Research says it happens to someone in the U.S. every 65 seconds.
For some, it’s a grandfather. For others, it’s a grandmother.
Sometimes, it’s a sibling. Sometimes, a friend.
For Tori Kormanik, it was her mother, Shirley Marie Schreiber, who faced Alzheimer’s disease for several years and died two years ago in September.
“So, I’m still gettin’ used to the idea,” Kormanik said. “It’s so weird, it’s so strange. It’s such an odd thing to see.”
Kormanik, owner of Burnin’ Beak pepper jelly in Long Beach, said her mother was diagnosed just before Christmas several years ago.
“I remember my mother saying, ‘You know, I went to the doctor, and he told me, ‘You have dementia,’” Kormanik said. “And she said, ‘Well, I’m almost 80 years old.’ She didn’t want to admit that that was happening. Which, who does?”
The Alzheimer’s Association reports that someone in the U.S. develops the disease every 65 seconds, one out of three seniors dies with Alzheimer’s or another form of dementia and more than five million Americans are living with the disease. For Kormanik, her mother was her first up-close experience with Alzheimer’s.
“It seems to snowball,” she said. “So, it starts out slow, and then it gets more and more and faster and faster. At least, it did for us. I mean, we look back and we say, ‘Ya know, I think she was already developing it then.’”
Kormanik said her mother started waking up in the middle of the night, and she didn’t know why she was awake. She would be wide awake, and she would get up and start watching television.
“And my dad would find her watching TV, and he’d go, ‘I don’t know what’s happening,’” she said.
The Alzheimer’s Association reports that nearly two-thirds of Americans with the disease are women and is the only “top-10 cause of death” in the country that cannot be prevented, cured or slowed.
“It’s not like you go to the hospital and you get treatment for it,” Kormanik said. “It’s not like getting cancer or heart disease. I mean, there isn’t even medication for it. So, there’s so much more that needs to be done.”
Kormanik remembers going to visit her mom when she was still well enough after her diagnosis to go out, and the two of them would go fabric-shopping because her mom had a passion for quilting.
“She made quilts for every family member that she knew and for my friends’ kids […] her quilts are everywhere in this country, it’s amazing. Hundreds of hundreds of quilts for people,” Kormanik said. “She would just scour the whole [store], and we would exclaim on all these fabrics and how beautiful they were. And she loved color, like bright colors. Oranges and reds and yellows and greens and blues, and she loved soft fabrics. She would stay up all night and quilt.”
Her mother won first prize at a county fair for her very first hand-quilted quilt she ever made. Kormanik said her mother had been one of the younger ladies in the contest that year, and her mom said “all these old ladies” came over to look at her stitching and were not too happy that she had won on her first entry.
One day, as the disease progressed, Kormanik’s mother decided to cut some of the pieces of that very quilt, as if she were going to to sew them together to make a new one. The original quilt is irreparable.
“Alzheimer’s is a devastating and fatal disease impacting millions of Americans and threatening to bankrupt Medicare,” Harry Johns, Alzheimer’s Association and Alzheimer’s Impact Movement (AIM) president and CEO, said in a press release last month. “But much-needed new funding is accelerating the pace of progress, fostering collaboration and data sharing and bringing us closer to our vision of a world without Alzheimer’s.”
A new federal law signed into law last month will bring the largest-ever funding increase to Alzheimer’s and dementia research at the National Institutes of Health (NIH), according to the release, which calls Alzheimer’s the “most expensive disease in the country.” The Alzheimer’s Association and AIM advocated for the funding increase of $425 million, and the bill was signed into law Sept. 28– just ahead of Mental Illness Awareness week, which is commonly observed the first week of October.
Last year, Kormanik walked for her first time in the Alzheimer’s Association Walk to End Alzheimer’s, which is organized annually in more than 600 communities across the city, according to the event website.
Kormanik said that, last year, when she did the walk, she didn’t share the experience with anyone because she was still grieving. This year, she committed to raising funds with her walking effort, and she has raised $540 so far. She will be walking alongside the hundreds of Long Beach participants on Saturday, Oct. 13, at Rainbow Lagoon Park.
