Want to know how caregivers do it?
Routine is key to caregiving.
By Erin Hayes
Caregiver, Wife, Mother
It’s true. Once I got into a routine with the kid and the quad, things became so much easier. I now know exactly what to expect the minute I wake up until the minute I fall asleep. And when my routine is changed, things fall apart. And when things fall apart, I fall apart.
Routine allows me to focus on what is important when I know what I have to get done. It allows me to not worry about the little things in life. It really does make things easier.
On one recent day, we were so far out of our routine that I almost completely lost it. It was the perfect storm of situations (no pun intended since there was a snowstorm that completely messed things up). We lost our babysitter because of prior commitments, which meant we had to find a quick backup. But it also meant we had to skip class. The quad also had no ride home. No ride home meant I had to go get him. Add onto that a snowstorm, and it meant the drive to get him and then home was going to be terrible and take longer than necessary. And my stress level immediately started to rise just knowing what was ahead of me.
The quad and I both work about 30 minutes from home. I work southwest of home. He works south. That puts me about 25 minutes from him on a good day with light traffic and clean roads. Last night, with only a few inches of snow, it took me twice that to get to him and then almost an hour to get home and get the kid. This meant we got home at 7:30. When we got home, we realized that his pee bag had broken. Pee bag breaks so where do you think it goes? Yea…
I felt so bad for him. He feels terrible when these things happen. And they aren’t his fault. They happen. However, it was tough to accept since it meant more work for me, and at that point, it was late and I was STARVING. It was also the second night in a row this had happened, so that was tough to swallow.
I made a quick dinner, and we ate. He helped the kid get ready for bed while I cleaned up the kitchen. While cleaning the kitchen, I found out that the dog had peed in the house. Apparently everyone was having pee-related issues that night.
Once the kid was in bed, I put him to bed, cleaned him up and started the laundry. Then I finished shoveling the driveway. I knew that if I didn’t clean it completely, our personal care assistant (PCA) wouldn’t be able to get up it in the morning. And per policy, if they cannot make it up the driveway safely, they aren’t allowed to come to our house. And I need our PCA to come.
So I shoveled. And cried. Because I knew I still had things to do and I just wanted to catch a break. So I stood outside, in the cold, alone and cried.
But apparently it was what I needed because once I was able to pull myself together (and wipe the frozen tears off my face), I went back inside and finished everything I needed to do and finally went to sleep.
Routine really is everything for me. This day started off just like any other day, and that was just fine with me.
ERIN HAYES has been a caregiver for her husband since December 2007, when he sustained a paralyzing spinal cord injury that caused quadriplegia. She is actively involved as a family caregiver advocate and created a website called “We Rock. They Roll.” for family caregivers. Visit it at www.werocktheyroll.com. She lives in Maine with her husband and their daughter.
Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.