The significance of what was happening in March 2020 didn’t really hit me until one evening when one of my caregivers was stretching me out before bed. He read a text aloud that he had gotten from the University of Kansas. “Because of the Covid-19 pandemic, classes will be online for the remainder of the semester. All in-person classes are canceled.”
The panic that was rising within me threatened to escape in the form of a scream. Because I am a wheelchair user affected by cerebral palsy, I utilize the help of a team of caregivers to help me with my day-to-day needs. Most of my caregivers are college students. A shelter in place order meant they were going to go home to be with their families. If I didn’t have enough caregiver coverage…I didn’t want to think about what could potentially happen.
Sure enough, over the next 48 hours, my team of four caregivers dwindled down to one. Matt, the one who hung in there with me, has literally been a godsend in my life since I met him. He had been working for me for almost a year at that point, and he knew every aspect of my routine. Over the next few weeks, Matt did endless loads of laundry, which he also folded and put away. He cooked, cleaned, ran errands, and made my bed with hospital corners, just the way I like it. He even checked in with me every day to see if I was doing okay mentally. If the answer was “no” he reminded me it was okay not to be okay. Then he listened with compassion and concern as I articulated what was going on in my head.
About a month into our new “partnership,” Matt came in for a morning shift. As he was helping me into my wheelchair, he was a little slower than usual and the huge bags under his eyes showed me how exhausted he was, even though he would never say that. When I asked, all he said was that he hadn’t slept very well the night before. Even so, as usual, during that shift, he set out to do everything I needed with his typical smile and good attitude. When the essentials were done, I sent him home early so that he could rest a bit.
After the door closed behind him, I sat in my despair for a few minutes, wondering if it would consume me. The pandemic was affecting me differently than most people I knew. Because my disability prevents me from driving, I am used to staying home often. In fact, it is pretty safe to say that I have been sheltering in place most of my adult life. The “not getting out much” wasn’t new to me. The thing I was struggling with was not having people come in.
The college students I hire as caregivers keep me young. They typically have a somewhat flexible schedule, and they are fun to talk to. They also tend to listen to me when I tell them the way that I want things done. I really like having my caregivers coming in and out of my house; that has proven to be a nice way to break up my day. Additionally, in the days before the pandemic hit, it wasn’t uncommon for people from my church to stop by and say hello. When that happened, I always knew we would have an interesting conversation, and it was easy to ask them to get something I couldn’t reach or move a load of clothes from the washer to the dryer if the need arose.
So, on the day that I sent Matt home to rest, the overwhelm was not only because my house was so empty, but it also stemmed from the fact that I knew my caregiving needs were too much for one person. Given the circumstances in the world around me, there wasn’t an easy fix. Since I can’t stand feeling helpless or out of control, I knew I needed a different mindset.
I looked around my house. There were a few dishes in the sink and a few dirty clothes on the floor of my bedroom. The counters in the kitchen needed to be wiped down and my new puppy needed a walk to tone down his abundance of energy. Looking at everything that needed to be done all at once was too much, but what if I looked at each task that needed to be done individually? Slowly a new thought crept into my head. I wonder what I could do by myself.
Reachers were placed in strategic spots around my house so they were easy to grab if I dropped something. I got the one from my bedroom and picked up my dirty clothes, piling them on my lap. Using the reacher again I went to my laundry basket and dropped the clothes in. Success! Next, I wet a paper towel and went to work on the kitchen counters. I couldn’t reach back far enough to get them totally clean, but what I could do was enough to make a difference.
Over the next few months, Matt and I put our heads together and got creative. Using the pull-out sprayer on the kitchen sink made it much easier for me to do my own dishes, and I bought an over-the-sink dish rack so that I could reach the dishes to put them away once they were dry. A hands-free leash meant that my puppy and I could go for a stroll on the bike trail by our house whenever we wanted. I made simple meals and reorganized my Tupperware so I could reach it to put leftovers in the fridge. With careful balance, I figured out a way to tip the trash and recycling cans forward and use the wheels on the bottom to take them to the curb in my power wheelchair. Eventually, with a whole lot of practice, I even came up with a way to get in and out of bed on my own if I had to.
None of it was easy and there was a whole lot of trial and error in the process. I also had to remind myself it wasn’t essential I finish each task all at once. I started to make a habit of working at something for fifteen minutes at a time. I found if I took a break after that, then I could come back to what I was doing later without being frustrated or giving up on it completely.
Don’t get me wrong; I am not under the delusion I will ever be able to completely care for myself. Matt still comes by on a regular basis to do things for me that I just can’t do on my own. And these days I am at the point where I can finally hire more caregivers. But I am not nearly as dependent on them now as I once was. That is an accomplishment that nobody can ever take away from me.
Who knew that a pandemic would be my pathway to more independence?