What receiving care from a friend taught me about giving care
My relationship with Pam has made us both better caregivers and friends
“If you need anything at all, don’t hesitate, just give me a yell!” Pam says on Saturday nights as she tucks me into bed.
“OK, you, too!” I reply, and we giggle and bid each other good night. She closes my bedroom door and goes to sleep in the adjoining bedroom, where my Alexa and Echo devices act as an intercom system if I need help during the night. Because of the muscle weakness I experience due to SMA, I can’t roll over or adjust my position when I’m lying down, so it’s important to have someone nearby.
Over the years, many of my friends have eased into the role of caregiver for me, starting as a chauffeur or a coffee cup holder and moving on to bigger responsibilities. But not Pam. I met Pam as an essential caregiver and complete stranger 15 years ago.
I had accepted a job in Indiana, a 10-hour drive from everything that was familiar to me, and I had boldly told my new boss that I needed her help recruiting some caregivers, since I didn’t know anyone there. My boss graciously connected me with a disabilities ministry at a local church, and through their director I was introduced to three incredible young ladies. Pam was one of them.
Pam was an athletic trainer/retail worker/volunteer-in-everything, smart and energetic and bubbling over with joy and love to share. She had a little bit of experience as a certified nursing assistant but didn’t know a single thing about me, my disability, or my needs. It didn’t seem to bother her, though, because she jumped in with both feet and learned quickly. Since my care team was small and accommodations weren’t ideal, she learned all the skills for every aspect of my care, without the conveniences of a lift system or accessible shower. These days, new members of my caregiving team often look to Pam as the “professional” who sets a high standard for quality care.
Mutual care
Pam Leeper and Connie Chandler, on Pam’s wedding day in 2013. (Courtesy of Connie Chandler)
It didn’t take us very long to discover that we had a lot in common. Besides being the same age and having the same kind of thick, blond, wavy hair (which was helpful for styling purposes), we shared a mutual affinity for Disney princesses and Christian contemporary music from the 1990s. We also shared a common faith and relationship with Jesus, which I believe has been the stickiest glue that has bound us to each other as sisters for so many years.
We’ve had more than our fair share of adventures: road trips to Michigan, Chicago, North Carolina (in a snowstorm), and Colorado (on a train); live concerts that made us shriek, cry, sing, dance, and cover our ears; and international community meals, parties, and crazy mishaps. She sat by my hospital bed when I was sick with pneumonia, and I sat by her side as a bridesmaid when she got married 12 years ago. We’ve seen each other through heartaches and celebrations, sufferings and successes.
In a uniquely beautiful way, our caregiver-patient relationship has evolved into a deep friendship in which we are mutual and reciprocal caregivers for each other. We’ve had many conversations and brainstorming sessions, and with inspiration from coffee and Jesus, we work through all sorts of challenges together.
Pam does a lot of things for me that I can’t do for myself, but she has taught me that I have a lot to offer, too. I can love, pray, listen, and advocate; I can be sensitive, responsible, and thoughtfully delegate care tasks to a broad team to prevent overdependence on my friends as well as their burnout. With these realizations, she has empowered me to find more creative and sustainable solutions for my lifestyle as I get older, and she’s helped me become a better caregiver and friend.
It still amazes me that Pam and I might never have met if it wasn’t for the fact that I blindly reached out for help and she blindly stepped forward in response. I’m glad I have a friend like her. And she knows that if she needs anything at all, she can just give me a yell, because I’m here for her, too.
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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