Actionable ways to celebrate National Caregivers Month

After 15 minutes on hold, I hesitantly opted for a callback when an operator was free. Though I am sure this feature was created with the best intentions, it is a one-time pass. Meaning that I am committed to keeping my phone free, with no bathroom breaks and a limited ability to return to work. Failure to follow these rules means I could miss the callback and my place in line.

Fortunately, I was ready when the call was returned almost 30 minutes later. I shared the requested information and was placed on hold. Five minutes into the call, I hit a dead end. The schedule for the clinic hadn’t been released yet, and I needed to call back. I took a moment to breathe.

I think back sometimes to when I was on the other side of this looking glass. Before Friedreich’s ataxia (FA) entered our lives, I had such a lack of understanding. Even as an empathetic administrator, I never fully grasped how my professional actions rippled across the lives of others. As we battle this disease that has devastated the body of our 11-year-old daughter, Amelia, we also find ourselves grabbing our armor to engage systems.

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Stress by a thousand systemic touch points

Amelia is engaged with five different departments at a single hospital and seen by a team at another hospital in another state. Apart from medical care, she is involved in two other major systems that require coordination. They all have their own processes, paperwork, and acronyms.

For one intervention Amelia regularly receives, every two weeks we schedule the next two appointments because they have adopted flex scheduling. This means we don’t have a recurring date or time but are plugged in where we find spaces on the calendar. In a life that FA is already complicating, it is tiring and confusing to coordinate.

The specialists working with Amelia are incredible, and I am so grateful for them. The struggle, though, is that many of our systems are not created with worn-down and overwhelmed populations in mind. While professionals would never recommend an intervention for an individual without an assessment, it seems to be done frequently with large systemic changes that impact hundreds of people. I have professionally watched the seemingly good idea pitched in the boardroom without a holistic evaluation. We can do better.

Celebrating National Family Caregivers Month

This November, while organizations put up banners to celebrate National Family Caregivers Month, host events, share stories, and promote appreciation on social media, let’s also take time to do something meaningful and life-changing: Audit your workflows.

I am asking leaders of organizations that serve others to pull out the shoes of a caregiver and put them on. Then, walk through your system from beginning to end. What do your intake forms look like? What does notification of denial or approval look like? Can a worn-down and stressed-out population understand them? As a licensed social worker with over 20 years of experience working with large systems, I have received these notices and been confused.

How people schedule appointments, and how much time does it take? If people are applying for support, is it streamlined? Do you really need all the paperwork that’s being requested? Can there be collaboration across systems so that one form meets the needs of many?

Systematically, think about the time and energy it takes to be on the receiving side of your system’s care. Then do three things: Multiply it by six for all the different systems many of us are in. Imagine balancing it while also parenting a child with special needs and working full time. Lastly, think about how much determination it takes to get it all done with little sleep and a broken heart. And then, maybe, you will begin to comprehend the weight of being a caregiver.

If you don’t have an advisory board of current and former clients, please consider creating one. The voices of lived experience are critical around the decision-making table.

If at any point in this exercise you fall back on the inability to change due to state or federal requirements, I am going to ask you to dig deeper. Everything changes with time; sometimes it’s just a matter of having critical conversations.

Maybe things are as efficient as they can be, which is wonderful. But even if this is true, this exercise can deepen compassion and understanding.

This month, celebrate caregivers with some of the best gifts you can give: a holistic organizational assessment, strategic leadership, empathy, and the support needed to care for those we love. We are counting on you.

Now please excuse me, I need to go call and try to schedule that appointment. Wish me luck.

Note: Friedreich’s Ataxia News 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.