At our “Walk With Me” event on June 4th, 2019, local artist and Dementia Friendly Washoe County member Carter Norris curated an immersive art exhibit titled Lived Experience featuring stories and photos of strength, resilience, and community within the context of dementia. Using an alternative photography process called “cyanotyping,” and printing directly onto textiles, Carter produced an evocative display of quotes and photos sourced from Washoe County community members.
In her foreward to the exhibit, she writes:
The intent of Lived Experience is to use marginalized art forms as a voice and platform for a marginalized community. Craft art is undervalued within the elitist fine art world as simple craft, just as persons living with dementia are undervalued in contemporary society. Despite this, craft art and people living with dementia are both capable of significant contributions to society. These parallels make cyanotypes on textiles the perfect medium for Lived Experience.
You can download a full copy of her exhibit catalog here.
Here is a small taste:
“One of the things I recall [my grandmother] saying to me specifically… was that the problem was not having dementia, the problem was being surrounded by people who devalued you, or society that didn’t recognize you, because you suddenly had this diagnosis that was viewed as debilitating…I truly hope we can build a society that puts the value back in individuals who in the first place should never have lost it.
It’s our civic duty as a society to do so.
“She is one of the most social and feisty people I know and has the most hilarious sense of humor. No one makes me laugh like she does. Although she is progressing and some days are more challenging than others, she has not lost her sense of humor one bit! She really gets a kick out of the Snapchat filters and always asks to take silly photos.”
“I had a dream of riding my bicycle across America. But then when my husband got sick, I wasn’t able to ride as much because I had to pay someone to be with him when I wasn’t there. I sortastill have that dream, but I’m 74. And I think I could still do it,
maybe go and have a sign on my back to support Alzheimer’s”
“I think it takes patience, when your loved one is sick or ill or disabled in some way. I mean I don’t feel sick, but I do get… sometimes I get mixed up. And then it passes.”
“There is an evolution of the care partnership as the disease progresses, and that is one of the major take-aways that I have seen from my professional experience and my personal experience, that it evolves. The disease progresses, but so does that care partnership. And the contributions that both parties make also evolve over time.
They don’t diminish, they increase in value.”
“I had a friend who I worked with, he was actually one of my research partners who lived with dementia. This is a story about strength and resilience. And he was an avid golfer; from what I heard, he was a pretty good golfer. And when he developed dementia his golf game kindawent downhill a bit, but instead of disengaging from golf, he was really fortunate that he had friends and family members who were really supportive of his continued engagement in golf, and you know, he’d go out there and he told me “You know, Jennifer, I lose a few more balls than I used to, but I really enjoy being out there.” And for me, that’s a story of resilience, that he wasn’t going to give up golf just because his golf game wasn’t as good as it used to be. He was resilient in finding new ways to enjoy golf. He was resilient in just enjoying the social aspect of golf and being out in nature, and enjoying that aspect of golf. When I think about resilience, I think about people’s ability to adapt to the change in their life with a positive attitude, and that’s exactly what my friend had. He was able to adapt with a positive attitude, and that’s pretty resilient.”
“I think the only way I’ve changed—and this probably comes with aging too—is to be more understanding of other people… All of a sudden, it’s not like it’s me and them; It’s us… So, I think there’s that love that comes through much more than it ever did before.”
–Mary Lee Fulkerson
“Dementia takes but it can also give. I got to experience my mother’s love in a way that made it real. It gave me her laughter, and the lightness that was within her but had been hidden. It gave me the memory of cooking with her, joking and talking as we blended the dried fruits and spices that made her great grandmother’s traditional Christmas pudding. It gave me the memory of my dad quietly stepping in as deficits became obvious, smoothing the way and making her life work. Dementia took away her cognitive powers but it gave me her love. I am forever grateful.”
“The visits we had with Dad are now cherished memories of a dear man, who worked hard, volunteered for many worthwhile organizations and loved his family.”
“A friend living with dementia, Dr. Richard Taylor… said “As I progress with my dementia, my humanity increases. And people have to get ready for that humanity to be unleashed.”… Yeah, Richard had struggles, and yeah, at times Richard suffered. But Richard was able to recognize that sometimes the adversity we experience in life, whether it’s dementia or some other type of adversity, can actually help us grow and develop as human beings. Sometimes adversity brings out the best in us as human beings. And dementia is no different. Even though dementia is a challenge, even though people can really struggle with dementia, I believe that sometimes there are gifts in dementia.”
“My wonderful Mother In Law, Marilyn, has vascular dementia and has no short term memory. She comes for dinner every Saturday night and she LOVES our dogs, Jane and Lucy (and they love her!). She enjoys the view in our backyard. The fact that she will not remember she was there once she is taken home can make us feel sad and hopeless sometimes. But we do believe that the good feelings and happiness she has petting the dogs, looking at Mt. Rose or eating a piece of homemade cake will last and make the rest of her evening and the next day happier. I get so caught up in thinking about the next thing I have to do and I tend to lose focus of the moment. Living and enjoying the moment is something Marilyn teaches me.”
