When former Wisconsin Governor, Marty Schreiber’s, wife Elaine was diagnosed with Alzheimer’s disease, it changed their lives forever.
Learn how Schreiber adapted to his caregiving role and read our tips for adjusting to caring for a spouse or wife with Alzheimer’s.
A Husband’s Role Reverses
On a winter vacation six years ago, former Wisconsin Governor Marty Schreiber rummaged frantically through his and his wife Elaine’s West Palm Beach, Florida, condo, trying to locate $1,000 in missing cash. He’d placed the funds in a jar in the bedroom. Now the container stood empty.
Had Elaine, who was diagnosed with Alzheimer’s five years earlier, flushed the money down the toilet? Handed it to a stranger? Schreiber had no idea. Four days later, he discovered the wad of bills stuffed in a dresser drawer. Elaine, who’d always managed the household finances, was only trying to keep that money safe. She just couldn’t remember why.
Elaine had always taken care of her children, husband and home. Now she was the one who needed caregiving. Schreiber was a business owner and seasoned politician. However, being Elaine’s full-time caregiver was by far the toughest job he’d tackled yet.
Male Caregivers Take on a Non-Traditional Role
A greater number of women (69%) take on a caregiving role for a spouse with Alzheimer’s, but 33% of caregivers providing 21-60 hours of care per week are men, according to a 2017 report from the Alzheimer’s Association.
Family members sometimes dismiss a dad or husband from the task of caregiving for his wife because they assume he isn’t up to it, says Leslie Eckford, co-owner of Mindful Aging, eldercare consultant and co-author of “Aging with Care: Your Guide to Hiring and Managing Caregivers at Home.” However, more men are stepping up to caregiving for a spouse as attitudes toward gender and marital roles shift.
“When the wife’s health issues are physical… many husbands take pride in managing that,” says Eckford. “When dementia is involved, it gets a little trickier. For some men, the initial phase of accepting his wife’s decline can be difficult and take time.”
Schreiber’s acceptance happened little by little, with each loss of his wife’s memory and personality traits, until the Elaine he knew barely resembled the woman he’d married more than fifty years earlier.
“I found myself in a strange, new role, doing work I never thought I’d be doing,” says Schreiber. “The Elaine I’d known was gone, and to care of her, it was her world I now had to join.”
The “Two Elaines”
Schreiber, the author of “My Two Elaines: Learning, Coping and Surviving as an Alzheimer’s Caregiver,” met Elaine in high school in 1953. After the couple married, she worked as a secretary to put Schreiber through law school. Later, Elaine campaigned door-to-door, with their two-year-old daughter in tow, for Schreiber’s election to the Wisconsin State Senate.
While Schreiber was Governor of Wisconsin, Elaine cleaned, cooked and raised the couple’s four children and hosted dinner parties as first lady. After his political career ended, she returned to work as a pre-school teacher to at-risk children. The couple sailed frequently on Lake Michigan and later bought a 46-foot cruising trawler, embarking on a 5,000-mile voyage with friends through America’s rivers and other waterways.
Around 2005, at age 66, Elaine began to grow forgetful. Often, the former teacher couldn’t remember an article or book she’d just read. Once, at the doctor’s office, she couldn’t recall her birth date. Finally, in 2007, a doctor diagnosed Elaine with Alzheimer’s.
Elaine checked out every book on the disease from the library, going over any information that she hoped might slow the disease. She feared the road ahead, especially for Schreiber, who would be forced to witness her decline. Would he abandon her? Elaine wondered.
“When I get to be a burden,” she’d say, “You can put me away,” Schreiber writes in his book. Many nights, the couple cried themselves to sleep.
As Elaine’s disease worsened, she could no longer manage the household finances, memory loss prompting her to order a lifetime’s worth of new checks. At the same time, her personality slipped away, a stranger’s sometimes taking its place. One day, she accused Schreiber of hiding her $8 monthly teaching pension check. Another time, she forgot they had a daughter named Kathy and insinuated that he was having an affair when he spoke to their daughter on the phone.
Meanwhile, Schreiber had to school himself on his new role as both Elaine’s caregiver and household manager.
“I didn’t even know how to turn on the vacuum cleaner,” says Schreiber. “All the caring, love and tradition of the housewife helping the husband becomes reversed. Along with adjusting to the disease, I had to adjust to this new lifestyle.”
Stepping Into an Unfamiliar Role, Caring for a Wife With Alzheimer’s
Asking for support often doesn’t come easily for men from Schreiber’s generation. “Admitting that you need help can be harder for some men than it is for women, who are more used to pitching in with home issues,” says Eckford. “The wife may have always been a good director of her own care, but Alzheimer’s takes that self-direction away.”
It helps some men, especially if they’re retired, to view their caregiving role as a new job. “That way, they can identify the tasks that need to be gone and get to work,” says Eckford.
Other suggestions to adapt to the caregiving role reversal include:
- Accept help. “When people offer to help, learn to say, yes and thank you,” says Eckford. Allow a friend, relative or volunteer or relative sit with your wife while you take a break and get away.
- Allow yourself time to learn new skills. “The learning curve can be tough,” says Eckford. If you were in the military, normalize household chores like cooking and grocery shopping by realizing that many are not that different from tasks performed while in the service.
- Let go of unrealistic expectations. “You have to realize that the person who once was is no more,” says Schreiber, who continued to travel with Elaine for a while after her diagnosis. On one trip, she left their room and ended up in a hotel lobby in her nightgown. On a 2015 boating excursion, Elaine climbed over him in bed to wander into their friends’ sleeping quarters. “You have to understand how small the world of a person with Alzheimer’s becomes,” says Schreiber. “If you try to take the person out of that world, it upsets them.”
- Seek support. Sources include in-home care agencies, family members, hospital social workers and support groups. “For support, start with the healthcare team. Ask for some temporary home health services to assess the actual home and care situation and set up a plan of care with the husband caregiver,” says Eckford.
After the boat incident, Schreiber realized that he could no longer care for Elaine alone. He and his children toured several memory care communities, eventually choosing one near Schreiber in Milwaukee. For a year after Elaine moved, he slept on the sofa, unable to face their empty bed.
Schreiber still visits Elaine nearly every day, taking her on car rides, out to dinner and walking in a nearby shopping mall. In her late-stage Alzheimer’s, Elaine has no awareness that she’s lost her independence and memories. She seems happy to live in the moment.
“We are both in a better place,” writes Schreiber in “My Two Elaines.” “I now get a better night’s sleep. I get my exercise. I have a better chance of being healthy, and I no longer worry about Elaine. Because she no longer is anxious, neither am I.”
Are you caring for a spouse with Alzheimer’s? How has your role reversed while caregiving? We’d like to hear your stories in the comments below.