After my 5 minute surface clean, I went into the kitchen to get a jump start on dinner. Sporting events were on the schedule and I wanted to have things ready to go when the kids walked in the door. Just as I closed the refrigerator, I turned, startled. My dad was just behind me.
“Hey, Dad. What’s going on? Why are you following me?”
He looked me straight in the eye and said, “You’re the only one I trust.”
I was caught off guard. “What? What do you mean?”
“Kris, there’s been so many changes going on in my life, it’s hard for me to know which end is up and who I can turn to. You’re the only one I trust.”
I got a huge lump in my throat. That was tough to hear. I
had been so focused on getting things done that I didn’t take time to think about how incredibly difficult all of this was for my dad. He had been through numerous surgeries and a stroke. His concerned look and comment forced me to pause. In the midst of raising a family, working, and managing affairs during hospital stays, emergency room visits, and outpatient treatments, I was barely thinking of how Dad was coping and how I could help him and my entire family with all of this. Heck, I was barely coping. I certainly did not want my life or my dad’s life to be consumed solely by household tasks, personal care activities, and doctor visits. No wonder I felt exhausted and overwhelmed and that he felt he didn’t know which end was up. We had all been treading water and not really living.
It’s natural to think, “When everything settles down, we’ll start doing such and such.” But I knew better. Life doesn’t really settle. It’s full of ups and downs and twists and turns. If I didn’t want to become a person with a “would have, should have” attitude, I knew I’d have to be intentional in learning how to incorporate fun and meaningful activities in our daily routine.
Thankfully, the American’s with Disability Act, better known as the ADA, has made it possible for people of all levels of ability to access public places like restaurants, hotels, theaters, grocery stores, retail stores, museums, libraries, parks, and entertainment venues. Before I became a caregiver, I didn’t pay much attention to the location of an accessible entrance or think twice about accessible restrooms or other accommodations that might be available to help people who were living with disabilities or chronic illness.
I started to pay attention to accessibility in public places and used that knowledge to help all of us develop ideas and ways to incorporate Dad in our activities. The kids loved when Dad went with us to any store that had a scooter. They’d get a ride and Dad could see that he added to the enjoyment of their day. Dad actually began to look forward to going out because it wasn’t as big of a hassle as he thought it would be. We had fun planning trips to the show, enjoying our favorite restaurants, and even taking vacations. The more we learned about accessibility, the easier it became to include Dad in our events. In the beginning, this took some effort, though in time it became part of our natural way of thinking. This all carried over to home activities. Instead of just setting Dad up in an easy chair by the TV, we made a point to include him while we were cooking, doing laundry, art projects, or school activities. Sometimes his involvement meant things might take more time, though I realized more time wasn’t necessarily a bad thing. Oftentimes, it gave me permission to slow down which helped overall with managing stress. It also helped me experience precious moments that would have been missed during my hustle to get things done. Learning to develop strategies to ensure hassle-free outings with ways to incorporate life enrichment activities in our daily routine was easier than I thought. With genuine intention and resource knowledge I how to not sweat the small stuff. Most importantly, I was able to teach my kids and dad that we had the power to enjoy and create a meaningful life.
The month of November is recognized across the country as National Family Caregiver Month. As we honor the 43.5 million family members who care for a person with a disability or chronic illness, take time to explore the community and reap the benefits created by the American’s with Disability Act. Help your loved one and your family live life with purpose.
In her former role as Founding Director of the Rehabilitation Institute of Chicago LIFE Center, Kristine Cichowski developed an award-winning education center for families and people faced with physical disabilities and chronic illness. Kristine currently provides education and training to businesses, schools, and community groups on family caregiving, disability inclusion, self-advocacy, and leadership through her company, Power To Be.