WILLMAR - With two family members living with dementia, the Mitteness clan knows well the daily struggles, the pain and the small happy moments of Alzheimer’s disease and other forms of age-related dementia.
Tears gather in Alan Petersen’s eyes as he says, “It just takes everything from you.”
But there’s also an enduring love.
Petersen visits his mother, Betty, at the nursing home twice a week, and although she hasn’t said his name in more than a year, “that isn’t the most important thing,” he said. “She’s still my mom.”
Kristy Nystrom makes sure to take her children, ages 1 and 3, to visit great-grandfather Don Mitteness, who has had Alzheimer’s for a decade.
“He just brightens when they come. It doesn’t matter to me if he knows who they are. What matters to me is they see this man who is happy,” she said.
Along with the Floyd and Pat Tollefson family, they are honorary co-chairs of the Willmar area Walk to End Alzheimer’s, taking place Saturday morning at the Civic Center. Forty teams and almost 400 walkers are participating to raise awareness and money for Alzheimer’s research and support.
Similar walks are being held across the U.S. this fall, underscoring the growing urgency to help families and communities care for the estimated 5 million Americans with Alzheimer’s and related dementia.
The experiences of the Mitteness and Tollefson families are among hundreds of local stories illustrating the toll of dementia.
The disease appears to run in the Mitteness family, Petersen said. Among the family’s oldest generation, 80-year-old Betty Petersen of Clara City and 83-year-old Don Mitteness of Benson, who are sister and brother, both have dementia and live in skilled care homes.
Since the diagnosis - 10 years ago for Don, six years ago for Betty - the learning curve for their family has been steep.
“We didn’t know much about it back when Mom was first diagnosed,” Petersen said.
Slowness to recognize what was happening, coupled with reluctance to admit it, is common in many families, and theirs was no exception, he said. “My dad covered up for Mom. He didn’t want to admit that Mom was having trouble.”
He remembers seeing her behind the wheel one day, making a dangerous turn onto the local highway.
“She didn’t know it was a risk,” he said. “I saw it happen and I didn’t want to admit it to myself. … We let Mom drive too long.”
For many, the dementia journey is long and family caregiving often becomes stressful and exhausting.
Pat Tollefson, 82, was formally diagnosed in 2007 “but we knew she had it before that,” said her daughter, Kathy Thonvold, of Willmar.
For the past two years Pat has been living in a memory unit, where Floyd, her husband of 62 years, visits twice a day.
Thonvold and her sister, Sharon Tollefson, make sure their father gets to weekly Alzheimer’s support group meetings.
Care for the caregiver is essential, Thonvold said. “It’s so important to connect with other caregivers and other people who are going through the same thing. This is a journey. It makes the journey easier if you are not alone.”
Because families often don’t know what to look for or what to expect, education is critical - and the earlier, the better, Nystrom said. “How do we as families take it upon ourselves to learn what it’s really like? I don’t think we did a good enough job of being realistic. You wait and you deny.”
Participating in the Walk to End Alzheimer’s is a way to advance the support for research and services but, more than this, it’s a chance to connect with others dealing with the same challenges, the Tollefson and Mitteness families said.
Nystrom said she’s often amazed to hear how many people have direct experience with Alzheimer’s. “Everybody you know knows someone,” she said. “It’s like a big huge family event. We’re all doing this together.”
IF YOU GO
What: Willmar Area Walk to End Alzheimer’s
When: Saturday. Registration, 9 a.m.; opening ceremony, 10:15 a.m.; walk, 10:45 a.m
Where: Willmar Civic Center
Why: Walkers have a goal of raising $89,500 for research on Alzheimer’s disease and related dementia and for community services.
Info: 1-800-272-3900 or
www.alz.org
