Helping Students See the “Invisible Patient”: Family Caregivers

“If Alzheimer’s is bad, ignorance of the disease is worse,” says family caregiver and former Wisconsin Governor Martin Schreiber.

Since his wife Elaine was diagnosed with early-onset Alzheimer’s 14 years ago, Schreiber has struggled with his own ignorance.

“There were moments of joy I passed up because I didn’t know about the disease. The world of the person who is ill becomes smaller and smaller. The person does not care what happened five minutes, five years or fifty years ago. What I had to understand was to enter the world of this new Elaine. She didn’t have to know who I was for us to have some moments of joy.”

Former Governor Martin Schreiber and School of Nursing DNP student Stephanie Reopelle

Schreiber has similar advice for healthcare professionals, which he shared with students during a recent event at the University of Wisconsin–Madison School of Nursing.

Those in healthcare and allied fields “can also join the world of the person who is ill,” he says. “It will make your job easier.”

Another important lesson for healthcare professionals is that a dementia diagnosis involves two patients: the person who is ill and their family caregiver.

“Help the caregiver understand that they can’t do it alone,” urges Schreiber.

“When the caregiver is male, chances are they never ask for help,” he says. “They think they can do it all by themselves and because of that they don’t realize what is happening to them on this journey.”

Schreiber struggles with what he calls his “machoism” and go-it-alone approach. He felt frustrated when he couldn’t “fix” everything for Elaine.

“I can give all the love, attention and energy that I can muster,” he says, but then “I wake up the next morning and the disease is worse.”

The increasing demands of caregiving led to a serious health crisis of his own.

“Why did it take me so long to understand what was going on?” wonders Schreiber. “When my health started going downhill, why did medical professionals not ask what was going on in my life that would cause an ordinarily healthy guy to become so short of breath and irrationally irritable, among other things?”

Schreiber encouraged the nursing, pharmacy, social work, psychology and other students at the UW–Madison event to take a more holistic approach to patients and their families. He urges healthcare and allied professionals to ask questions and watch for signs that family caregivers need help.

It was Schreiber’s children who staged an “intervention,” insisting that he get support. He then connected with the local Alzheimer’s Association, joined a support group with other dementia caregivers and received individual counseling.

The counseling helped Schreiber deal with his feelings of guilt and failure.

“Why is the guilt there?” he asks. Because “you begin to lose your patience” as caregiving becomes emotionally, mentally and physically overwhelming. But you fault yourself, thinking “you’re the only one who gets angry.”

To help other caregivers avoid burning out, Schreiber worked with the Alzheimer’s Association to launch Operation: Stronger Together. It’s an awareness program that connects families to education and other resources that support successful caregiving.

He’s also written an acclaimed book, My Two Elaines: Learning, Coping and Surviving as an Alzheimer’s Caregiver, which raises funds to promote Alzheimer’s caregiver support.

Students left the UW–Madison event with a powerful caregiver perspective and copies of My Two Elaines.

The Center for Aging Research and Education (CARE) organized the Schreiber event because “more family members are helping aging loved ones manage complex health conditions,” says UW–Madison School of Nursing Associate Dean and CARE Executive Director Barb Bowers.

“We need to prepare students to work with family and other caregivers to help older adults live their very best lives.”

Peggy Rynearson