Can caregiver burnout be eased with a new shade of fingernail?

I’m the almost-pour-milk-onto-my-mom’s-plate-instead-of-in-her-cup kind of tired. The dump-potato-chips-instead-of-cat-food-into-my-cat’s-bowl kind of distracted. The place-things-on-my-parents’-stairlift-instead-of-carrying-them-up-or-down-the-steps kind of exhausted.

My name is Colleen Steele, and I have caregiver burnout!

It’s not the first time I’ve burned the candle at both ends. I cared for my son Cullen, 25, many times through this level of physical and emotional fatigue. He was diagnosed with pulmonary arterial hypertension (PAH) in 2008 and received a heart and double-lung transplant in 2014.

Throughout Cullen’s battle with a rare disease and recovery from a rare surgery, caring for him sometimes felt like a triathlon in which the events were to swim in circles, cycle through medical care, and run myself ragged. The win was keeping him alive, so certainly it was all worth it, but I couldn’t have done it without proper self-care.

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A month before Cullen’s lifesaving surgery, he was put through a dry run. That’s when, upon visual inspection of the donated organs, they were considered not sufficiently viable for transplant. The fumes I was barely running on to get him to transplant were depleted by that heartbreaking disappointment.

In a previous column, I shared this burnout event, which continues to remind me how bad things can get if I don’t listen to my mind and body. Two pulmonary hypertension and transplant moms found me wandering lost in a hospital that was as familiar to me as my home. “I hadn’t eaten or had anything to drink or closed my eyes in over 18 hours,” I wrote, “and I was under emotional stress. I was unwell.”

The importance of caregiver support

My husband, Brian, passed away in April 2023. Cullen is away at college and his brother, Aidan, 24, is on the other side of the country, working hard at his career. I’m living with and taking care of my parents, Richard, 94, and Margaret, 86, on my own.

A social worker has pointed out that I need caregiver support as much as when I was caring for Cullen, especially since I’m taking care of two people this time. She recommended I do what I did when Cullen was diagnosed with PAH, which is find a caregiver support group or some other village to take me in with understanding and advice based on experience.

The social worker also stressed the value of reaching out to resources that could help. She asked why, since I’m Catholic and my dad is a Marine Corps veteran, I haven’t reached out to the church and the Department of Veterans Affairs for assistance and support. Help is available, but not if I don’t seek it.

Take care of basic needs

Eat, hydrate, shower, and sleep. These are basic needs that every person should make time to do, and they shouldn’t trade one for the other. I think it’s acceptable if I occasionally choose rest over food or hygiene, but not if it becomes a daily occurrence.

Two things help me manage my basic needs: crockpots (one for my parents and one for me) and baby monitors. I cook with my parents’ health in mind, but it’s also nice to prepare something in a crockpot that’s just for me. I won’t skip a meal when I know homemade chili or a Mississippi pot roast is waiting for me. The cameras offer peace of mind by helping me monitor my parents’ safety while I shower or sleep.

When I’m exhausted, I’ve learned to sleep when my parents do, instead of using that time to get chores done. Sleep is more important than housework.

Maddie, the emotional support cat, is helping Colleen lower her blood pressure. (Photo by Colleen Steele)

Finding joy in the spontaneous and frivolous

I woke one morning, looked at my ceiling, and announced to myself, “I’m going to adopt a cat.” I rose from bed with an energy I hadn’t felt in a while, got dressed wearing a smile, gave my thankfully accepting parents a heads-up, and made my way to the animal shelter. Maddie, a 6-year-old tuxedo cat, came to my rescue. She has been in my life for a year, and I can’t imagine my life without her love and the calming effect she has on me. Best spontaneous decision ever!

Whether I treat myself to a manicure at a salon or do it myself, keeping a pretty shade on my nails makes me happy. Most of my work as a caregiver involves my hands, and since I’m looking at them all day, why not make them pretty? It may sound frivolous, or perhaps even silly, but this guilty pleasure reminds me of how good self-care can feel.

In my opinion, the best cure for caregiver burnout is to find support, take care of basic needs, give in to some spontaneity, and indulge in frivolous things. What cures your caregiver burnout?

Note: Pulmonary Hypertension 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 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 Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.