For National Family Caregivers Month, I’d like you to hear from my mom

As I considered this column’s theme, I concluded I didn’t want it to be about me. At Bionews, the publisher of SMA News Today, we’ve been discussing several questions that might guide some of our columns this November, which marks National Family Caregivers Month. And it seemed only fitting that those questions be answered not by me, but by my chosen primary and family caregiver, Heather Halsey Dye — also known to me as Mom.

It’s a privilege to highlight her perspective today, and I’m grateful to her for allowing me to share it. Excerpts of our conversations and email exchange follow. Take it away, Mom!

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HB: What’s one caregiving resource you wish you’d known about earlier?

HD: Honestly, there weren’t many resources for parents of children with chronic or seriously medically fragile diagnoses. I compiled information geared toward caregivers for elderly parents or grandparents, like AARP’s supports. I also sought other parents navigating the same uncharted territory and finding ways to create best practices.

I was referred to Turnstone Center for Disabled Adults and Children (as it was called in 1998, now called Turnstone Center for Children and Adults with Disabilities) when you were 3 years old, and their support from that early stage made a world of difference as a mom. Turnstone helped with needs like physical or speech therapies, but was also a networker for support that helped manage financial preparation, health insurance questions, and overall planning outlook for caregiving.

I didn’t know early on that caring for a loved one could be not only a need, but an opportunity for connectedness that supports personal growth alongside supporting someone in an individually rewarding way. This opportunity of connectedness among caregivers affirms that they’re beyond valuable to not only the person they care for, but also the community.

What common caregiving advice didn’t work for you — and what helped instead?

The phrase or notion, “Just ask for help.” Yes, asking for help is truly a key, but the lack of support caregivers often experience is in no way correlated to their lack of asking. I have needed to ask for help in some form every day since you were diagnosed. This is help in understanding, navigating, and implementing all the care necessary for you to thrive.

So advising me to ask for help doesn’t meet a need, as I’m well-versed in this area. What I’d prefer others ask is whether they’re able to learn a helpful task or find help that supports my family’s already well-thought-out caregiving plan, or that they inquire about what works in our day-to-day strategy.

It’s helped me to practice faith — leaning into a spiritual space that fuels connectivity with God and develop a place where I experience grace. This has been a driver of rebounding from tough moments, days, or weeks. Ability to withstand or recover quickly from difficult conditions is imperative for caregivers, and for me, this means I can negotiate for what I need and navigate systems.

Grace and space for thinking prepare me to adapt to different circumstances or accept what’s happening. I’m quick to remind myself and others that this doesn’t mean my reality is immune to frustration, venting, hard days, or being real about hurdles I and many caregivers face. And applying grace allows you to celebrate the successes of each day, great or small. Incorporating the ability to laugh easily and appreciate humor is another helpful method.

What’s one thing you stopped doing that made caregiving more manageable?

Letting the opinions of others who’ve never been in my role — or any caregiver role  — affect how I felt about me as a person and my position as a caregiver. This has been quite freeing. While many are well-intentioned, I learned that many others give opinions which mask a lack of knowledge or allow themselves to feel less uncomfortable about seeing someone in a role that’s so demanding at times.

This isn’t to say I stopped seeking advisement, mentorship, or guidance among educated experts or agencies. It means, rather, I learned to feel empowered by my expertise and the force I possess in my role as a caregiver. It’s much like the freedom a young mother might share when she realizes she doesn’t have to apply all the advisement she receives while shopping with the baby she’s pushing around in her cart.

You start to decide, “This is the best place for me and the best way to handle the situation,” to ensure quality of life for your family as a whole. This has allowed me to focus on healthy, wise advice that aligns with my caregiver approach, to be positive, pray, and find strength in God leading me, and to seek ways to educate those who are well-intentioned but lack the knowledge and narrative to communicate in a healthy way with caregivers.

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.