Kansas woman’s YouTube home show reveals ‘our secret’: Her husband, 43, has dementia
A wife, a mother, a nurse, Leslie Weiser of Bonner Springs kept what she called “our secret” to herself for months — involving, as it did, the private life of her husband, Jason, whom she has loved since she was in high school.
Until Feb. 20 of last year, in fact, there was nothing on her new, self-produced YouTube channel, “A Charming Abode With Leslie Weiser,” to suggest it was about anything other than what it said it was: a suburban mom with an eye for decorating, offering tips for making a house a home. Her following in the beginning was modest.
A French toast video: 400 views.
Super Bowl food ideas: 718.
Some big early winners: Christmas table ideas hit 20,000 views; dining room centerpieces hit 30,000.
Then she revealed her secret:
“‘A Charming Abode’ is all about making a home charming,” Leslie said in the video, sitting center frame and a bit tentative. Blond hair to her shoulders, she wore a black blouse, sat in a chocolate-colored chair against mocha-colored walls. Her eyes would soon mist. Her voice caught with emotion.
“Home to me is who you share it with…” she said. “And who I share it with is my husband, Jason.” She laughed nervously. “I’m going to be a hot mess in this video,” she predicted, then took a breath.
“Jason has dementia. And even more specific, he has Lewy body dementia. He is very young. He is 45 years old.”
Death from this type of dementia, second in frequency only to Alzheimer’s disease, typically comes within five to eight years from the date of diagnosis, as what are known as Lewy body proteins build in the brain. Jason had been diagnosed with an unspecified dementia in 2018, at age 43. Twenty months later doctors gave it a name. The couple knew that Jason, a major in the Air Force Reserve whose problems, they suspected, might have been hastened years ago by a traumatic brain injury in Iraq, was unlikely to live another decade.
“We haven’t really told a lot of people. …” Leslie says on the video, wringing her fingers. “It’s to the point where we can’t really keep it hidden anymore.”
The video has logged more than 430,000 views so far.
Suddenly, a YouTube channel about beautifying homes has become much more: About a devoted couple who met at age 15 and about what, beyond knickknacks, it really means to create a beautiful home.
Though far from a YouTube star, Leslie now has close to 44,000 subscribers and, as was her intent, is drawing in enough YouTube ad money that, in June, she could quit her job as a neonatal intensive care unit nurse at Advent Health Shawnee Mission to take care of the most important patient in her life.
“I feel like everything happens for a reason, so I am going to use all of it,” Leslie, 47, told The Star of her knowledge as a nurse. It was a career that came to her late, after she cared for her dying father. “I’m going to take care of Jason because he is my best friend, and the love of my life.”
She breaks into tears in her video. “This is a person that I have been with for 30 years. He’s in there, but not all the time,” she says. “So it’s really hard. But we’re so blessed. … We’ve had an amazing life. And we still have life to live, guys. We still have things to do. And we’re going to do them together.”
About 80% of the 6 million people with Alzheimer’s disease — 1 million with Lewy body, plus other dementias — are cared for at home, according to the Centers for Disease Control and Prevention, placing an often phenomenal emotional, physical and financial stress on caregivers. That Leslie Weiser is facing a difficult path is hardly novel. Starting a YouTube home decorating show as part of the solution is.
Hundreds of positive comments immediately poured onto her page.
“My heart aches for you. My husband died 13 years ago at 66 years old from Lewy Body. I took care of him until the day he died and I HAVE NO REGRETS!!!!!”
Another: “Many moons ago Jason was my commander! I … will be praying for your family as you go through this storm!”
More: “My husband was young when he was diagnosed with LBD. I am walking this journey with you as I care for him.”
The Weisers have lived in their Leavenworth County home going on 18 years. It’s 3,000 square feet, built in 1996, with high ceilings, a two-sided fireplace, white stone countertops. They raised their two children there. Kelsie Vallacqua, now 29 and living in Olathe, is married, and works as a senior social media analyst. Makayla Troyer, 25, is a Spanish interpreter living in Florida with her husband and is soon to have her second child. She once competed for Miss Kansas.
On a recent Friday before noon, the Weisers opened their home to a reporter and photographer just before Leslie’s 107th video would go up on her site. Jason, 46, was there — short and stocky build with a military-style haircut and mischievous smile, like a kid about to pull a prank.
“The main thing that attracted me to Jason is his sense of humor. He’s still hilarious,” Leslie said.
The new video shows Leslie decorating her white mantel for spring. “I love the pops of yellow,” she says in the video. She intertwines lemon and eucalyptus garland, places lemons in a basket. “Yellow is so pretty for spring.”
