FL woman sees toll of disease through uncle’s early onset condition
Editor’s note: In recognition of September as World Alzheimer’s Month, this is the first in a series on the disease.
Sarah Blank expects to have mixed emotions at Target Field on Saturday. There will likely be a festive atmosphere, and her two children are excited to go. However, the situation driving the Forest Lake family to the stadium is grim.
The Blanks are participants in the Walk To End Alzheimer’s, which raises funds for the Alzheimer’s Association. Blank, 31, has seen early onset Alzheimer’s transform her fun-loving, successful uncle into someone who requires constant supervision and assistance at the age of 49.
While Alzheimer’s continues to attack Steve Weyenberg, his immediate and extended family must also deal with the fact that the disease has genetic links and no cure. In fact, no way is known to prevent the nation’s sixth-leading cause of death, or even to slow its progression.
“It’s hard to sit back,” Blank said. “I feel like it’s the only thing, really, that we can do to try to raise more awareness, or maybe, finally, hopefully, someday help our children.”
Weyenberg was an active uncle to Blank and her brother, Keith Johnson, as they grew up. He lived in his parents’ former house in Shoreview and frequented the White Bear Lake home of his sister, Caroline Johnson, and her husband, Mark. Weyenberg eagerly coached baseball and gave dirt bike lessons.
“He would have us out all the time to play tennis or miniature golf,” Blank said. “He was always at our house hanging out with us, staying over for dinner.”
He took his niece and nephew in for a year when Caroline and Mark built a new home in North Branch 11 years ago, and he served as an usher when Blank married her husband, Jake.
“He’s always been so giving, so loving, family oriented,” Blank said. “For a man who didn’t have children, he’s really gone above and beyond to make us all feel like his own.”
Blank’s uncle also had a successful career as an accountant, was married and got to pursue his interest in traveling and photography.
Ever so slowly, though, the family began to notice changes in him. It started innocently: repeating the same stories, forgetting everyday details.
Weyenberg’s situation took a turn for the worse as he stopped working and went through a divorce. Those sad events were easy for his relatives to chalk up to stress, but a red flag emerged when in late 2009 he lost his house, which his father had built, to a short sale.
“I think that’s when we finally realized maybe there’s something wrong, because he was so good with his money,” Blank said, noting she recalls discovering at that point stacks of unattended mail at her uncle’s house. “He always had a job, he never had problems with bills, he had bought the house.”
Caroline Johnson remembers in detail her brother telling her the bad news.
“That’s what really kind of prompted me,” she said. “I got that call from him and he was in a panic, and I never heard him sound like that.”
The following June brought another unsettling incident, as Weyenberg became lost while leaving his parents’ 50th anniversary party.
“I remember he got pretty upset and he said, ‘There’s something going on with my head, and I need to know what’s going on,’” Johnson recalled.
There is a history of Alzheimer’s in Johnson’s family, so she and Blank began seeking medical opinions.
“I don’t think the doctors believed us that that’s what we wanted to pursue,” Johnson said. “It was kind of shocking at that age.”
They encountered skepticism even from other family members. Coming to terms with Weyenberg’s condition was hard for Kate Johnson, Keith’s wife. She initially attributed it to stress from his personal struggles.
“He was going through a lot of things,” the Hugo resident said. “We had struggles with that, because you don’t want to believe that that’s what it is.”
But Caroline Johnson recognized shared symptoms between Weyenberg and her husband’s mother, who was in a nursing home. Her suspicious of Alzheimer’s was confirmed late in 2010.
After the diagnosis
Weyenberg had moved in with his sister and her husband before the diagnosis. Caroline Johnson and her other brother, Joe Weyenberg, of Stacy, agreed to keep as much of the burden as possible off their parents, who have moved to their cabin in Wisconsin.
At first, the living arrangements in North Branch worked well, but eventually Weyenberg moved to his brother’s in Stacy. Their parents have taken Weyenberg along to Arizona for several consecutive winters, though that appears unlikely this year.
His condition continues to worsen at a quick pace. Weyenberg now has trouble communicating and filtering his thoughts. This year’s Fourth of July family tennis tournament was marred by his inability to participate.
Soon, Caroline Johnson expects, the family will be looking into care in a nursing home setting.
Then there is the toll on the youngest family members. Alzheimer’s has forced a tough issue on the children of Weyenberg’s niece, nephew and their spouses.
“Of course, I absolutely love Steve,” Kate Johnson said, “But that’s probably been the hardest part for our family: our kids watching their dad deal with that.”
Walking for a cure
The family’s experience with Alzheimer’s has motivated the members for this weekend’s event.
Donate to the family’s team at http://act.alz.org/goto/alzfree.
“As we hold all of our memories with Steve deeply in our hearts, his own memories are quickly slipping away from him,” Caroline Johnson wrote in a letter seeking support. “We are walking for Steve on Sept. 21 to ensure that families like ours never have to go through the ‘long good-bye’ we are going through right now.”
She also wants to walk in support of the Alzheimer’s Association’s search for a cure.
“I felt like we had to do something,” Johnson said. “The more I read about this early-onset, the more I realize that it’s gene and family (related), which concerns me about my children and my grandchildren.”