The day my new multitasking caregiver and I learned to find our rhythm
Good caregiving, like a good friendship, sometimes requires gentle boundaries
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Caregivers are an essential aspect of my life with SMA, because I need assistance to do most of my activities of daily living. But I am learning more and more that caregiving is a strange mix of the deeply practical and the deeply personal — it’s as much about encouraging each other as it is about putting on my shoes every morning.
One of the greatest gifts of having friendship caregivers is that we get to talk all the time. It can sometimes feel like an endless slumber party with my besties, when we have this regularly scheduled date together every week to “dish” or “spill the tea.” From the moment they arrive, we start catching each other up on the happenings of our week, from the mundane to the scandalous. It is very hard for us to keep secrets from each other, and why would we want to? Caregiving requires so much physical vulnerability from all of us, we might as well be vulnerable with what is on our minds and hearts, too.
The multitasking muscle
Talking at about 20 miles a minute is so fun and often hilarious, but it also comes with challenges. Some caregivers can chat effortlessly while cooking a meal or dressing me, while others do not have a single multitasking muscle in their body. Deep in conversation, we might forget to plug my wheelchair into its charger, or put on my deodorant, or add the sugar to a recipe. After they leave, I might remember there is laundry sitting in the dryer or items I needed to have.
If I really have to go to the restroom, I better not ask my friend about a subject that I know she’s passionate about, because I will hear all about it before I reach the toilet. And if she asks me about the latest book I’m reading, it will certainly take us three times as long to get through my ready-for-bed routine.
A few weeks ago, a new caregiver was giving me a shower, and I was trying to get to know her better, to put her at ease. I asked her about her family, job, and friends, and she cheerily told me story after story — even after we ran out of hot water! I just sat there under the water while she talked and waved my soapy, sudsy loofah around in her hand. We laughed about it, and I assured her that she had many admirable qualities, just not this one. We would figure out a better way.
When she arrived the following week, we had a cup of tea at the kitchen table and spent time just talking. When our tea mugs were empty, I pointed out that we love the same kind of music, so I suggested we turn on a playlist to listen to while I got my shower. We even turned it up pretty loud, to keep from talking too much!
It worked better than I imagined: I got a thorough wash and rinse, we didn’t run out of hot water, and we bonded over Rend Collective and ABBA.
That small tweak — talk first, and then let the music do the talking — reminded me that good caregiving (and good friendship) sometimes requires gentle boundaries. We don’t have to choose between connection and competence; sometimes we just need a simple rhythm that honors both. And if that rhythm happens to include Irish praise and a fully charged wheelchair at the end of the day, even better.
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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