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Losing her husband to dementia, woman has her bridal gown made into a soothing quilt

by Lisa Flam / / Source: TODAY Contributor

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The gown was made from ivory satin with long, flowing silk-chiffon sleeves, and Janet McKee wore it at the start of something beautiful: her nearly 40-year marriage to Mark McKee, the “good-looking guy” who first asked her out in college, the man she’s been devoted to ever since.

“We were Ken and Barbie, we were 1 and 2,” said Janet, 59, who married Mark on March 18, 1978, in Cozad, Nebraska, when she was 19. “We just loved each other so deeply. It was pure joy.”

When Mark, now 61, was entering the severe stage of dementia, Janet had her lace-trimmed gown turned into a beautiful quilt so she can wrap herself in the memory of that joyous day. She plans to use the quilt when Mark’s final days arrive.

Woman losing husband to dementia has wedding gown turned into beautiful quilt
A close up of the wedding gown quilt that Janet McKee has ordered to use during her husband's final days.Janet McKee

“I know that I’m going to be spending some long days and long nights with Mark as he exits this life,” Janet McKee, of Lexington, Nebraska, recalled telling her quiltmaker in 2015. “A quilt made out of my wedding gown would be soothing and special. It would be a comfort to me during those times.”

Mark, who worked as a cattle feeder and farmer, was diagnosed with frontotemporal dementia with ALS variant about 10 years ago, though Janet believes his struggle with the illness began in his late 30s or early 40s.

It's the same progressive condition that afflicted his mother, who died at age 59; his brother, who died at age 47; and one of his sisters, who is ill with the disease, Janet said. Mindful of the condition when she married Mark, Janet chose to forgo having children to avoid passing the illness to another generation.

Woman losing husband to dementia has wedding gown made into beautiful quilt
The happy couple, Janet and Mark, posing for their engagement photo.Janet McKee

“I loved Mark more than I hated the disease,” she said. “Mark and I were soul mates from day one.”

As Mark’s illness progressed, though, Janet was heartbroken to realize her marriage was, in a sense, over. “It’s been torn from us,” said Janet, who retired early from teaching fourth grade four years ago to care for Mark.

One night when she was home with a man she no longer recognized as her husband and struggling with her shifting identity, Janet remembered her wedding and happier times.

Woman losing husband to dementia has wedding gown made into beautiful quilt
"We just loved each other so deeply," Janet said, seen here with Mark on their wedding day.Janet McKee

“I was thinking about my loss of my love and my husband and how I missed those arms around me,” she said. “I thought, that dress is upstairs in a box. It’s something I can hold on to. It’s a sweet memory of the past.”

Online, Janet found Elaine Penkava of Loveland, Colorado, who makes quilts from wedding gowns. In the fall of 2015, Janet and Mark drove the gown 350 miles to Loveland, and shared their story.

McKee said the quilt maker told her: “I’m going to think about you two, think about this dress and when I begin cutting into this dress, it will speak to me.”

Woman losing husband to dementia has wedding gown turned into quilt
Janet McKee's lace-trimmed gown was made of smooth ivory satin, and became a beautiful wedding gown quilt.Janet McKee

When Janet drove six hours back to pick it up last year in the spring, she was bewildered. The bottom was quilted just as McKee envisioned, but she didn’t understand the use of the puffy sleeves on upper corners of the quilt, on either side of the bodice of the dress.

But the more she looked at it, Janet came to see an angel, the sleeves forming her wings.

Woman losing husband to dementia has wedding gown turned into beautiful quilt
As she studied her new wedding gown quilt, Janet McKee saw the sleeves of her gown as the wings of an angel.Janet McKee

“I thought, ‘Oh my goodness, what a gift,’” Janet said, adding of Penkava: “She thought I would need an angel to wrap her arms around me through this journey.”

The gift, though, was unintentional. Penkava created the design she thought looked best with those beautiful sleeves. “However she perceived her quilt is exactly the way it should be,” Penkava said. “I am thrilled that it touched her heart.”

When the McKees received the quilt, Mark understood it had been his wife’s gown and he “was extremely proud of it,” Janet said. In March, Mark began living at a residential facility full time, and he has lost much of his cognitive ability though he remains physically healthy.

Woman losing husband to dementia has wedding gown turned into quilt
Mark and Janet McKee together late last year.Janet McKee

Janet doesn't know when their final farewells will be. She stores the quilt in her cedar chest; she will know when the time to take it out is right. “It’s waiting to offer me what I need at my point of loss,” she said, adding that it represents “a perfect, beautiful, loving marriage.”

“It’s a physical reminder,” she said, “of having been blessed.”

TODAY.com contributor Lisa A. Flam is a news and lifestyles reporter in New York. Follow her on Twitter and Facebook.

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