On a recent afternoon in a conference room at Lutheran Home in Wauwatosa, former Wisconsin Gov. Martin Schreiber shared with a group of area nursing students his journey as a caretaker of his wife, Elaine, who was diagnosed 16 years ago with Alzheimer’s.
It’s a talk Schreiber estimates he has given more than 400 times over the past three years, but one that he remains passionate about communicating to as many people as possible.
“If Alzheimer’s is bad, ignorance of the disease is worse,” Schreiber said. “Ignorance of the disease causes further pain, anxiety, depression and grieving. If people better understand what this disease does, we can better cope.”
Schreiber’s mission is to cure what he calls “Careheimer’s disease,” the adverse effects that can affect those who serve as caregivers to Alzheimer’s patients if they don’t take care of themselves. Since 2016, he has travelled across Wisconsin and 15 other states to share his message with families, employers and health care providers. He frequently delivers his lecture to future health care workers who are training at local colleges.
Schreiber, who served as governor from 1977-’79, said he views his awareness campaign not as a job, but a passion project.
“It really pains me to know how horrible this disease is and that we as a society really don’t know how to deal with it, to make the lives of people better,” Schreiber said. “I never thought I would be in this position and it’s not anything that I do where I felt an obligation. It’s more of a passion to try to help caregivers learn, cope and survive.”
At each of his stops, Schreiber widely distributes his book, “My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver.” The book recounts the story of meeting Elaine as high school freshmen in the 1950s, their marriage, the early signs of her Alzheimer’s – including when she started getting lost while going to familiar places or forgetting her favorite recipes – and his experience of caring for her.
Schreiber said he learned about the importance of availing oneself of caregiver resources the hard way. It motivated him to write the book for others who are going through similar experiences.
“I thought I didn’t need any help,” he said. “And that’s a mistake that a lot of caregivers make. We think we can do it ourselves and we don't know how to fight this disease and the only way we can fight it is by knowing more about it so we can be in a position to steal those moments of joy.”
Schreiber has sold or donated more than 30,000 copies of the book to caregivers, with net proceeds benefiting caregiver support programs.
In addition, Schreiber collaborated with Wisconsin’s state government and business groups to create the Dementia-Friendly Employers Toolkit, which is designed to help employers support employees who are caring for a loved one with dementia.
Schreiber has also been a major supporter of Lutheran Home, where Elaine lives. He donated the lead gift for its $10 million capital campaign to build a new 45,000-square-foot memory care assisted living community that is connected to the Lutheran Home campus at 7500 W. North Ave.
The new facility will be named “Elaine’s Hope” and will offer supportive programs for caregivers.
“Lutheran Home has been a comfort; it’s a place where I know my loved one will get the very best possible care,” he said. “(Elaine’s Hope) will be a leader in helping caregivers have a chance to live a fuller life by offering caregivers a keener insight into the disease and a better understanding of what a caregiver must do to keep themselves healthy.”