I have shared bits about my journey as a caregiver and learning self care during this marathon. I think the first year, I operated on adrenaline alone and then I crashed. And then I started to learn how to do this self care thing the way that works for me. I enjoy a cup of coffee with a friend or even just a phone call. I try to get up early and spend a little alone time before the day begins with everyone else. I like going on walks with my family. Those things energize me more than most things typically associated with self care, like pampering or going away overnight.
We traveled to Washington DC to spend a few days learning about Eve’s genetic results. Being on the road and being Eve’s primary caregiver took a toll on my body. DC is said to be the most accessible city in the USA and in many ways it was. We went to museums, the zoo and hospitals with the wheelchair without missing a thing. But, as is the case everywhere, we still did not find accessible bathrooms and the endless lifting off floor and our van finally caused my neck to become painful.
By the time I arrived home, the next morning I couldn’t turn my head. My shoulders were hurting too and then my arms were going numb. I found relief but for three days, I could not take care of Eve’s physical needs. Thankfully others at home did.
Last week, we had an appointment with one of our doctors and talked about the toll on caregivers. I asked not to lift Eve on the scale because of my neck pain and this doctor’s office didn’t have a wheelchair ramp scale that weighs Eve in her chair. We spoke about ways to reduce the lifting and using two people for transfers. It was good to hear from someone else what I had thought about for a while. Lifting a child or an adult repeatedly does cause overuse injuries and stress on our bodies that can be avoided with better technique and equipment.
Today, I am feeling much better. I am more mindful of how I am doing things and I take my time when moving Eve. She is weaker since she was hospitalized in May and I need to take that into account.
This experience was a good reminder to look at the long term and set up supports at home in order to care for Eve’s needs properly. If you are a caregiver, I’d love to hear how you are mindful of the long term effects of caregiving (physical and emotional). What solutions have you found to be helpful at home and in your daily tasks?