Love Is Not A Memory
Throughout their 57 years of marriage, Karen and Ed Young have made a home together, raised seven children, and seen Ed through a cancer diagnosis. Now their days begin with Ed reminding Karen who she is and telling her about the life they've built. Karen has advanced dementia and Ed is her devoted caregiver — though he prefers the word husband.
“My Brain is letting me down...” Karen wrote in her journal on August 29, 2008. When Karen began noticing symptoms of dementia, she started a journal to document her progression. Nearly a decade later, Karen can no longer communicate beyond a handful of phrases.
This project includes images created from scans of Karen’s journal and Ed’s notes.
Wearing giant sunglasses, Ed tries to engage Karen as they sit on their porch swing. Though Karen didn't respond, Ed has learned not to get discouraged. When doing something silly or dancing doesn't work, he gives Karen playing cards, toys, cash, or catalogs to keep her entertained.
“At the very beginning, it would agitate me and I would be so worried,” Ed said. “Now, I usually go with the flow.”
Ed believes that caring for Karen in the home they've shared for over 50 years has helped her to live longer and be happier. On the wall hangs enlarged photographs of them as teenagers: attending the high school basketball sectional at Huntingburg Memorial Gym in 1957 and swimming at Lincoln State Park during the summer of 1958.
“She’s got my going steady ring around her neck,” Ed pointed out. “Going steady meant she was my girl.”
Ed tries to coax Karen into rising from the bed to bathe. When giving Karen a sponge bath, Ed wears medical gloves for hygiene reasons. Karen also needs assistance to use the bathroom due to incontinence.
“It’s a terrible, terrible disease. It deprives you of life,” Ed said about dementia. “It deprives you of your personality. It deprives you of just taking care of yourself.”
“My Eddie, I have changed and we're both SCARED. My need for you is more than at any time of our marriage. I need you,” Karen wrote in a note to Ed, which she copied into her journal on August 19, 2008.
“Whenever I'm undressing her, she fights me. I can imagine what's going through her mind and then I try to ease her mind,” Ed said. “At the time, she might not realize it’s me, her husband, in there helping her. She might think it’s somebody else or that somebody’s attacking her.” Ed patiently reassures Karen with a constant stream of “everything’s going to be okay” in a calm and even tone as she cries out while he puts on her night gown.
“Just like a little kid,” Ed said. “That’s what they do. They put things in their mouth.” He quickly intercepts as Karen goes in for a taste of money. Ed learned to keep a careful eye on her after an incident last year where Karen swallowed three quarters and needed to have them surgically removed.
This popular quote from an unknown author resonated with the Young family. Ed wrote the quote in the beginning of a journal he started for his children to share as a way to express their feelings.
“She still shows a lot of love,” Ed said. “She likes to hold hands a lot. She likes to be close and loved.” Among Karen’s most frequently used phrases are “kiss me” and “I love you”.
“I’m not ‘sharp’. My head now is feeling like a mixing bowl— It’s swishing inside and seems like its going around and around. It’s pulsatory inside my head. That happens when I want to use my brain,” Karen wrote in her journal on September 30, 2008.
Karen and Ed are part of a group of friends that meets weekly for dinner. Over the years, they have watched the progression of Karen’s dementia. At Applebee’s, Ed made sure that Karen was seated next to a friend so that she had the potential for social interaction. Ed used to get embarrassed if Karen caused a scene while eating out, but he no longer lets it bother him. Ed has become a source of encouragement for another member of the group to bring their spouse with dementia out more often.
Karen often expresses distress when Ed puts her to bed.
“I noticed that when I pray out loud, she settles down. I say the Hail Mary and Our Father. I keep saying it, saying it out loud to her and it just seems to soothe her and settle her down,” Ed said.
He usually takes some time to himself before joining her for the night. Ed has never considered sleeping separately, even though Karen often wets the bed.
When Ed looks at his wife, he doesn't see her disease.
“I see a wonderful person, the mother of our seven kids and how much she had to labor over the years...She’s done so much for so many people,” Ed said. Though he admits, “Every once in a while I think she’s just going to snap out of it.”
Ed left this note on Karen’s pillow on December 20, 2015 during her three-week stay in a nursing home after being hospitalized for hallucinations.
“It’s a big learning experience. You have to make a total commitment to not only take care of them, but to take care of yourself. You don’t know all this stuff at the very beginning,” Ed said. He prays for strength, patience and understanding at St. Joseph Catholic Church. “I ask for the power to do what I need to do, not knowing what tomorrow will bring.”
Storytelling Process
Inspiration
This story was inspired by my grandparents: my grandmother was showing signs of dementia and my grandfather was intent on being her caregiver. Even though they live over 700 miles away, I knew I could learn about the disease through documenting another family’s experiences.
From the Alzheimer’s Association, I learned that an estimated 5.8 million Americans are living with Alzheimer’s, a number that is projected to more than double by 2050. My grandfather is one of more than 16 million Americans that provide unpaid care for people with Alzheimer’s or other dementias.
Research
I began searching for a couple in Dubois County, Indiana with a similar dynamic. As a community journalist, my goal was always to localize broader issues. Several families turned down my requests to do a story, but still invited me into their homes for contextual interviews to help build my background knowledge about dementia.