But among the videos on autumn candles or whitewashing a fireplace, the ones featuring Jason, titled “Living With Lewy Body Dementia,” are the ones that each attract tens of thousands of viewers.
In episode one, Leslie talks of her fears of going to work at night at the neonatal intensive care unit, and how she knows life needs to change. “There are times where our gas burner was on all night,” she shares.
Jason comes on camera. They speak of his auditory hallucinations: hearing organ music in the middle of the night. Sleep is disrupted. He’s either up all the time, or, his brain exhausted, he sleeps 12 to 14 hours or more. His hands tremble. In his sleep, his legs move like he’s running. His short-term memory is shot. Jason remembers the distant past, but often can’t recall what he had for breakfast.
“We don’t really know where this is going to go, or how this is going to go,” Leslie says, then turns to Jason. “What do you feel like the future holds for us?”
He deadpans. ”Diapers.” Then smiles.
“Everybody’s got goals and dreams in life,” Jason says. “You’ve got a lot of things that now start to slip outside of your control. And you realize that a lot of things you’ve worked hard for, the goals you’ve set for yourself, the things you’ve wanted to do are now not going to happen. It is what it is. …
“I’ve had to realize that while I’m still not wrong, I’m just not as right as I used to be.”
In episode 2, Jason comments on the first video and wonders why his eyes look so “spaced out.” He sometimes forgets to eat, and then forgets that he has forgotten. In the month since the first video aired, they noticed a number of acquaintances starting to baby Jason, treat him differently. Part of Leslie’s hope in starting the channel was to raise awareness, let people understand the reasons behind the changes in Jason’s behaviors. But they don’t want to be patronized.
“I’m just me,” Jason says in the episode, then talks about his recent foray with paramotoring, being parachuted up into the sky on the equivalent of a flying go-kart.
“We still have life to live and dreams to fulfill,” Leslie explains. “We don’t have time to waste.”
But Jason admits that the activities wear him out.
In episode 3, the couple reveal more of the effects of Lewy body, as it’s related to Parkinson’s disease. Jason’s legs spasm, shaking to the point that they wake him up. The muscle in his hands will sometimes tighten and contort. “It’s like a gigantic charley horse,” Jason says. “You can’t move your hand.”
He grows more confused as his brain’s executive functioning worsens. The younger the onset of the disease, the faster it often takes hold. Jason starts projects, but quickly gets confused and overwhelmed. “Analysis paralysis,” Jason explains. “I stop and I don’t even know what to do.”
“As a caregiver,” he tells Leslie, “I need her to stop me and get me to realize that I’m doing something illogical. Or I need to take a break, refocus and listen, ‘cause I will be stubborn.”
One video shows a full day in their lives, melding both the decorating and Jason’s dementia. It has so far drawn 114,000 views. As much as the show is about raising awareness and taking care of her husband, she said, it is also therapy.
Caregiving is exhausting and isolating.
“With the Lewy body dementia, l have no control,” Leslie said. ”But I have control in my home, just cleaning and decorating. That gives me a sense of control. Number two, I put it out there to not feel so alone. It helps validate what you’re feeling and what you’re going through.”
The Weisers, like others, never anticipated facing a progressive dementia, especially at 43.
The two met when they were 15. Leslie Logan went to F.L. Schlagle High School in Kansas City, Kansas. Jason, whose father was in the U.S. Navy, went to Washington High School. They met in 1989 through a mutual neighborhood friend, Kyle Gearhart, whose life would end violently.
“Kyle was Jason’s best friend. He was the best man in our wedding,” Leslie said.
She became pregnant at 17. She and Jason, already planning a life together, were married in May 1991. Less than two weeks later, her mother died of lung cancer at age 53. (Her father would die of the same illness nine years later.) Kelsie was born in November. The next month, near Christmas, Kyle was murdered for the Ford Mustang that he had painstakingly restored.
“I will tell you,” Leslie said, “because a lot of people ask, ‘How do you handle what you’re going through with Jason?’ It is because tragedy and loss are not something I have never dealt with — all the way back to Kyle being murdered. In the same year, my mom died.”
Upon graduation, Jason enlisted in the Air Force. Together, the young family were stationed in Maine, then Phoenix, where Makayla was born in 1996, then Boston where Jason, while still enlisted, would go on to earn a bachelor’s degree and, later, an advanced degree at night from from Harvard University’s extension program.
The family returned to Kansas City, as Jason, in 1999, left active duty. He joined the Air Force Reserve, earned another degree. He rose through the ranks, became an officer. The family was prospering. He became a business consultant. Then, in 2003, during one of what would be six deployments lasting three to nine months, he was stationed in Iraq.
