Caregivers share stories at HCF community forum
Caregiving is a complicated and life-altering job.
That was made clear by three caregivers who ranged in age from the mid-20s to middle age to a senior citizen. They told their personal stories at the Hudson Community Foundation forum “For Better or Worse: Dementia, Memory Loss and Caregiving” last week.
First to speak was former Wisconsin governor Martin Schreiber, whose wife Elaine was diagnosed with Alzheimer’s Disease 12 years ago. It was clear from his presentation that humor is an important coping skill Schreiber uses. He kept the audience engaged in a serious discussion of a difficult task while demonstrating the importance of not taking it all too seriously.
Schreiber and his wife Elaine have been together since they met at age 14. Schreiber said his wife exhibited great courage in the face of her diagnosis and that has been a source of strength to him as she becomes a different person from the woman he married.
Schreiber has just completed a book, “My Two Elaines,” that will be published soon. He told the audience to think of dementia as a funnel used to view life.
“Before, when you look at life through the bottom you can see a wide picture of things,” he said. “After dementia, you look from the wider end for a much narrower view of the world. That’s what it does to a person.”
Schreiber said he needed to let go of the Elaine he knew and raised a family with and learn to be a good caregiver to a new person, Elaine as she is now. He said medication did not significantly impact Elaine’s condition but he believes exercise and socialization were helpful as well as a glass of wine.
“Elaine was four weeks ahead of the doctor’s recommendation about the wine, but two weeks behind when it came to the exercise,” he said.
Schreiber said Alzheimer’s is not a “chicken casserole condition,” unlike recovering from an operation or some illness.
“We all know about bringing food to a family, but Alzheimer’s isn’t like that. What is happening isn’t clear to others. They don’t know how to react or what to do. But you owe to yourself and others to understand the disease and talk about it,” he said.
Schreiber had some advice for caregivers and families who are in his situation. He employs what he calls “therapeutic fibbing.” Elaine asked him about why her parents hadn’t come to see her. He responded by telling her they were dead.
“It was an awful thing to do. It was a terrible shock to her. I realized I needed to live in the world she was living in, where they were still alive,” Schreiber said. “You can’t argue with Alzheimer’s. It is better not to try.”
Schreiber said once you let go of the person you used to know, you can find moments of joy with them in their new world. He also learned that he couldn’t do it alone.
“It was foolish and arrogant of me to think I could do it by myself. I was not doing my best for her and I was stealing those moments of joy,” he said.
Schreiber sought help from the Alzheimer's Association where a counselor helped him understand the importance of taking care of himself in order to continue caring for Elaine. He said the most helpful thing in his journey has been the affirmation of what he was up against.
Arlen Strate is a dairy farmer in Roberts who lost his wife of 39 years, Laurie, to young onset dementia just last month. Laurie, who was 60 when she died, was diagnosed at age 48 and didn’t want people to know.
“I had the longest Pinnochio nose for the longest time, not telling people. But eventually the truth was there,” he said.
Strate said as his wife’s disease progressed, he had to problem solve creatively. He said he usually came up with a plan while he was milking cows. When his wife continued to flood the upstairs bathroom, he put a drain in the floor. When she consistently overfilled bowls with cereal and poured all the milk in the container over them, he replaced them with smaller bowls and only left a small amount of milk in the container. When she continually stripped their bed, he strapped down the bedding. And when she tried to make chicken and turned on the self-cleaning program of the oven, he got appliances that locked.
“You know those cartoons where the washing machine overflows with suds — well that really happens when you add a whole bottle of detergent,” he said.
Strate said it took several years to find a facility for Laurie when he could no longer keep her safe at home. And he was actively involved in helping her adjust to her new surroundings.
But like Schreiber, Strate said he had to come to terms with a wife who no longer knew her family and wasn’t aware of the changes in her life.
“When you have dementia, you don’t have worries. But caregivers need help,” Strate said.
Strate said he needed to vent about his feelings, and people like those at his church who “just listened” were incredibly helpful.
Strate said Laurie’s care cost around $11,000 a month in the time leading up to her death. She was finally granted disability but “the financial stuff was very tough.” He also noted that 70 percent of caregivers die before the person they are caring for does. In the end, it was hard to see her the way she was and I was glad it was over for her.”
Strate said what happened to his family is happening throughout the county and “we have to do something about it.”
Emily Smith’s dad, Craig, has young onset dementia as well. A Hudson volunteer fireman and a ironworker, his memory began to fail in his mid-40s. A doctor told him that was normal, but Smith said her dad was not experiencing something normal.
It took several years and some misdiagnoses before the family learned he had frontotemporal dementia. As the disease progressed, his behavior became inappropriate around his teenage daughter and to protect her, his wife Jennifer divorced him. Smith said her mother did the right thing, not just to protect her daughter but to safeguard the family’s finances so that they would have something to live on.
Smith said her role as her dad’s chief caregiver developed over time and now she manages everything for him from his care at a local memory care unit to his finances and legal status.
She said she was floundering under the impact of her dad’s condition until she received help from Nancy Abrahamson, Dementia Care Specialist for the Aging and Disabilities Resource Center of St. Croix County. As she has come to understand her father’s condition, she is working with Abrahamson to educate the community about dementia diseases like FTD.
“I want my Dad, all people like him, to live in a safe place that does not judge them but understands how to help them,” she said.
That is precisely what the Dementia Friendly Communities Coalition is about. The effort has been spearheaded by the St. Croix Valley Foundation. Program director Angie Pilgrim told the forum audience that a group of 30 people from around the county has come together to take on the task of making communities more supportive of those with dementia and memory loss and those who care for them.
The forum was recorded by the River Channel and can be viewed at this link:https://youtu.be/Ors5ErKu524 or on Channel 15 at 9 p.m. Friday, Oct. 21, and 9 a.m. Saturday, Oct. 22.
For more information about the resources available through the ADRC contact Abrahamson at (715)381-4411. For more information about the coalition, contact Pilgrim at the SCVF at (715)386-9490.