Living with ALS: The Caregiver's Burdens

Rich Kern focuses on helping his wife, not railing against the unfairness of her devastating illness.

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This is the sixth installment in a series about Hollister Lindley , a 62-year-old resident of Richmond, Va., and how she is changing the way she lives after being diagnosed with amyotrophic lateral sclerosis, a fatal condition also known as Lou Gehrig's disease. Read "Living with ALS" part one "One Day at a Time," part two "Money Issues Need Care as Well," part three "Medical Gains Can't Come Fast Enough," part four "Learning to Live with Limits" and part five "Seeking Independence and Identity." See Lindley's "Life in Pictures."

Hollister Lindley and Rich Kern
Hollister Lindley and Rich Kern

RICHMOND, Va. – Rich Kern met Hollister Lindley in December 2007 through Match.com. "We just clicked," he says of their first encounter, "and it just took off from there."

Hollister, extroverted with many social connections and a love for food and restaurants (she wrote reviews for a local magazine), paired well with the more reserved Rich. She fell in love with an enormous house that needed loads of work, but they bought it and she dove into the project. Rich, who's also 62, went with the flow, which also seems to be how he copes with her illness.

Less than a year after their first meeting, Hollister began dropping chopsticks during a West Coast trip – a noteworthy mishap for someone who grew up in Hawaii and had more experience with chopsticks than silverware. This was her first symptom in what would become a three-year medical odyssey leading to her diagnosis of amyotrophic lateral sclerosis in fall 2011. This period included multiple surgeries for nerve and spinal ailments. After the procedures, "she'd always get a little better," Kern recalls during a recent interview at his office where he works as an insurance underwriter. "Then she'd get worse again."

Hollister, 6 feet tall, was a competitive swimmer and equestrian. Having always been active, Rich says it's been hard to watch her decline physically. The couple married in April 2010 (it was Hollister's third marriage and second for Rich, who has four children ranging in ages from 24 to 32) and, without having a formal diagnosis, began making plans for a very different kind of life together than the one they expected after meeting in 2007.

Hollister has a slowly progressive form of the disease. Nearly two years after her formal diagnosis, she uses a motorized wheelchair to get around most of the time. And while she has a specially equipped van she can drive, she needs another person to help her get into the vehicle, so it's not heavily used. Rich says breathing is becoming harder for her as her lung muscles atrophy from the disease, and points out that her next medical evaluation will occur in the fall, but says it's clear she's suffered substantial respiratory decline in recent weeks.

"Hollister and I have always had very open and blunt conversations," Rich explains. "You have to have open conversations. You can't worry about hurting each other's feelings." Kern and Hollister are both planners and already have dealt with estate matters, funeral plans and end-of-life medical directives (Hollister wants no machine-assisted respirator or other devices to extend her life).

"We have been focusing on this for four years," he says, "and actually started planning a little bit ahead of the formal diagnosis." In the fall of 2010, for example, the couple moved into a new house that was chosen largely because the ground floor could accommodate their living needs.

As Hollister's ability to do daily tasks is limited, Rich has stepped up. Friends and relatives visit regularly, but he is his wife's primary caregiver. At some point, Hollister will require professional care at home so Kern can continue working.

Hollister is strong-willed and independent so Kern is careful to respect her wishes as her physical skills decline. But it's not easy. "I've been there, slowly and quietly taking more off of her," he says, including domestic chores and a "bunch of duties at night."

Each day may bring a new task that Hollister no longer can do, but Rich is prepared for whatever lays ahead. "I learned how to deal with stress a long, long time ago," he says, explaining he's dealt with health issues of his parents and other relatives. "I've just had a lot of practice dealing with things."

Still, he says, "people have to have some mechanisms for dealing with that stress." Rich handles it by regularly going out into his yard and whacking away at bushes and undergrowth.

Rich does not purport to be a caregiving expert, but he's learning each day as Hollister faces an uncertain countdown to an unfortunately certain and premature death. "The doctors can't tell you how close you are to the end," he says. While that makes it hard to plan, it magnifies the value of trying to live each day in the moment and treasure each day of life.

As Rich says, it's important for him to respect Hollister's wishes about how she wants to live her life as her condition worsens. "You need to put yourself in [her] position," he says.

Patience also has become an essential part of Rich's days. On one hand, Hollister's ALS illustrates that "life is unfair," he notes. "We're losing years that we would have had together."

On the other hand, his job today is to help the couple make the most of their time left. Getting angry or frustrated doesn't add to their quality of life. "As much as people would like to get mad about something, you just don't do it," he says.

After Hollister's ALS diagnosis in 2011, Rich says they went through a "pity party" that included taking a trip to France. Now, Hollister's bucket list has shrunk, and Rich says he really has no bucket list. Hollister would like to see Hawaii again before she dies, but Kern isn't sure the trip would be possible. "I will probably do something like that after she passes," he said, his voice trailing off.