Pandemic brings added struggles to caring for terminally ill family member

Jan Herwaldt: 'It was like going back to square one when dealing with the illness'

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SUGAR GROVE – Living through a pandemic is hard on everyone. But for those caring for a seriously ill family member, COVID-19 has made daily life even more of a challenge.

Jan Herwaldt of Sugar Grove has been the primary caregiver for her husband, Mark, who was diagnosed with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, in January 2017 at age 54.

According to the ALS Association, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The patient’s mental capacity is not affected. There is no cure and the disease is always fatal. The average life expectancy after diagnosis is three to five years, although some patients can live much longer.

Mark Herwaldt cannot move his arms and legs, and he cannot eat or speak. He relies on a machine to help him breathe. He communicates through a special computer that can detect eye movement, Jan Herwaldt said.

“When COVID happened, it was like going back to square one when dealing with illness,” she said. “You get to a point where life has gotten more predictable, but now life is back to threatened every day.”

The couple has five children between the ages of 20 and 32. Herwaldt said their son had been helping her care for Mark, but when COVID-19 hit, he wasn’t able to help as much because he is an essential worker and could be exposed to the virus while at work and bring it home.

“Now [my son] wears a mask in the house, and he does not help with care. He tries to keep his distance from all of us,” Herwaldt said. “One daughter was working in fast food, but she had to quit because of the danger of bringing [COVID-19] home. This virus is tough on everybody, but [our children] have to be more isolated, which is hard for their age group.”

In addition to losing help from their children, the nurses and cleaning service that often would visit the home before COVID-19 have been coming around much less frequently. Herwaldt said the weekly visits from a nurse have gone down to biweekly, while the certified nursing assistant who helps Herwaldt bathe her husband comes once a week instead of twice a week.

A social worker and a nurse from the Les Turner ALS Foundation also used to visit every few months, but those visits now are relegated to online check-ins.

“It’s just not the same. It was always really nice and comforting to have them come,” Herwaldt said of the social worker and nurse. “I have half the help, probably less than half now. I have friends who are nurses who would come to the house and be a respite, so I could go out for dinner, go for a walk. But I couldn’t have them come anymore.”

Along with fewer visits from health care providers, the Herwaldts aren’t able to see friends and family.

“[COVID-19] makes this harder physically, emotionally and spiritually,” Herwaldt said. “Mark went to church every week, but we had to immediately stop doing that. He had at least three visitors a week, which is extremely important, but we had to stop all of that. Even outdoor visits, we have to limit to just a few people. It’s a huge change to not have visitors or to see people in person. We do video chat, and he can use social media. People call and do things that are helpful, but it’s not the same.”

The Herwaldts have been spending their days listening to audio books and podcasts, reading and watching television. One thing that Herwaldt said she and her husband have been contemplating is the meaning of suffering. She said that as a society, Americans don’t often accept that there is suffering in the world.

“Before modern medicine, people expected to suffer more and expected to be a caregiver,” she said. “We watch and read stories of people who have gone through horrible things and have gotten through it, which makes you feel that you’re not alone. It’s encouraging and not sad. These things are happening, and we have resilience to deal with it and get through it. We have to accept that suffering is a part of life. Everybody suffers to a certain degree. We believe there is a time after this time where there is no suffering, there is no grief. Our faith helps get us through this.”

Herwaldt described a wide range of emotions that she has felt during her husband’s illness, and especially during the pandemic. One thing that has helped her get through this is knowing what she can change and what she cannot, Herwaldt said.

“It helps with frustration and anger to know there are things I can’t control and things I can. And I have to stick with what I can,” she said. “When something like this happens, you see everything so differently. There’s a big change in the way you view the world when you think that this could be the last of something.”