SIOUX CENTER—There’s no place like home.
Sometimes a person needs some help staying at home, and that’s where Wayne Kobes of Sioux Center found a valuable service in Sioux Center Health’s Hospice and Home Care program.
“Being at home has a healing quality, a sense of peace and comfort that’s unmatched,” said Kobes. “Though healing wasn’t in the cards for Helen, who had ALS, home health care allowed my wife to have the comfort of being in our own home while receiving necessary health care and assistance.”
The home health service and later hospice care both in the home and nursing facility gave Kobes, his wife’s main caretaker, a break — be it an hour or two — to recharge.
Helen Kobes, 70, of Sioux Center, died Jan. 22, 2018, in Sioux Center, after a 19-month struggle with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease.
Of her 44-year teaching career, 37 of those years were as a physical education teacher for Sioux Center Christian School. Wayne Kobes is a former Dordt University theology professor serving as the university’s church relations representative. They had been together 50 years, married 48.5 years, at the time of Helen’s death.
About three years ago, their world turned with the ALS diagnosis.
A semi-definitive second opinion of the diagnosis came in August 2016.
Signs of change
Wayne recalls his wife being a faithful walker, either through the Dordt University prairie or at its recreation center, depending on the weather.
That winter of 2016 she began to feel more tired than she ought to be.
“She went to the doctor and at that time that confirmed that she’s getting older, she’s not as young as she used to be, which is a reality we all have to face sometimes,” Wayne said. “But by the spring when we went to get her some new walking shoes, I notice her right foot was slapping as she walked.”
A chiropractic appointment lead to the recommendation of getting an MRI, which revealed she had a pinched nerve in her back. Then in May 2016, the couple went on a family vacation with their four children and grandchildren to Europe.
“We did a lot of walking, which makes anyone tired but at one point she sat down and asked for help getting up,” Wayne said. “That made us think something else was going on.”
June 22, 2016, Helen had an electromyography, or EMG, which sends electrical impulses through parts of the body to test and read how nerves react. Helen had both her right and left legs tested.
“The results showed that the nerves were pulling back from her muscles and dying — she possibly had ALS,” Wayne said. “We sat in the car in a daze. What else do you do when you’ve been told you have something so rare that you really don’t know much about, only that there’s no cure?”
More follow-up tests at Mayo Clinic in Rochester, MN, couldn’t definitively confirm Helen’s ALS diagnosis but she underwent various other tests for disorders than could mimic ALS, which all came back negative.
Living with ALS
ALS is a disease that causes the death of neurons controlling voluntary muscles. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, people may lose the ability to speak, eat, move and breathe.
The average life expectancy after a diagnosis is three to five years, “but that’s not for certain,” Wayne said. Helen lived about a year and half.
According to the The ALS Association, there are two different types of ALS — sporadic and familial. Sporadic, which is the most common form of the disease in the U.S., accounts for 90-95 percent of all cases. It may affect anyone, anywhere. Familial ALS accounts for 5-10 percent of all cases in the U.S. Familial ALS means the disease is inherited.
Helen’s was sporadic.
“It’s a nice way of saying doctors have no clue how a person gets it,” Wayne said. “We learned different things like ALS hits men more than women, affects athletes and those who exercise more than couch potatoes and it can hit at any age. And the progression is different for different people.”
Legs, arms, the body’s core and neck are the four areas largely affected by ALS.
“It started in Helen’s right ankle, the farthest from her neck and head, which gave us time,” Wayne said, noting he continued to teach at Dordt that 2016-17 school year. “It wasn’t too long after the diagnosis that she needed a walker and the progression continued from there.”
By the spring of 2017, Helen carried a cellphone in a pouch around her neck in case of a fall because she couldn’t get up on her own, which happened twice and took Wayne away from his university work both times. She was in a wheelchair for Wayne’s retirement from Dordt. The couple’s last outing was to California in June 2017.
“ALS progresses differently for different people but each month you could sense something was harder,” Wayne said. “That summer got more intense.”
By September 2017, Helen needed a hospital bed.
“She could still use her arms but not her legs,” Wayne said. “Each person flips and flops while they sleep, but she couldn’t, so eight times a night I’d get up to help her reposition. She said I couldn’t keep it up,” Wayne said. “Through it all, she was worried about me.”
Wayne found much needed help in providing for his wife through Sioux Center Health’s Home Health service, which came over to their home twice a week.
“It gave me a break so I could just go out,” Wayne said. “At first it was just to get prescriptions, go grab a cup of coffee, talk with my brother. But then kids and people from church stepped in too. Besides having help with bathing and personal care, for Helen it was another person to socialize with. These aids became her friends. It was great for her to have more than just me to interact with.”
Connecting with Home Health also helped the couple head their specialist’s advice.
Dr. Karen Garnaas, a neurologist with Avera Medical Group in Sioux Falls, SD, was “a women of faith,” Wayne said. “She gave us the best advice, that Jesus promises to walk with you. Don’t get ahead of him. Don’t worry about what might be or what might not be. Having home health allowed us to take a day and week at a time, and if we had questions we had a contact to go to.”
They also knew they’d have help if an emergency situation arose, which occurred mid January 2018 when she ended up in the emergency room due to pneumonia.
“It helped us be proactive,” Wayne said. “Getting involved in these services helped us feel like we had our ducks in a row already. In that emergency case, what if we hadn’t? It was a comfort to know I didn’t have to do every piece of care on my own.”
Self care importance
Helen had a feeding tube inserted in Dec. 5, 2017, which also began the start of the couple switching to hospice care.
“We had all the contacts in place, lots of paperwork in order that I didn’t feel bogged down with that at the hospital, I could just be with my wife then,” Wayne said.
Helen ended up moving to the nursing home for about a week while also staying on hospice care.
“We did that to give her a little extra care, fill her day with some familiar faces,” Wayne said. “Helen was concerned about me until the end. Choosing to have home health and hospice, she agreed, was a way to support both of us. I wasn’t sick a day between Helen’s diagnosis and her death, praise the Lord, but I did need rest. We have to have some self care to be able to take care of the ones we love. That’s what home health and hospice services helped me do.”
Wayne also had closure, knowing he did all he could for his wife.
“And I wasn’t alone,” he said. “Those days after losing a loved one are especially hard, even now they’re hard, but we cared for her the best we could on this earth and now she’s whole again with the Lord.”