Kathy Cieslak and her husband, Jim, suspected something was wrong after he suffered the first of several falls while working at UPS. When he was diagnosed with progressive supranuclear palsy (PSP) and frontotemporal dementia (FTD) in 2021, they didn’t know where to start, but Kathy did all she could to maintain a sense of normalcy in their lives. Jim was enrolled in physical, occupational and speech therapies, which helped maintain his quality of life, but the progressive mobility and incontinence issues of PSP-FTD were taxing.
“It was a struggle because we couldn’t predict the future. I was working with an elder care lawyer to see if I could get him on Medicaid,” Kathy said. “I was wondering, ‘What are we going to do? How is this going to pan out? Is he going to go into the advanced stages of this disease? Is he going to fall and get hurt?’ I really had to be proactive to figure out what would come next and consider the financial implications.”
Kathy remodeled their home to accommodate Jim, turning their dining room into a bedroom with a new walk-in shower nearby. She took him to daycare from 7:00 in the morning until 3:00pm, where he would then come home for physical therapy. It was not easy, but Kathy showed up every day for Jim, who was always loving and appreciative of her efforts. Kathy then needed to have hip replacement surgery, leaving her in rehab for a month. It became difficult to take care of Jim and herself.
When Joanna Teters, Manager of Support Programs at CurePSP, called Kathy on November 1, 2022, she had goosebumps. She had been awarded a Quality of Life Grant, which she says could not have come at a better time. Utilizing the grant, she was able to hire a professional caregiver to come in from 6:00pm to 10:00pm to fill in a gap after physical therapy. She felt grateful for the time this afforded to her to recharge.
“I had no clue if I was going to get a grant or not,” Kathy said. “But I thought, why not, I’ll just fill out the forms and see what happens and lo and behold, it was the right thing at the right time.”
The isolating nature of the diseases put immense strain on Kathy, and she felt perhaps most grateful for the simple gift of company. The unpredictable issues that were overwhelming to solve by herself became easier with a companion, providing Kathy with the relief of two extra hands and someone who she says felt like family.
“The falls were frustrating for him and frustrating for me, and [the caregiver] helped me through all of that,” Kathy said. “It allowed me to relax a little bit and know that at that least I had someone else here to keep an eye on Jim.”
Jim passed away on April 8, 2023, at age 69, after sharing 45 years of marriage with Kathy. She felt fortunate that they got to travel extensively together before his diagnosis. Jim loved the mountains and fishing, and once in Montana they saw a beautiful halo rainbow around the sun. Kathy cherished the sight that seemingly came out of nowhere. Even after his diagnosis, they attended adaptive golfing and fishing events so Jim could still enjoy some of his favorite activities.
“These diseases can change everything in the blink of an eye. With Jim this came out of nowhere,” Kathy said. “I was so grateful to the Quality of Life Grant program and glad that they’re continuing it this year.”
On the day that Jim passed, Kathy stepped outside to feed the fish at their local fish hatchery. When she looked up at the sun she saw the same halo that she saw with Jim in Montana. She felt a weight lifted off her heart, relieved to know that in the end everything would be okay.