Keep an open mind, and 3 other tips for working with caregivers

How to best handle those hard discussions with members of our teams

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by Katie Napiwocki |

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As SMAers, we’ve probably all been there.

We work tirelessly to build a caregiving team. We train, explain, and expose the inner workings of our dignity. We allow new hands and energy into the routine of our daily needs. Our schedule finally cruises along swimmingly — then suddenly, life happens.

Schedules shift. Needs fluctuate. Personal preferences break the water’s surface, breathing life into new circumstances for either ourselves or our care attendant.

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Running a care team is a full-time commitment for many SMAers, myself included. At its most robust point over the past couple of years, my care team involved eight attendants who helped me navigate from sunrise to sunset, as well as repositioning me during my nightly slumbers.

My interpersonal connections with my caregivers often flourish, but the balance of life nudges us to accept the good with the bad. In the world of cares, the dynamics we encounter are a kaleidoscope of minute daily occurrences, swirling our story of independent living into focus, constantly evolving and ever colorful.

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Whether you’re setting intentions of building a care team or you’re a seasoned explorer in the field, difficult situations will arise, sometimes requiring hard conversations. Perhaps you’ll need to reduce the amount of hours you can offer a beloved caregiver; perhaps you’ll need to terminate a caregiving relationship that isn’t jiving with your personality.

No matter the reason, the following tips can help to ease the fallout of stormy caregiving discussions.

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Avoid emotionally charged interactions

SMA might render us absent of neurological reflexes, but emotional ones can knock us with just as much gusto. Remembering to breathe can be painfully difficult. As a passionate person, I can relate to the struggle of keeping my wheels on the ground when I’m in activist mode or wild with frustration.

A wise person once told me that if it feels good to say it in the blaze of a fierce moment, you probably should let the moment pass and revisit when the smoke clears.

Written words leave room for assumptions

Texting with my caregivers is my go-to for navigating all the nuances of surviving and thriving in my care routines. Yet, I’ve experienced the greatest degree of misconceptions and communication hiccups when I’ve attempted to carry out convoluted discussions via text message. Our body language speaks volumes — even the shift of an eye, the tension of a shoulder, or the vibe of our energy can alter how another person perceives our intentions.

Talking face to face is more likely to invoke a heart-driven conversation rather than a maze of words derived from a defensive brain.

Listen to subtle whisperings of intuition and autonomy

Our greatest and most powerful advocate lives inside us. Compassion and flexibility are vital components of the complex caregiving relationship, but sacrificing our mental, physical, emotional, or spiritual well-being for the sake of another can forge a direct path into the darkest crevices of the forest.

If a caregiver is making unreasonable requests that jeopardize your quality of life, it’s acceptable to initiate positive changes for yourself. With SMA, we often develop strong intuition about our bodies and our intricate needs. Any caregiver who has your best interest at heart will work with you on changes and offer understanding.

Keep an open mind

Many of us have peeped unsavory glimpses of inspiration porn and immediately wished to cleanse our eyeballs with a strong dose of social justice. While “the only disability is a bad attitude” posters will never be my kink, I can appreciate how our attitude plays a role in our ability to form healthy bonds with caregivers.

If at all possible, try to achieve compromise during conflict. Instead of simply hearing to respond quickly, try listening to gain common ground.

On my journey with caregivers over the years, I’ve learned some enormous, daunting, and humbling lessons. Every day, I continue to learn and grow. The hardest part has always been giving myself enough grace to make mistakes. From there, I can reflect, pick up an olive branch, and draw a map in the sand to illuminate the way toward new horizons.

While this column is a resource specifically for people living with SMA and the loved ones who occupy their orbit, it’s helpful to emphasize the endless ways in which we are humans, above all. Being human comes with as many beautiful experiences as it does hard emotions, tough choices, and sticky interactions. Escaping uncomfortable caregiving encounters is often an unrealistic expectation, but modifying our response to them is entirely doable.

As one of my phenomenal caregivers likes to say, “Life is a roller coaster with inevitable ups and downs that are unique to each of us, but we get to choose who we want to ride our roller coaster with.”

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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