“If there’s anything worse than Alzheimer’s, it’s ignorance of the disease.” — Martin Schreiber
Former Wisconsin Governor Martin J. Schreiber used a politician’s wit to set the crowd of 150 or so at ease Thursday night at the Franklin Public Library.
“Hey, this crowd is bigger than both the inaugurations of Trump and Obama,” he deadpanned.
You could almost hear the imaginary drummer hitting a rim shot on that one-liner which got howls of laughter.
Schreiber infused his hour-long talk with a great deal of humor, because he felt it was better than standing at the podium and crying.
He was there with co-author Cathy Breitenbucher discussing their book “My Two Elaines” which is about Schreiber serving as caregiver for his wife, the love of his life, Elaine, who was diagnosed with memory-stripping Alzheimer’s Disease 13 years ago.
Schreiber and Breitenbucher are on a whirlwind state tour that will include 70 more stops this year promoting more research into the disease and more aid and understanding for the caregivers of the five million and growing number of people who suffer from this dread illness in America.
Thursday night’s event was sponsored by the Franklin Health Department. The Franklin Public Library is also part of a rotating series of libraries that serve as “Memory Cafes” that provide fun and assistance to patients and caregivers. Franklin will host such events again on Nov. 21 and Dec. 19.
The title of Schreiber’s book refers to the simple fact that the “first” Elaine he has loved and been married to for 56 years no longer exists and that he has learned to adapt to and love the “second” Elaine, the person she is now.
“My first Elaine was my friend, my counselor, my everything,” he said. “My second Elaine is the same thing, only with Alzheimer’s.”
Schreiber makes no bones about using his political fame to help promote this cause. He was governor of Wisconsin from 1977-79 (“There’s no one here old enough here to have voted for me,” he quipped to the crowd liberally sprinkled with white hair and thick glasses) and went on to become a successful lobbyist.
What he’s lobbying most for these days is more understanding and help for people in his position and their loved ones.
It’s a disease spoken about in hushed tones and with quiet, sad voices. not something a gift of “chicken casserole,” as Schreiber puts it, will help.
He explained the disease this way.
A normal person looking at the world through to the wide end of a funnel sees the world and the big blue sky, but that an Alzheimer’s patient’s world diminishes in such degree that in the end all they see is a tiny sliver of the world through the narrow end of the cone.
They often don’t know the names of their children or their spouses or what happened just five minutes ago.
This has happened to Schreiber, whom Elaine often asks “How did we meet?”
The answer was in freshman year Latin class.
So he has tried to adapt. If she says she is still cold after putting on five coats, he will get her a sixth. If she wakes up and says there are imaginary bugs all over her arms, he tries to swat them off for her at the assisted living center she now resides in.
“I no longer expect anything from my first Elaine, so I’ve tried entering the world she’s living in now,” he said. “I’m still learning. …(because) I can’t expect her to remember me anymore than you can expect a person with a broken leg to win a marathon.”
You have to let go of the “first” person you knew and loved for decades so you can begin to understand the “second” person as they are now, Schreiber emphasized.
“I should have let go of First Elaine sooner, so I could love my Second Elaine where she is now,” he wrote in one of the frequent “What I wish I’d done” notes that he liberally sprinkles the book with.
He then told the story of a panicked daughter of an Alzheimer’s suffering father, who came home to find her father throwing cast after cast into an imaginary lake in the middle of the living room “fishing for walleye,” he said.
The daughter calmed down and started fishing alongside her father.
“She said it was some of the best moments she’d had with him in years,” Schreiber said.
Not every moment is this heart-warming, he noted, pointing out the fear that every caregiver has of a loved one wandering off or of making the painful decision of admitting that you just can’t do it alone and that you have to seek professional caregiving help for your spouse or parent.
“There is always a significant amount of guilt,” he said. “The real answer though, is that you did your absolute best. You are a hero and an angel. You need to find a way to get rid of your guilt.”
He himself still goes to Alzheimer’s Association sponsored counseling and encourages everyone who is in his position to seek it out. Alz.org has a specially dedicated caregiver’s center on its website.
Schreiber said the care Elaine is getting is good.
The couple also make sure to do the things that doctors and the association recommend patients and caregivers need to do to help themselves cope. That includes getting the right drugs for the patient; socializing and getting out to into the real world as much as is practical; walking, especially on nice days; and having a glass of wine each night.
Schreiber also is a big believer in the three “P’s”: patience, persistence and prayer.
He emphasized that everyone’s story is different and that everyone handles this issue differently. Detailed journals that Elaine kept for as long as she could, tracked the progress of her disease and gave Schreiber great insight as to how she perceived things.
There is still no cure for Alzheimer’s and one of the keys for a caregiver Schreiber was told was “Don’t press pause on your own life.”
Schreiber isn’t going to, as long as Elaine is part of his world.
“She doesn’t really have to know that I’m her husband,” he said. “If we can still hold hands and go on walks, that’s enough.”
*All proceeds from the book go towards Alzheimer’s caregiver support groups and resources include the following:
*The Alzheimer’s Association of Southeastern Wisconsin, 620 S. 76th St. #160, Milwaukee, 414-479-8800.