are a patient there in the hospital, is involved in a clinical study is especially meaningful to me to do it in memory of my late husband. As I remember sitting in those sterile hospitals with people poking needles in his arm or sending them off to an MRI and to have the human touch of someone come in and offer you connection and love understanding. You know, it's just it's meaningful. And most of the people who contribute to the Alzheimer's Quilt project are former caregivers themselves. So it's very healing in that regard to pay the kindness forward that others have given to you.

 

Speaker 2 [00:26:23] Now, Don, what about you and being in involved in the arts and your own self care?

 

Speaker 3 [00:26:29] Yeah, part of what I got into, I was taking care of my late wife, Susan, who had vascular dementia, and I had already written a self-help book about marriage. I'm a retired psychologist and marriage and family therapist, so I wrote a book about how to do a healthy marriage based on my years of experience, sort of being a psychologist, but mostly by being married. And I wrote it in song lyric form of a rhyming verse. I don't know that it is good enough to be called poetry. And I put not all of it ever got put to music, but I started doing that about the emotional struggles that I was experiencing and I knew other people were experiencing as a caregiver. And that really did a tremendous amount for me. I hope it's been useful to some other people because but I did it in song lyrics because I hate self-help books. You know, I can usually get Abby to Page 13, sometimes four, and I just throw the thing down. It's repetitive now, boring. So I wrote it in that form because I wanted it to be more accessible and user friendly and memorable, and that kind of still have humor. And it was a way to put a lot of humor in there, but I would. I found that I was writing, you know, like I'd have a particular theme or section or topic that I was working on and things would just pop into my head, maybe while I was out running, you know, for exercise or in the middle of doing some care giving process, giving Susan a bath or feeding her or something like that. So it was very nurturing to my spirit, but it was also very helpful in letting me see myself from outside myself. So I gained a fair amount of insight and awareness about what was going on with myself by virtue of putting that in an artistic form and working on it, refining it and and stuff like that. So I really credit that with helping to keep me going. And I did manage to play some music with other people during those times, too, because there was a lot of years.

 

Speaker 4 [00:28:58] And actually. Had he not written that book, we would not have met. That's true. That's one of the songs that he wrote for Susan is in our book Peanut Bits of Bark of Stone and Tim.

 

Speaker 3 [00:29:18] Right, very good. Let me let me say something about that, about the song, because it tag teams on what you're saying there. The song is I wrote this actually for Susan and recorded it and she got to hear it. This song is painted bits of bark and stone and tent, because right from the very first that I met her in college, what she would do to show people support or affection or encouragement or whatever is she would paint a little something on a rock that she found or a rusted tin can lid that somebody left in the gutter or something or a piece of bark. And that really, to me, illustrated who she was. It said something about who she is as a person. And one of the hardest things for her about being so incapacitated with her vascular dementia and strokes because it was all these multiple strokes. I mean, she was almost blind. She couldn't feed herself. I had to do pretty much everything for her. Eventually, she didn't feel she could give anything to anybody, which is who she was. She was a giver of simple gifts. In fact, that old Quaker in almost all gifts. Also, I thought, really illustrated something about her. So at a point where I was very much struggling with caregiver burnout and it was so hard physically, emotionally, you know, I was anxious to know what's going to happen the future, you know, we're having such a hard time. And I was getting irritated and frustrated and angry and just really being nasty. And it was it was not pretty at all. But that song and that metaphor for who she was in a musical artistic sort of way helped me remember. Wait, a second, you know, she's not giving you a hard time. She's having a hard time. Yes, you're having a hard time, too. You're having a hard time together. But that's who she is. That's who's in there. You know, you may it may be hard to access or to express now. But so that was very helpful for me. And I think that's a helpful thing for other people too is is to have to carry around with you. That sense of this is the person like Linda was talking about with Richard. This this is the person. Yeah.

 

Speaker 5 [00:31:43] Are you going to give us a tune?

 

Speaker 3 [00:31:45] I really hadn't been

 

Speaker 5 [00:31:48] picking up that guitar, grab that banjo. I see it over there.

 

Speaker 3 [00:31:53] We'll do this one. This is nice. Well. She won my heart in college when she lived across the street. Her roommate was a friend

 

Unidentified [00:32:21] of mine and we thought we should meet. I like the looks and kindness.

 

Speaker 3 [00:32:26] What made on love be was her baby. South Park and St. Andrews and I leave for class each morning and come back again at dusk to find she left a love note painted on a piece of bark, or maybe on a shiny rock, spotted some

 

Unidentified [00:32:47] in her painted bits of bark in stone.

 

Speaker 3 [00:32:53] Should stop and chat on campus when I study for the jury, when she leaves that open up my book again to see a sweet person arrested Tin can the cheap slip thin, more painted bits of bark and stone to grow old along with me, she wrote. The best is yet to be that browning poem that she quote proved true for her and me, who guessed that such a little rhyme lifetime can be banned from painting bits of bark in stone and in. We very graceful, whose son shared together for years. Now her health is slipping past the end of her life nears, so it's my turn to care for her and keep love flowing, then bring her painted bits and stone. 10. I know that I must let her go. Release her from my heart. Let presence stop our past so our forever love can start. But I give all I treasure for that pleasure once again. Oliver baited park and Stone, and I'll let on now end up, but are always to be end clutching painted

 

Unidentified [00:34:16] bits of punk and stone to. But the.

 

Speaker 2 [00:34:46] Very lovely. Oh, Cynthia's got her guitar as well.

 

Speaker 5 [00:34:51] Yeah. OK, I'm going to play song. I'm yeah, sure. My mom absolutely always loved the song. Well, my guitar is a little out of tune, but I'm not going to take this off.

 

Speaker 4 [00:35:03] You hear

 

Speaker 5 [00:35:06] me. You are my sunshine. My only sunshine. You make me happy. When skies are gray, you'll never notice how much I love you. Oh, please don't take my sunshine away. Oh, please don't take my son son away.

 

Speaker 3 [00:35:42] It was funds that you have done that alone.

 

Speaker 5 [00:35:45] I know well, when we get back together, we'll do it again with harmony. We'll bring in Danny Potts and bring it down. Yeah, it'll be fun to get together again.

 

Speaker 2 [00:35:56] Thank you all for sharing your beautiful talents with me and with the audience. And you know, I hope we can do this again sometime now.

 

Speaker 5 [00:36:05] Thank you, Lisa.

 

Speaker 1 [00:36:07] Thanks to Cynthia, Linda and Don for joining Lisa and sharing with us both their talents as artists and articulate advocates for people with lived experience and for talking about how new channels of expression offer hope for folks confronted by dementia. Our series on the arts continues in December. Be sure to visit the art section of our resource page at our website. Dementia dialoged Dot S.A. to read more about Cynthia, Linda and Don. And to view some of their work. We want to hear from our listeners about how we can improve our podcast, make it more accessible to people and reach more listeners to do this. We're holding three separate focus groups in November. Please consider joining one of them. The groups will be professionally facilitated and will last only one hour. For more information, please write to Dementia Dot dialoged at Lake. Had you dossier. It is not too late to join one of the groups thanks to the Center for Research and Education on Aging and Health at Lakehead University. Our institutional partner and to the Public Health Agency of Canada for its financial support. My name is David Harvey.