and Care Coach Maura Horton
In a month where Valentine's Day is the centralized theme and love is said to be in the air, have you ever thought about the different ways you show love and devotion? For me, a significant piece of caregiving and the way I demonstrated compassion was by protecting hearts. I was delicately and intentionally shielding not only my husband's heart but mine and those closest to us, including our children. Not conversational candy hearts but true beating palpable beloved hearts. It seems odd to describe the need to protect a 6-foot-four-inch athletic man’s heart as I had always thought of him as my protector. But at times it seemed inhumane to witness and understand the different ways people would or would not approach him after his diagnosis of Parkinson's' disease. The pre-diagnosis and post-diagnosis shift of treatment varied so greatly that it tore my heart into fragmented pieces, that still haven’t fully healed. I shifted from a bystander seeing others uncomfortable with his slowed speech creating an avoidance of conversations. The confusion with a delayed thought process or changes in body movements seemed to devalue interactions as if his disease downgraded his ability. The hurt I witness first began with what seemed like small shifts. From watching my loved one's face turn from a smile to a puzzled frown, to excusing behavior or a moment with an apologetic explanation. I even watched family members shift from supporting my husband’s athletic career and hanging off his every word to rarely reaching out. This began a preservation of sorts. My determination and devotion to protect my husband’s heart and wellbeing only escalated.
“The walls we build around us to keep sadness out also keeps out the joy.”
I was unable to mitigate every interaction or conversation, but I quickly became a game planner for the day and events, becoming an X and O coach if you would. Understanding people and places, as well as anticipating unknown factors and how they might intersect became a major part of my life. The protection of hearts then shifted to my children. I wanted to protect their rose-colored lens from feelings of exclusion and othering. Middle school is often awkward for many, but the added element of difference can multiply it. I remember my daughter's raw feelings after a planned father-daughter donut day at school and her classmate’s confusion about why he needed a ‘different’ chair.
Her feelings of nervousness and anxiousness were palpable. She had never thought of anything other than pride in her father until her peers outwardly started to question, “What is wrong with him?" I protected my child's hearts by making sure they were equipped with the right tools to handle the situation even before it happened. I was brutally honest with them, often trying to help explain looking at things from a different point of view so that when they encountered someone that didn’t understand, they wouldn’t immediately feel defeated. They would automatically have a response or start to engage in a conversation that provided them with security and confidence. I often said what someone else says, says more about them than it does you.
“When the wind of change blows, some people build walls, others build windmills.”
Being a fortress for my heart was paramount to survival as well, rarely exposing myself to new friendships or relationships. I wanted to protect my heart from feelings of exclusion and lack of being part of a centralized group of people I felt truly related to– Me. As life felt out of control, my need to dial into the things that mattered most–intimacy, tenderness, and pure love was my survival. My inner circle became very small; creating an isolation barrier was, in my mind, necessary at the time. My devotion never wavered, and I believe it was the unspoken power of love that bound us. The kind of love that can’t be described in a sappy Valentine’s Day card.
Although admittedly I couldn’t always protect everyone to not “feel” life, the complexities of people, and uncomfortable situations that make us question our core, I certainly tried. In hindsight, I sometimes wonder if by not letting others in I also eliminated opportunities for joy. It can be a delicate balance but know that as caregivers we are always doing our best to make love win. So, however you celebrate this month of love, please know the silent ways we love are just as powerful.