I met Ed Young at the local Walk to End Alzheimer’s, a charity event I attended to meet the local dementia community. Right away, he was enthusiastic about sharing his story of caring for his wife with advanced dementia. Ed told me on numerous occasions that he hoped their story could help other families in our community by sharing all the knowledge he had learned “the hard way.”
My first contextual interview with Ed, Karen, and their daughter Dede, lasted three hours. Over the course of six months, I observed and documented Ed and Karen in their home and out in the community, and followed up with more interviews to ensure I understood what I witnessed and to get a sense of what Ed was thinking in those moments.
Building Trust
One of the important steps of building a foundation of trust is to communicate expectations from the beginning. I tried to explain why the reporter and I want to be present for moments ranging from mundane to emotional in order to show an accurate depiction of life.
When we asked Ed if he was familiar with the Saturday Feature story process, he said, “No, but I’ve been reading them every week for 40 years.” This was a true testament to the Saturday Feature’s success in creating an empathic audience. Ed understood that we wanted to see beyond the surface level of his relationship and was willing to show the whole community that it wasn’t easy to care for your spouse.
The time that I spent with Ed and Karen consisted of more talking and listening than making pictures. When it came time to ask about photographing Ed changing and bathing Karen, he didn’t hesitate to give me permission. He trusted that I would photograph the moment sensitively and knew it was a situation that was important to share.
Artifact Analysis
Karens journal was one of many artifacts that I analyzed to get a better understanding of the life she and Ed led. By the time I met Karen, her communication was limited to a handful of phrases but I felt like I got to know her through her journal entries. She had started the journal in 2008 to document the progression of her symptoms. She wrote: “I want to keep a journal (an intimate one) to be helpful for future generations.”
Ed kept multiple binders filled with his research about dementia and care giving, including newspaper clippings, Karen's medical documents, Medicaid and Medicare application information, inspirational quotes, and his own writings to express his feelings.
He also shared with me envelopes full of notes he had left for Karen over the years. Before he retired to care for Karen full time, he would leave her a note and a piece of fruit in the kitchen every morning before he went to work — reminding her to eat and that he loved her. He also collected the scraps of paper Karen had written on as her dementia progressed, from writing words to incoherent scribbles.
One sweet detail I noticed was that both Ed and Karen wrote the word ‘love’ with a heart-shaped ‘o’. When I asked Ed about it, he hadn't even realized and said he must have picked up the habit from Karen.
Synthesis
Part of my reflective process was keeping a story journal. As I got to know Ed and Karen, I listed facts, photo ideas, and quotes from Ed and Karen that I wanted to try to illustrate. I hung the images up to see them on a daily basis and understand how the photos played off one another. These methods helped to facilitate communication with the writer, so that we could analyze what we information and visuals we had, and what we still needed. I also sought feedback from editors and photographers at my newspaper and elsewhere.
When narrowing the thousands of photos down to a select few, I considered:
- Visual Variety: framing, layers, lensing, focal point, direction, distance, angle, movement, mood, and other aesthetic factors
- Emotion: a range of emotions that help the viewer connect
- Information: each photo should asomething different
- Flow: how the viewer’s eye enters, travels around, and exits each photo
.jpg)
Impact
Handwritten note with stickers reads: Love is not a memory. What a wonderful story. Thank you from Karen & Ed family. Sarah, you have a special gift for listening with your heart. Your giving nature and unselfish ways are a blessing to everyone you meet and know. Sarah you are so special. Thank you for being in our lives. Karen & Ed Young Family. PS. Don't forget us. Come around
The story helped even those closest to Ed and Karen better understand them. Karen’s mother is in her 90s and lives independently just up the street from them. On the day that the story published, before Ed even had a chance to read his copy of the newspaper, she called him. She was crying on the other end of the receiver. She had just finished reading the story and told Ed that she didn’t realize what her daughter was going through on a day-to-day basis.
Ed received similar phone calls, cards, and letters from friends and strangers alike. He was stopped in the grocery store by people seeking advice on caring for their loved ones. He’s become a resource for the community and just like he had hoped, his story continues to help others. He advocates for the community’s caregivers support group and raises funds each year for the Alzheimer's Association.
Karen openly sharing her experience with dementia was one of the accomplishments she and her family were most proud of. When she died in 2022, her obituary included a section on her battle with the disease, Ed’s impact as her in-home caregiver, and her final gift — donating her brain to Harvard University Medical School for research.
I have presented ‘Love Is Not A Memory’ at photojournalism conferences, community groups, schools, and universities. My presentations focus on the trust building aspect of my storytelling process.
The Young family was thrilled that the story was shared beyond Dubois County when the photo story was recognized by Pictures of the Year International as the first place Newspaper Local Picture Story. The newspaper spread of the story was also a core part of a team portfolio that was awarded Newspaper Picture Editors of the Year from the National Press Photographer’s Association Best of Photojournalism competition. Additionally, the Indiana News Photographers Association awarded ‘Love Is Not A Memory’ as Best of Show 2018 and the winner of the John Ahlhauser Award, which recognizes photojournalism that “help us to better understand each other and ourselves”.