A resident of Long Beach for nearly 10 years, Kormanik brought her mother’s love for cooking to life through her small business, Burnin’ Beak, where she handmakes pepper jellies in all varieties.
“[My mother] loved to cook, and she loved food […] and she loved her kids,” Kormanik said. “And she was a good cook […] I remember, as a kid, just being in the kitchen with her and watching her cook and learning how to cook. She had tons of cookbooks, and she followed recipes, and she exchanged recipes with her sisters […] nobody exchanges recipes anymore. And there was no Pinterest back then!”
Burnin’ Beak officially launched in 2011, and the product is on the shelf at five local brick-and-mortar locations. She also bring her pepper jelly to festivals and community events all over Southern California. With the help of her sister, Kormanik’s jellies have crossed state lines and are for sale in her hometown of San Antonio, Tex.
“One thing I like about the product is that it’s a basic product […] it doesn’t have fruit in it,” Kormanik said. “It has a flavor, but not a fruit flavor, and that gives it the ability to be versatile. So, you can combine with other ingredients. You can make a sauce out of it, you can make a glaze out of it […] you can mix into other ingredients and make a marinade for meat or fish or chicken out of it. Or you can make a salad dressing […] it gives it a little bit of a tang and a little bit of a fire. As my husband says, ‘Your only limitation is your imagination with what you can do with it.’”
She said the most unusual thing she has tried it on yet was vanilla ice cream.
“It’s just like, ‘Wow! What is this?” she said, describing how the sweet vanilla and the tangy jelly go together.
As the holidays approach, Kormanik said her customers can most likely expect a few seasonal surprises. Her family gathers in San Antonio for Thanksgiving each year, and the jellies make a regular appearance atop their traditional family meal.
She said it was during their last Thanksgiving with their mother when their father unexpectedly ended up the hospital, forcing “[us] to become the parents.”
“At the height of when my mom was going through this, [my dad] ended up– on Thanksgiving Day– […] on the bedroom floor having a seizure,” she said. “And he was in the hospital for about six weeks for the seizures […] something burst, and he had to have a surgery. He was in the hospital, and my mom was at home […] and she was having a hard time, and so we got her into an assisted living memory care facility. And then when my dad got out of the hospital, he went to the memory care to be with her. That was about eight months, and that’s when she passed. Things were just thrown at us, and we had to make decisions for our family because they weren’t able to– neither of them.”
She said her parents were right at 60 years of marriage when her mom died– “All their lives. A lifetime.” Describing her father’s upbringing as very serious and straightforward, Kormanik said she thinks one of the things her father loved most about her mother was that she had a big personality.
“She was so gregarious– and she loved that word,” Kormanik said. “She loved people and being with friends, and she loved children. She was so outgoing and so fun, and she was always smiling and laughing.”
Pictured above are Tori Kormanik (left) and her mother, Shirley Marie Schreiber (right). Kormanik is walking in the 2018 Walk to End Alzheimer’s in honor of her mother, who fought the disease for years before she died in 2016.
“We were able to tell [my mom], at that point, that, ‘Once dad gets out of the hospital, he’s going to come and join you here,’” Kormanik said. “And she was OK with that, and he was OK with that […]. She didn’t want to be without him, she didn’t want to live without him in a different place.”
As she prepares for the upcoming Alzheimer’s walk for her mother, Kormanik remembers how much hope she felt at the event last year, rather than sadness or grief.
“Being at the event, with all the other people, and knowing what they’re going through, and knowing what they’ve been through, and knowing how much they love their family members and the support of everyone who was there […] it was a joyful event,” she said. “It wasn’t a somber event. It could’ve been, for sure, it could’ve been. But you have to be hopeful about it, rather than having a defeatist attitude about it. I mean, because, otherwise, where is the hope? So, it was the atmosphere, a lot of it was the atmosphere, and that’s why I’m excited about doing [the walk] again this year.”
The Alzheimer’s Association funds research, care and support services for people with the disease and their care-givers. Eighty-three percent of the help provided to older adults in the United States comes from family members, friends or other unpaid caregivers, according to the association’s findings.\
“I think the support that they have for people, for not only for caregivers for family members, but just the community support is valuable to people these days,” Kormanik said. “Plus, I think the research, in the long-term, is going to make a difference.”
