Something went wrong in the middle of spring. With little provocation, I began snapping at my loved ones. My body started dragging and my muscles ached in a way no amount of rest could cure. I had no sympathy, let alone empathy, for anyone else. I simply didn’t care about anything outside of my insulated, isolated bubble.

By the time I thought to google “caregiver burnout” it was already too late. I had been burned out for a good while; I just hadn’t recognized it. After a little research, I learned that caregiver burnout isn’t a single state of being. Instead, there are four stages—the warning stage, control stage, survival stage, and burnout stage—that caregivers move through. Based on the criteria, I was in one of the later ones.

As I stared at the screen, I thought about the long and winding path that had gotten me there. I am the primary caregiver for my six-year-old daughter, JJ, who lives with Rett Syndrome. Over the past fall and winter, JJ hadn’t had any acute crises, hospital stays, or life-threatening illnesses. Instead, there had just been a slow, relentless grind made up of too many caregiving tasks and not enough breaks. There had been a bout of bronchitis. A round of Covid. A trip to a specialty clinic in another city. Multiple requests for new pieces of adaptive equipment. Over time, it had all chipped away at me and left me feeling like a joyless shell of a person.

I felt physically worn down by relentless rounds of caregiving tasks—the feeds, the meds, the clothing changes, the baths—and emotionally exhausted by endless mental logistics and a constant barrage of communication on JJ’s behalf. If Walgreen’s wasn’t emailing about a prescription refill, then a helper was texting to cancel their shift, or the school was updating me on changes to JJ’s daily schedule.

As I dove into my research on burnout, one of the most helpful sites I found not only listed the stages, but also the strategies that can help during each one. I realized I had let things go on for so long that many of the strategies wouldn’t even be effective for me. My therapist reiterated this sentiment when I talked to her a few days later. I was complaining to her about the psychological effect of watching my daughter suffer. “Eventually we can help you learn to reframe that,” she told me. “But not right now. Right now, you need respite. You just need a break.”

My therapist helped me realize that there are times when things like creating a meditation practice, learning cognitive reframing techniques, or practicing mindfulness require a mental energy we simply don’t have. There are situations when we need better ways of surviving before we can focus on thriving.

I think one of the best things we can do when we are struggling with burnout is to give ourselves grace. Give yourself permission NOT to do things. In particular, don’t expect yourself to take on anything that requires an increased cognitive load. If you don’t feel capable of it, then don’t change your daily routine, learn a new skill, or build a new habit—even if you know these things would help. Instead, focus on finding small pockets of time for your mind and body to rest and on locating the people who can help you do that.

Of course, this is easier said than done. When you are a caregiver to a child with disabilities, finding help and coordinating respite can be tricky and difficult—at best. First of all, there is the cost. You are competing with babysitters, helpers, or nannies who could work for typically developing children instead of ones who require specialized care. Then there is the fact that you must train these people and allow for a steep learning curve—especially if there are behavioral difficulties or safety concerns involved. And, of course, no one is immune to family emergencies or illness, so there are going to be cancelations.

I am one of the lucky ones when it comes to backup. My husband is extremely supportive, taking on as much of the caregiving as he can around his full-time job and encouraging me to take breaks when needed. We also employ several in-home carers, thanks to the government support we receive.

Despite this, our situation is still far from ideal and sometimes requires more of me than I feel I can give. Our in-home carers either have young children or work with them, and over the months that led to my burnout, had frequently called in sick. Even when JJ was with those helpers, her tantrums meant that things like changing her clothes or bathing her were two-person jobs. I am the only person with enough knowledge of her health history and prescriptions to make medical decisions on her behalf. So when she was sick—which was often—I became indispensable.

If you are a fellow special needs parent, then you probably know my pain. If you are not, it can be hard to fathom that it is not as simple as a caregiver “finding respite.” This respite can be expensive and difficult to locate and could fall through at any time. Managing helpers, nurses, and in-home carers also requires mental resources we might not have. If you barely have the time or energy to take a shower, how can you advertise, interview, hire, train, schedule, and manage other people?

The thing about caregiver burnout is that it is highly complex and has no easy solution. It is also intricately bound up with many deeply entrenched, systemic problems in our country. Caregivers often have few financial or psychological resources at their disposal and don’t get enough (or, in some cases, any) of what they need at the state or federal level. Support networks usually have to be cobbled together at a personal level—with the help of friends, neighbors, or family members.

This is why, when it comes to caregiver burnout, I don’t put my trust in Instagram posts, bullet-pointed lists, YouTube videos, or any person claiming to have a quick fix. I am also wary of how much focus is put on things like taking bubble baths, doing yoga, and listening to music. These things can certainly help, but no amount of “self-care” is going to take you off a Medicaid waitlist or find you a reliable, professional, well-paid nurse or in-home helper. Until we fix things at a higher level, caregivers will continue to suffer on a personal one.

But there are still things we can do while we advocate for better resources. First of all, I recommend that you find your non-negotiable. What is that one thing you refuse to give up, no matter what, because it is so essential to your well-being? For me, it is exercise. Everything else—home-cooked meals, my writing, communication with friends—can be put on hold when I’m burned out. But I always find a way to move my body, somehow, each day.

Next, accept the amount of time you have to work with. You can’t take a cruise or go on a retreat right now, but you can probably still carve out an hour here or there. (Or if you’re lucky to have a partner like mine—even an entire day). And once you do carve it out, listen to what your mind and body need when deciding how to use your time. Though I know it’s hard, try not to worry about using this time to its maximum potential. It will only lead to more anxiety.

Lastly, decide how you are going to use your most precious resource—your mental energy—because you don’t have much of it in the middle of a burnout. Over the months that led up to my crisis, I made the mistake of using most of my extra mental bandwidth on things for JJ. I watched videos about literacy and augmentative communication devices. I learned about wheelchair van modifications. I applied for grants for physical therapy equipment. This only caused me to burn out more quickly.

Instead, I have now pledged to use most of my extra mental energy on myself and my needs. If I have to process the distressing things I have seen and heard while caring for JJ, I write or listen to podcasts about caregiving. (My favorite is The Rare Life). If I want to give my brain something new and interesting to think about, I pick up one of the many non-fiction books that have been languishing on my nightstand.

I am currently using one of my rare pockets of time and energy to draft this post. I am still burned out and don’t know if or when my burnout will end. But I do know that writing has made me feel a little bit better in this moment. I’m glad it’s how I have chosen to take care of myself. Even though self-care might not be the easy answer some people want it to be, there is still value in honoring yourself and in making your physical and mental needs a priority.

If you are a caregiver and find yourself traveling the road I was on—one with too many tasks and too little respite—keep an eye out for dangers along the way. If you find that you are snapping at the small things or don’t feel joy the way you used to, do what you can to pump the brakes on the stressors in your life. Because the last thing I want for any caregiver is for them to crash and burn like I did.  

This post was written and shared by Claire McMurrary, Ph. D. She blogs at https://www.idontknowhowyoudoit.org/ (a blog for parents of children with differences, disabilities, and diagnoses).