“I was standing on the apron of a runway and a mortar came in and blew up right in front of me, and blew out my eardrums and knocked me out. And that caused a brain injury,” he said, although it wasn’t diagnosed at the time. “You know, in the military, it’s all about just get up, brush it off, get going if you can.”
So he did. In 2008, he was deployed to Afghanistan.
Jason returned home. Leslie entered nursing school in 2009. Time passed.
As with Alzheimer’s, the precise cause of Lewy body dementia is not known. A paper published in 2018 in the Journal of Alzheimer’s Disease does show a correlation between traumatic brain injury and the appearance of the disease at younger ages.
Jason seemed changed.
His daughter Kelsie was contemplating colleges and, in 2012, would attend Pittsburg State University. She told her father multiple times that she was looking at the school. He, nonetheless, kept asking where she was thinking of going.
“It became obvious that something wasn’t right,” Kelsie said. A social media expert, she has her own YouTube channel about her life, infertility and her battle with four miscarriages. She gave her mom the YouTube idea.
“It eventually became like, ‘Are you kidding, Dad? Are you for real?’” Kelsie said. “It got to the point where, like, I genuinely don’t think he remembers that he’s asked me 12 times.”
Traveling for work, he became lost. He’s traveled to Washington, D.C., often — had the same routine, stayed at the same Virginia hotel. “I’m calling her, because I find myself getting off the train in Annapolis, Maryland,” Jason recalled. “That’s not just a little bit off. Like, ‘Oh, where am I? How did I get here?’”
Doctors with the Veterans Administration hospital, Leslie said, chalked it up to post-traumatic stress disorder from Jason’s deployments. He saw psychologists and psychiatrists, went through cognitive behavioral therapy. She was always skeptical.
“I felt they were hooked on that,” Leslie said of PTSD. “And I was like, ‘There is more to this. There is something wrong.’”
He was finally diagnosed at the University of Kansas Health System’s Memory Clinic. The diagnosis hit hard.
“Humbling” and “deflating,” he said he felt, but also cheated.
“Not cheated, like it’s unfair,” Jason said. “Everyone gets dealt their cards, you deal with the chips as they fall. I had 50 things that I still wanted to get done that were huge.”
He dreamed of retiring early, buying a sailboat and sailing around the world.
Instead, he has stopped work. He receives Social Security disability. The Air Force still covers the couple’s medical insurance. The YouTube channel is bringing in enough ad money, $3,000 in some months, $9,000 in others, Leslie said, that she felt she could stay home full time.
The illness will worsen. What medicines are available are the same as those used for Parkinson’s disease, to sometimes help control movement difficulties. Alzheimer’s medications sometimes help in slowing the cognitive decline.
“There is no way to stop it. There definitely is no cure,” said neurologist Jeffrey Burns, co-director of the KU Alzheimer’s Disease Center and director of the hospital’s Alzheimer’s and Memory clinics.
Where Alzheimer’s has about a 10 to 12 year average from the diagnosis to death, he said, Lewy body’s is shorter, seven to 10 years, often less for younger patients.
At the end, life is often taken by complications. Patients typically become bed-bound. They have trouble swallowing and lose weight. Pneumonia develops. Kidneys fail from dehydration.
“It is physical issues that are directly related to the dementia,” Burns said, “but it’s not the dementia, itself.”
By then, many patients need 24-hour care.
Leslie has not decided how much of that, if any, she will show in her videos.
“Jason is my husband and my best friend,” she said. “I want to protect him.”
The enormity of what she faces is sometimes overwhelming.
“My mom definitely is very outwardly optimistic,” Kelsie said. “But I know, behind closed doors, she’ll cry to me. She’ll cry to my sister. … My mom’s the type where, when she’s upset, I usually get a phone call. She’s like, ‘Can you talk?’ Then she kind of just lets it all out, and cries it out, and we cry it out together. Having that time to just get it off your chest, I think is really important to her.”
Never as important as her goal: To be with Jason, to care for him, and share their life together.
“I think it just helps people who might be going through a similar situation but not understand how to interact with someone with dementia,” Jason said of the YouTube channel. “And then the message of positivity. There’s a lot of negativity in the world. There’s a lot of negative stuff that comes out on the comments that’s unfortunate.”
Some commenters criticize Leslie on both her designs — “People can be so mean,” she said — and for sometimes talking more than Jason, unaware that Jason isn’t always capable.
“But I think our channel tries to remain positive and upbeat and happy,” Jason said. “Life is too short for anger.”
Never too short for beauty.
“I like to spread kindness,” Leslie said. “It’s one of my favorite things.”