“One of my roles is to help Roberta stay connected to this place, and this place is literally this house, but this place is this community, this place is this region from Virginia City to Tahoe. And to help facilitate activities and… people, parties, that will keep that sense of connection going as long as possible.”
“[I’ve been walking dogs] for about a month, and I have to get in 30 hours before I can go up to the next levels. We can only walk dogs that are green-dotted, which mean they probably won’t bite you. Well, they might bite! Puppies, anyway… I think I’m close to the 30, because I’ve been coming three days and sometimes four, for about two hours each time.”
“I really like to volunteer, so this is one way of doing it. It helps me walk… I just like the idea of trying to save the dogs, and give them a good last life if they don’t get adopted.”
“There’s all this money being spent on Alzheimer’s and all this money being spent on how to train the caregivers, but there’s no money being spent on how to help us who have it. How do we deal with it? How do we talk about it? Can we talk about it?”
-Mary Lee Fulkerson
“Home is the ground you stand on. Standing on that ground, you can feel safe. And from there, you can take risks. You can go wherever you want to go. And we’ve done that: Roberta went to oxford, that’s where she did her internship for psychology. We’ve lived outside of Rome, we’ve lived in Prague. So home is not binding, but home is a center. And you can go out from the center to other parts of the universe, but you can still come back home, and you get that kind of nourishment and that sense of safety, and that sense of emotional wellbeing that I think is so crucial to a healthy life.”
“We love to eat, we love having family dinners together. We share poetry and family stories. Mom had this tradition at family dinners, we’d have to go around the room and say one thing that blah blah blah–we’d like roll our eyes–you know that you’re grateful for or whatever. But it’s really a good way to connect, and we try to, you know, keep that together.”
“I don’t feel sick. I don’t feel… It’s such a weird kind of sickness, especially at the beginning of my dementia, ostensibly. But now it’s just kind of in the background.
It’s like ‘hey, still here!’”
“He had requested we dance to “The Girl from Ipanema” by Frank Sinatra. The moment I pressed play, forty years melted away. He swayed and sprung to life, swing dancing with me without a care in the world. His smile was radiant. And I could have sworn he was only fifty. I will never forget the echo of the past, that was still inside this man who would always feel that music.”
“I went to Carson City to try to tell my story to the senators and congresspeople… I sat on the Senate Floor, and then we went in small groups to other assemblymen and women, and also to the senate. Some of the bills did get passed…”
“One of the interesting things about my Dad’s dementia is how it has improved and deepened our relationship. Don’t get me wrong. My Dad and I have always been close, but we never really talked much, other than dinnertime conversations which usually fixated on politics ever since I was a teenage, burgeoning Democrat in an otherwise Republican family. So, mostly, my Dad and I debated…Now we talk on the phone all the time. We talk about everything. I guess it’s a gift dementia gave us; a deeper relationship. I feel like we know each other better, even though we’ve known each other my entire life, and for that I’m grateful.”
“Resilience and thriving in an environment may manifest in different ways, not in ways that we may expect. Because I know sometimes we may focus more-so on productivity, on having measured outcomes, and that’s not necessarily something that everybody can contribute. But there are different contributions that should be valued and recognized regardless of whether it’s something that we expect or not.”
“I think I’m just a normal son. Just a son trying to do the next good thing, you know? And to stay present. I think that’s the main thing, just this moment right now is the most important time. And I think that’s what my dad taught me, was just to be real present with him as he progressed.”
“We were lucky because, in many ways, we got to know him at a time when he was also his most vulnerable, and in many ways, most loving self. For us it was our long drives into the Colorado Rocky mountains paired with a favorite artist such as Bob Dylan accompanying us that would inspire him to remember moments in his life in amazing detail. We were astounded at the clarity of him being able to recall a memory down to the very shoes he was wearing. Helping him relive his memories was a beautiful experience to share through his dementia.”
“People talk about dementia as a path or outcome that is fearsome and terrible. I have a different story. Dementia was the best thing that ever happened to the relationship between my mother and I. My experience with her journey into dementia gave me a certainty that I had never had before, along with memories that I will cherish forever.”
“I think we need to be talking about it with people. I mean, when I realized I had it, I kinda went ‘Oh my god, what is this? Am I gonna die?’ No I’m not gonna die, right away. I’m gonnadie when I’m old. So, I think it’s really important to get out there, and have people out there.”
“I think my attitude has [changed]… You know, that attitude of ‘Oh my god, this is so sad.’ You know, after dad and everything. To more of, you know, suffering is inevitable, and how we can deal with it in a loving way…with an open heart, and just to be present for the moments that we have right now, right here. Fully. That’s key.”