thirdAGE Health Close-Up: Alzheimer’s Caregiving is a “Living Bereavement”

By Sherry Amatenstein LCSW

Having your spouse develop Alzheimer’s is a tragedy for anyone, but for Janice Kiecolt-Glaser, Ronald Glaser’s illness is laced with heartbreaking irony.

In the early 1990s the couple published a landmark study proving that the caregiving of those suffering with dementia or Alzheimer’s disease experience stress that dramatically impacts their own health.

Recalls Janice, 65, a psychologist and the Director of the Ohio State Institute for Behavioral Medicine Research of the pair’s first meeting in 1978: “I literally noticed this attractive man from across a crowded picnic table at a gathering for faculty at Ohio State. Ron was a new Department Chair, and 12 years older than me. I was an Assistant Professor in the Psychiatry department.”

He noticed her back, inviting Janice to lunch in the hospital cafeteria. The pair quickly bonded. Marrying in 1980, their collaboration proved personal and professional. Their research study on caregiving, initiated in 1988 (sparked by a lecture they’d attended on the effect of stress on the immune system), mushroomed into a 20-year study. Janice says, “It was meant as a model of chronic long term stress. For caregivers, it’s a double hit when the person closest to you becomes sick.”

For a long time the couple’s life together was, if not stress-free, full of commonality and adventure. Janice says, “I was the authority in terms of behavior; Ron on the immune system. It was a great partnership with discrete areas of expertise. We got invited to talk about our ongoing research in many interesting places – throughout the United States as well as England, New Zealand, Australia, Germany…”

When at home, the two seldom ran out of conversation. Working at the same College of Medicine, they shared gossip and goals. “As Department Chair, if Ron had difficulty with so and so, I knew who he meant. And when I worried about tenure Ron knew exactly what the requirements were and could help.”

Their partnership extended well beyond business. “I got him into jogging, we’d sit and read, dine out, and watch movies and TV together. Ron was into visual stuff – action and romance. Neither of us liked horror.”

In addition to their research on caregiver stress, the pair conducted studies on – well – marriage. “We researched the differences in stress hormones when couples have contentious fights,” Janice explains. Participants would fill out questionnaires examining areas of disagreement such as in-laws, then the researchers would step behind a curtain and watch their subjects have a conversation on the issue. Being angry or hostile toward one’s partner did affect immune functioning.

Couples participating in the study were provided with mental health resources to help them going forward. And yes, Janice and Ron picked up tips on navigating their own relationship. She says, “We became even more conscious of pulling punches during our differences of opinion. You can be angry but you shouldn’t denigrate your spouse.”

Still, the work for which the couple was most renowned was their years of research on caregiver stress. Thus Janice knew exactly what she was in for when, in 2011, Ron began experiencing mild cognitive impairment. “I believed we were on a bad road because Ron’s mother had Alzheimer’s.”

In 2014 Ron quickly lost cognitive functioning. Janice says, “We started getting legal papers together such as trusts, but didn’t share what was going on with many people.”

Until it became impossible to hide. Suddenly the speech of the man who was never at loss for words became garbled, and he needed help to do daily tasks such as shaving or finding his way around the house. “He’d say, ‘I need to go to the bathroom’ and then head to a room that wasn’t the bathroom.”

A major heart-rending adjustment for his wife was succeeding her husband as Director of the Institute. Janice says, “I had a really, really rough time taking over Ron’s responsibilities at work.”

Perhaps equally traumatic was the realization that it was no longer safe for Ron to be at home. Once he tried to sit on a space heater; another time while under the watchful eye of a caregiver, he couldn’t figure out how to get out of the bathroom. Ron is now living in a memory care unit in a nearby nursing home.

Alas, Janice experiences firsthand the stress that the couple’s life’s work had documented is endured by caregivers. “I visit him almost every day after work and during the weekends. Sometimes he knows who I am; sometimes he thinks I’m the nice women who brings him candy.”

At least her studies provided a roadmap for dealing with the stress: getting enough sleep, exercising, eating healthfully, and having nurturing friendships.

Still. “Life feels kind of odd. I’m married but he’s not there physically or emotionally.” The description this vibrant and brilliant woman coined for her present life is exactly right: “a living bereavement.”

Image credit: Ronald Glaser and Janice Kiecolt-Glaser in the laboratory, courtesy of The Ohio State University Wexner Medical Center.

Sherry Amatenstein, LCSW is a NYC-based therapist, speaker and author of four books, including How Does That Make You Feel?: Confessions from Both Sides of the Therapy Couch and The Complete Marriage Counselor: Relationship-Saving Advice from America’s Top 50-Plus Couples Therapists. Her website is www.marriedfaq.com.