A different perspective on what being an MS caregiver actually means

I’ve been quiet lately. It’s not because I haven’t had anything to write about, but because life decided to throw multiple crises into the mix.

Over the past couple of months, my mom underwent both thyroid and major spinal surgery, my cat decided to eat part of her litter mat and needed abdominal surgery, and my mom’s cat ended up in the vet emergency room with a urinary blockage. Meanwhile, there were other animals to care for, a household to manage, insurance companies to battle, and a full-time job that didn’t magically disappear. I split my days between the vets, the hospital, and my mom’s house, trying to balance everything and keep things running.

Somewhere in the middle of all that, I was still supposed to be taking care of myself — that minor detail of living with multiple sclerosis (MS).

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I’ve lived with MS for over 20 years, which means I’ve spent the majority of my life on the receiving end of care. Between relapses, surgeries, treatments, and recoveries, on many occasions I’ve needed someone to step in and help. My mom has been one of those people, showing up through circumstances neither of us could have anticipated when I was diagnosed at 16.

I’ve always appreciated what she’s done for me. But these past couple of months have given me an entirely different perspective on what being a caregiver actually entails.

It’s not necessarily the individual responsibilities that are so overwhelming, although there are plenty of those. It’s the accumulation of everything that needs to be done, remembered, coordinated, anticipated, and occasionally figured out on the fly. There are phone calls, appointments, household responsibilities, unexpected complications, and a seemingly endless mental inventory of what needs your attention.

What surprised me most was how quickly my own priorities shifted. There was no conscious decision to put myself on the back burner. It was more like a series of little adjustments. Something needed to be handled, so I handled it. Something else came up, so I rearranged my day. I’d get back to healthy eating and exercise when there was more time. I’d catch up on sleep another night or take a break once things settled down.

Except things have a funny way of not settling down when you’re waiting for them to.

Before I knew it, weeks had passed, and I’d spent most of them organizing my time around what everyone and everything else needed. Even when I wasn’t physically doing something, I was thinking about the next thing that needed to be done. I didn’t give it much thought at the time; I just dealt with whatever was in front of me. My mom needed help, the animals needed care, and there were things that simply had to get done

Of course, my MS hadn’t exactly agreed to those terms. Fatigue, brain fog, and neurological symptoms were still very much part of the equation, even more so because my schedule was so imbalanced. And despite spending years learning the importance of pacing myself, recognizing my limits and actually respecting them became two very different things when someone else was depending on me.

The help you see, and the parts you don’t

I started thinking about how many times my mom must have navigated similar circumstances over the last two decades. How many times has my health interrupted her plans? How many things has she rearranged or postponed because something was happening with me that needed her attention? How often has she been exhausted herself, yet continued managing whatever the latest MS-related crisis required?

I know about some of those sacrifices. Others, I suspect, happened so quietly that I never even realized they were being made.

When you’re the person receiving care, you see the help that reaches you — the person who shows up at the hospital, drives you to appointments, helps you through recovery, or takes over responsibilities when you’re physically unable to manage them yourself. What you don’t necessarily see is everything that had to be rearranged on the other side to make that help possible.

A few weeks of caregiving certainly doesn’t compare to the decades my mom has spent supporting me. I wonder how many other caregivers have grown so accustomed to making those little adjustments for someone else that they barely notice them anymore.

I’m still trying to catch up from the past couple of months. My own health has been less than cooperative, my to-do list is still a mile long, and when I initially sat down to write this column, I couldn’t string two coherent thoughts together. But somewhere in the middle of this exhausting, rather chaotic experience, I found myself looking back at the last 20 years a little differently.

I’ve always appreciated the care I’ve received. Now I have a much deeper appreciation for the cost of that care.

Note: Multiple Sclerosis 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 Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.