Life Interrupted After A Stroke
“There is nothing you can’t accomplish if you just learn to figure it out,” said married father of four John Steyer of a traumatic year of lost employment and stress for his whole family. The experience, he said, “made me bolder; it was the right thing to do.”
In 1995, when John and Lisa Steyer had been married about five years and had a young toddler, Lisa’s 58-year-old mother, LeeAnn Holmes, suffered a severe stroke. It paralyzed her left side and took away much of her personality. Holmes spent 60 days in an acute-care rehabilitation facility, where she received intensive treatments, including overall health care plus occupational and physical therapies (OT and PT).
But after that period, “the next step was basically a nursing home; there wasn’t any great care outside of that,” Steyer said. This was despite Holmes’s insurance through her nearly 30-year career with the U.S. Post Office.
Holmes had raised five children as a single parent; Lisa was the oldest sibling. “So we decided she was going to come live with us,” Steyer said.
New Journeys
His family lived in Lenexa, Kansas; his mother-in-law lived in Lincoln, Nebraska. “I can remember after the first 60 days, we came out of acute care, got her into her car, and drove her to Lenexa. She was not even near being healthy enough for a four-hour ride.”
At home, the Steyers could provide personal care not available in a nursing home, particularly one of 30 years ago. But in addition, bringing Holmes to a new state and city meant she was eligible for another 60 days of much-needed acute care rehab. During that period, John and Lisa were able to set up additional OT and PT therapy so she could begin work as soon as she finished with acute care.
Steyer sold life and health insurance, and Lisa traveled as an accounts-payable auditor for hospitals. But even with their leg up understanding the health insurance system, the experience ahead of them was filled with questions and a lack of resources — and information on how to find them.
Because Lisa traveled for work and John had been self-employed at the time, he gave up his paying work and took on the lion’s share of the day-to-day caregiving — of both his 18-month-old son, Joel, and his mother-in-law. Between driving to various appointments and preparing meals, the latter took most of the day.
“And then just dealing with the emotional aftermath of someone surviving a stroke,” he added. “She had lost all of the self-sufficiency she once had, which is like losing a person. I can remember, she would practice walking down the hallway, and Joel would try to help her pick up her leg.”
Lisa was a tween when her parents divorced, so Holmes had raised her kids alone while also working full time at the Post Office. “She was the first woman in Lincoln to work in the post office, back in 1965,” Steyer said.
So adjusting to being essentially helpless had been particularly tough. “She had to come to terms with the fact that she was no longer the person she had been. That was really difficult for her. In addition to the paralysis on her left side, the stroke also took away a lot of her emotional capacity to deal with things, so being totally dependent on other people for everything was a huge change for her.
“She had to come to terms with the fact that she was no longer the person she had been. That was really difficult for her. In addition to the paralysis on her left side, the stroke also took away a lot of her emotional capacity to deal with things, so being totally dependent on other people for everything was a huge change for her.”
“She lashed out at her daughter, because parents and children know how to get to each other quite quickly,” Steyer said. “But me, as the son-in-law — she could say anything she wanted, but I was still going to do what I needed to do to take care of her.”
The loss was hard on the whole family. “My wife basically lost the mother she’d had, so she and her siblings were dealing with that. Counseling would have been beneficial for everybody.”
Giving Back
Steyer was raised with a strong message that families took care of one another. That upbringing, plus his strong faith, cemented his belief that taking on the caregiving for his mother-in-law was the right choice.
“People thought we were crazy, having her live with us. But we weren’t going to just set her in a home and have her wither away because no one was willing to do what was needed,” he said. “We weren’t going to let her fail just because we were not willing to help. Parents give everything to their children, so this was our opportunity to give back.”
Still, more resources would have helped both the patient and her family.
“Luckily, insurance covered a lot of the therapy,” Steyer said, “but it didn’t replace the lost income that I had for taking care of her. It’s not that I would have changed anything we’d done, because you do what’s necessary, but the financial stress would have been less, which probably would have made the emotional stress a little bit less.”
He also wished that there had been more resources for Holmes. “She could have used intense counseling on adjusting to this new life. Because basically, over the next two years, she had to come to terms on her own — a longer transition than it could have been if someone was helping her along the way.”
Lisa’s sister drove out from Denver to give the couple caregiving breaks. And their parish offered programs such as support groups, which Holmes attended every few weeks. “They gave her an outlet,” Steyer said. “Rather than putting her burdens on her daughter and her family, she was able to share them with other people in the church. So faith was always a great strength.”
After a year, Holmes had recovered enough to walk with a cane and to get around with the help of a wheelchair. She returned to Lincoln, where another daughter lived. Without continued PT and OT, her health steadily declined. She eventually did enter a nursing home, where she stayed until her death.
Communities
Steyer noted that those in positions to bring change aren’t aware of just how much more help is needed in situations like the one his family went through.
He said that those not in health care aren’t aware of the full range of physical and emotional things families have to deal with. “It might not have changed the day-to-day outcomes, but having a group of resources available would have made the process a lot easier,” he said. Knowing how, and who, to ask for things like relief care would have helped. “There’s not really a one-stop shop.”
But beyond better policies, Steyer advised people to take more interest in one another. “Be willing to help others, help them find the resources they need. When you say hello on the street, be aware that people have more challenges than you might see. Treat everyone with the same amount of respect that you would want for yourself.”
He also counselled people to get involved in organizations they had passions for. “Donate. Be open to helping out in ways that your skills can connect.”
Being a Family
“It was a very stressful period of our lives, but I wouldn’t have changed it for the world,” Steyer said.
“My mother was widowed with four children when she met my father. Her father-in-law had had a stroke and was living with her. We kind of knew since we were born that taking care of family was just part of it.”
During his own family’s stressful period, “I remember my mother saying, ‘why in the heck are you doing this?’” Steyer recalled.
“And it’s like, ‘well, you did it, Mom.’”
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