Former governor shares love story, advice for Alzheimer’s caregivers

When a teenage Marty Schreiber first laid eyes on Elaine Thaney in a high school classroom more than seven decades ago he knew immediately that his life and hers would be intertwined. What he could not have known was that there would come a day when she would no longer recognize him as the love of her life, a turn in the road that came about as a result of an Alzheimer’s disease diagnosis that has prompted an advocacy for others who are caring for loved ones experiencing forms of dementia.

“I knew right away that she was the one for me,” Schreiber said of his first meeting with his future wife when they were both high school freshmen. “And so we dated and we went steady, and we got engaged and we got married, had four children and 13 grandchildren and now eight great-grandchildren.”

Their full life together also included a stint in politics as Schreiber served as governor of Wisconsin in the late 1970s.

Then, when Elaine reached her mid-60s, a change became apparent.

Schreiber’s friend, companion, advisor and life partner was getting lost while driving familiar routes and struggling to remember the components of her favorite recipes.

“That was the beginning of the second Elaine,” he said. “The same person but a different Elaine.”

Schreiber’s experience caring for Elaine over the course of nearly two decades prompted him to write a book, published in 2017, entitled “My Two Elaines.”

“I concluded that if Alzheimer’s is bad, ignorance of the disease is worse,” he said. 

When someone is diagnosed with Alzheimer’s,“there are two patients,” Schreiber explained. “There is the person who is ill and also the caregiver.”

In his book and in his speeches, Schreiber discusses the “traumatic, psychological impact of seeing your loved one disappear a little bit every day.”

Because Alzheimer’s is a regressive disease, caregivers must grapple with the reality that their loved one will continue to deteriorate and there’s nothing they can do to stop it from happening.

“If you don’t understand this disease it becomes so much worse,” he said, adding that his goal in sharing his story is to help other caregivers “learn, cope and survive.”

One issue that understandably causes caregivers and family members intense pain is their loved one forgetting their name.

“I try to point out to caregivers and loved ones that hearts can touch without them knowing our names,” Schreiber said. “I know it’s difficult and it hurts when that memory fades but by the same token that’s just such a small part of the fact that hearts can touch by holding a hand or by giving a hug, singing a song together, listening to music, so people should never think that just because their name is not remembered that they are not remembered in the mind.”

To illustrate the point, he shared a story of a lunch he had with Elaine where she started to cry and divulged that she was beginning to love him more than her husband. That incident showed him that the connection that first developed in a high school classroom, and was nurtured over decades of life spent side by side, still endured even though she was no longer able to identify him as her husband.

“Part of being a caregiver is to accept what is,” he noted. “We can moan and maybe revolt but when it comes down to it we have to look at the situation that we’re in and ask ourselves how we can make the best of it.”

One piece of advice: Try to make each visit with your loved as “soul-touching’ as possible.

While Alzheimer’s can’t be cured, caregivers can decide to do everything they can to ensure their loved ones  live the best life possible. This involves “joining their world” and employing “therapeutic fibbing,” Schreiber said.

As an example, he explained that when Elaine would ask him questions about her parents he would tell her that they were doing well rather than repeat over and over again that they were both deceased.

Trying to keep a loved one with dementia “in our world” will only make them miserable, he added.

Schreiber also addressed the issue of caregiver fatigue. He stressed that caregivers cannot help their loved ones if they are not taking proper care of themselves.

“Caregivers have to understand that it’s important to realize that true expression of love is to take care of yourself as a caregiver so you can help your loved one live their best life possible,” he explained.

Caregivers must also remember and remind themselves that they can and should ask for help from others, he added.

“To ask for help means you’re not giving up,” he noted.

One source of help for caregivers in Wisconsin are the local Aging and Disability Resource Centers (ADRCs) located in each county. The Alzheimer’s Association, which hosted a fundraiser at The Pines Event Center in Rhinelander Saturday evening where Schreiber served as the keynote speaker, is another valuable resource.

Now 85, Schreiber said he will continue to share his love story with Elaine, who passed away in 2022, as long as he’s able.

“I was fortunate in a way because I could love two Elaines in completely different ways,” he said. “It was something very special.”

Heather Schaefer may be reached at [email protected].