What former Wisconsin Gov. Martin Schreiber understands today about Alzheimer’s disease would have changed his approach in the early years of his wife’s diagnosis.
His wife, Elaine, started showing signs of the disease more than 15 years ago, a period when Schreiber said he had assumed too many things about the disease, including the idea he could handle everything alone.
“I was arrogant,” said Schreiber, who will talk about what he’s learned in Alzheimer’s caregiving at 1 p.m. Wednesday at Madison College’s Portage campus, Room 102, 330 W. Collins St. “I eventually decided that if Alzheimer’s is bad, ignorance of the disease is worse.”
The Aging and Disability Resource Center of Columbia County is sponsoring his speech. Schreiber’s book, “My Two Elaines,” was published last year and chronicles the challenges and missteps in his caregiving, offering practical advice for others.
“Gov. Schreiber has such a positive attitude about caregiving,” said ADRC Director Becky Mulhern, “and I think this event will help others in our community to know they’re not alone.”
Don’t say ‘no’ so much
His title for the book, Schreiber said, alludes to the most important thing he’s learned about the disease. “The first Elaine was the girl I met when I was a freshman in high school. We were 14. That was the girl I fell in love with, immediately — the girl I wanted as the wife and mother of my children.”
Schreiber — Wisconsin’s governor from 1977 to 1979 — described the “first Elaine” as his best friend and top supporter, a person “who never let me feel defeated,” regardless of anything that happened to him in the political arena. Together they had four children, 13 grandchildren and five great-grandchildren. He and his wife are both 79 years old.
“The second Elaine is the same person, but with Alzheimer’s. She’s different,” Schreiber said. “It is so important for caregivers to understand they need to let go of the first person. You can no longer try to live in that world because the other person is not capable of it.”
But Schreiber tried to live in that world, for a time. He said he often would reach for this first Elaine, whenever it seemed possible, and that approach disrupted their quality of life.
“I eventually had to eliminate the word ‘no’ from my vocabulary,” he said, adding that the challenges of the disease made for enough stress without continuously replying to his wife in the negative.
“I know you want a glass of wine at 9 in morning, but do you want it in a small glass or big glass? White wine or red?” Schreiber used as an example of his new approach.
“When you offer alternatives, you get away from confrontations. You cannot argue with this disease. Arguing makes them feel trapped.”
Join their new world
Humor and compassion provide comfort for both the caregiver and the person who has the disease, Schreiber said.
“Humor helps to loosen things up. It helps you join the world of the person who is ill,” he said.
Schreiber, who frequently visits Elaine in her nursing facility, recalled how once he’d told Elaine he would love her “forever and a billion years.” To this she appeared sad, and he asked her what was wrong.
She said, playfully: “I don’t know if I could take you for that long.”
“You can feel from this ugly disease moments of joy, and that reduces the anxiety for everyone involved,” Schreiber said. ”Accepting this new person, even when that person doesn’t know who you are,” is the most important step a caregiver might take.
“You have no more right for them to remember you than somebody from off the street. Some people will say, ‘But it’s so painful,’ and I understand, but the fact of the matter is this is a disease that has made them a different person. Save yourself the repeated agony that comes with the fact your loved one’s brain is broken.”
Resources such as the Alzheimer’s Association, which has a 24/7 helpline, made a big difference for Schreiber, who encourages people to visit alz.org to learn more about the services it provides. Elaine has lived in a nursing facility for about 2½ years, where she receives round-the-clock assistance he now understands he could not provide for her alone.
“We still laugh together,” Schreiber said. “We share smiles. We sing together — any kind of activity that I can interest her in is what we do. That could be as simple as sitting at the window and looking at the trees.”
“What’s important is she knows she’s loved and accepted and taken care of.”
ADRC of Columbia County has active caregiver support groups based in Portage and Columbus, Mulhern said. ADRC offers a free resource library of materials, and it offers classes like “Powerful Tools for Caregivers,” which is about caring for the caregiver.
Contact ADRC at 608-742-9233 for more information.
ADRC works closely with the Alzheimer’s and Dementia Alliance of Wisconsin, another resource for area residents and one that links caregivers to professionals, Mulhern noted. More information about the nonprofit’s services can be found at alzwisc.org.
“The number of people who have Alzheimer’s and dementia is growing at a huge rate,” Mulhern said. About 115,000 Wisconsin residents have Alzheimer’s disease, a number that is expected to grow by 18 percent over the next 25 years, she added.