A Caregiving Comfort: Control

Louisa
There are many circumstances that can challenge our sense of control. Certified Caregiving Consultant Louisa Stringer reflects on a time when she felt lost and what eventually brought her stability. You can read more of Louisa’s writing on the caregiving experience here.

When I left the Dana Farber Cancer Institute after my daughter’s first visit, a three-ring binder full of minutiae, tears in my eyes, mustering strength from the depths, I felt completely out of control. It was as if I were alone on a tour bus in a foreign country during a hurricane with a Charlie Brown parent-voice tour guide offering points of interest all the while I couldn’t see anything through the dirty-lensed glasses suctioned to my face.

One of the biggest realizations to me in this moment, and quite honestly for the next several years, was that I was not driving this bus. When a cancer diagnosis, or any detrimental diagnosis, is given a patient, and equally so the caregiver, maintains a state of shock that reverberates throughout all aspects of their life. And in typical life fashion, the bus never stops moving. Sitting comfortably on this ride does not come easy. One cannot take a long journey through tumultuous terrain standing up. Even amidst the bumpy ride, we find meditation and more stability when we are sitting.

The weather happening on the outside of this bus plays a big role, too. This hurricane--this emotional storm system--brews day in and day out. As a caregiver, I could not control the whirlwind that was happening to my family, the personal hardship and mental toll it took on my child, my other children, my spouse, and myself. Even though this weather was out of my control, there is great comfort in knowing nothing lasts forever. As the years passed the winds ceased, the clouds disappeared, and the sun came out. Time is the great prevailer.

This bus constantly made new stops as intelligent individuals and groups hopped on to offer tour-guide-like guidance around protocol, plans, and the overall situation. Amid this flurry of voices, I often felt lost. But the great thing about being lost is there is always potential to be found. And learning a new language is possible. I eventually realized that if I leaned into advocating for my daughter and asking questions the language I needed to communicate about her care would come and I would understand more. I will never understand why my daughter has to go through this but knowing better how to communicate with her team, and with her, is vastly important.

And those dirty, muddy glasses? While I initially perceived them as being stuck, some careful adjustment in how I was framing the situation helped me recognize that they just needed to be peeled off. As the days and nights passed, those glasses eventually came off thanks to a combination of time, patience, and hope. I still remember the first morning I focused, laser clear, on moving forward. Sometimes it takes just the simple act of a new day to provide clarity to bring about the greatest sense of stability.

Tony Dungy, in his book Quiet Strength: The Principles, Practices & Priorities of a Winning Life, says what we all know but sometimes find hard to hold ourselves to: “You can't always control circumstances. However, you can always control your attitude, approach, and response. Your options are to complain or to look ahead and figure out how to make the situation better.”

I still travel on the bus, but now it is a very smooth road--the weather is beautiful, I understand the language of the country I am traveling in, and I can see it all so clearly. Adjustments to my priorities, focus, and attitude along with the power of time brought with it perspective, clarity, and peace. And that is everything.

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