and Care Coach Maura Horton
Being a caregiver changed my personality in so many ways—some subtle and some bold. My attention to detail and attentiveness to my loved one increased, slowly shifting my ability to be spontaneous and carefree at times. I miss that person still. Caregiving also heightened my empathy, and it increased my compassion and courage by fully charging an inner light within me to assist me in standing up and being tough. That piece began to sharpen like a blade. The stronger I got, the stronger I needed to be. It was a continuous loop that I required to not fray or break—an eternal return. Many describe caregiving as being in an untimed fight without the 60-second intervals between rounds, and I felt like I was in training.
“There are no pleasures in a fight, but some of my fights have been a pleasure to win.”
Why is it that caregivers often feel like they have to fight for everything? They often feel as if they are in a silent battle with doctors to attend to their lists of concerns, for insurance companies to cover their expenses. Sometimes it’s a fight for other family members to assist in supporting them. At times, we even struggle with the loved ones we are taking care of by asking them to take medications on time or drinking more water. We beat to our silent fight song, fighting for basic life principles. Isn’t it enough that the one we are helping is already in a war room with a disease or ailment? Why, then, are we too often putting our boxing gloves on as well?
My husband once took a new medication where the side effects were quite harmful, and there didn’t seem to be added value. He was starting to have other symptoms creep up and was not getting any relief. Simply stated, he felt horrible. He wanted so desperately to switch back and questioned the need for shifting to this new regimen. The new, “better” drug wasn’t actually any better for him. He left a voicemail wanting to speak to the doctor, thinking they had a one-on-one relationship and he would surely phone him right back. I saw the pain he felt in how he physically felt. It was hard to watch. He was too nervous to stop cold turkey because he needed some level of medication to function... so he trudged on. All the while, he was still waiting for the doctor to return his call. This is when I took over and started the phone train with the doctor’s office, leaving messages for the doctor day and night. I called so much that I stopped counting the number of phone calls and messages I left. I wasn’t looking for much time with the doctor, and I didn’t believe it was an unreasonable request.
I needed the sleepless nights and the tight muscles in my husband’s body to stop. I needed him to feel in control. I needed him to feel as though his physician was acknowledging him. I wanted him to know we, his collaborative care team, valued his voice. We wanted a five-minute chat that included a quick assessment and options. Getting past the front receptionist to get to the doctor or nurse was excruciating. Her recommendation was to wait for our next follow-up appointment, which was in three months, and we could discuss it with the doctor then. To me, that was unacceptable. Finally, after seven days, that felt more like 70 days... we got a callback! You would have thought I was getting an audition callback to star in a new Mission Impossible film with Tom Cruise. We felt a tremendous sense of relief. We could finally discuss our options and agree on a solution. I felt like a prizefighter winning a championship belt. It may have seemed like a small win, but that win provided insight and the courage I needed to make sure we didn’t ever stay pinned on the ropes.
“You may have to fight a battle more than once to win it.”
It often feels like nothing is easy. Not managing to enjoy the quiet times, because even in the silence, it feels as though a rolling ball gaining speed and girth can drop into your lap at any moment. We continually feel the need to keep our boxing gloves on, ready for any challenge or need to compete. This phase is often supposed.
Another element of my personality that changed was my sense of gratitude. I was and am forever grateful to those who assisted in making life and caregiving feel like less of a battle. They were true blessings. On the balance scale of life, there were more who helped than hindered. The gratitude goal I have would be to try and remain unscathed by the wars we face. Know it sometimes takes the inner bulldog inside us to push forward and get the answers we need and deserve or aid our loved ones. Lace-up your gloves when you need them. Don’t give up your fight, and know the intent to win the prize stems from the core principles of love and care.