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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.”