The importance of self-care when you’re a caregiver

November is National Family Caregivers Month. Here, one contributor — who is also her adult sister’s full time caregiver — reflects on the importance of self-care. This essay was written with permission and a blessing from our contributor’s sister.

Thanksgiving Day marked the two-year anniversary of when I became a full time live-in caregiver. On that chilly November morning two years ago, while I watched the Macy’s Thanksgiving Day Parade on TV with my husband, Ian, and the smell of turkey drifted in from the kitchen, our life was about to turn completely on its head.

Not long after the pumpkin pies were finished, Ian and I learned how unsafe my younger sister’s living situation had become. My sister is disabled and unable to work, and the family member she was completely dependent on was stealing her money and neglecting her needs. It was clear she needed to move out immediately — so she moved in with us that night.

The level of responsibility combined with the suddenness of it all was overwhelming, but I swore to myself that I’d do right by her. After her previous living situation, I wanted my sister to feel loved, safe, supported, and cared for — and I wanted to take my new responsibilities as a caregiver seriously.

So I decided to make my sister’s needs my number one priority because I thought that’s what any good caregiver would do.

I didn’t know any full time live-in caregivers. My mental image of the perfect self-sacrificing caregiver was based entirely on my own expectations for myself, rather than the advice of real-life caregivers. Because everything happened so unexpectedly, there was no time to prepare for our new roles by researching information or asking for advice. We didn’t have the chance to find a support network or talk to a therapist about transitioning from 20-something newlyweds to fully responsible caretakers of another adult.

When my sister moved in, Ian was working full time and I’d recently gone back to college to finish up my degree. Adding a dependent threw us into financial crisis. Ian worked overtime and pushed for raises so we could try to stay afloat. I dropped out of school. There wasn’t enough money for college, and by caring for my sister’s basic daily needs and taking her to regular doctors’ appointments, there wasn’t enough time either.

Since we were financially dependent on Ian, I was the only one who could drop everything to become a full time live-in caregiver — and that’s what I did. I’ve never regretted leaving college because I don’t know how we possibly could’ve made it work otherwise. But saying goodbye to school seemed to indicate that I wouldn’t have time for myself in this new season of life.

My sister has a rare condition, and that means seeing a lot of different specialists on a regular basis. When I started taking her to appointments, each doctor’s priority was my sister’s health and needs — as it should be.

But because I wasn’t the patient, her doctors didn’t know how little I had left to give.

And it was becoming a problem.

The calendar quickly filled up with appointments, sometimes as many as three or four a week. It felt selfish and neglectful to say I needed to push the appointments back because of dwindling time and energy. Instead, I took a deep breath and said, “We’ll be there.”

***

As I prioritized my sister, my calendar became so filled up with her medical appointments that I stopped scheduling my own. I neglected my therapy appointments, skipped regular doctor visits, and put off getting new glasses. When my tooth started hurting, I grabbed ibuprofen rather than call the dentist

I completely disconnected from my friends. Prior to becoming caregivers, Ian and I hosted regular board game nights and a weekly book club. I loved meeting up with friends for coffee or shopping. But I’d become so tired that I often didn’t feel like I had the emotional bandwidth to even shoot off a text or check Facebook.

As the months went by, it felt like my entire life — and even my entire identity — could be boiled down into one word: caregiver.

I’ve heard parents, especially moms, say the same thing about parenthood — how they lost themselves in their desire to do right by their kids, the people who depend on them the most.

Societal pressure can make parents internalize the message that focusing on themselves is selfish, and I started to feel that same pressure as a caregiver. My sister never asked me to sacrifice everything for her sake, but it felt like that’s what society demanded — so that’s what I demanded of myself.

While I haven’t become an expert on caregiving in the past two years, I’ve definitely learned a lot.

Most importantly, I’ve learned that in order to have the emotional, mental, and physical energy to care for another person, I need to first take care of myself.

***

Because I hadn’t been caring for myself, I quickly burned out.

Earlier this year, my sister took me aside. “Kelsey,” she said, “I’m worried about you. I know you want to take care of me, but I want you to take care of you.” Ian started voicing similar concerns, saying he wanted me to focus more on myself because he could tell I was running on empty.

The burnout must have been visible, because when I finally made it to my own doctor’s visit, she said she was prescribing self-care.

Eventually, after several people said the same thing, I started making self-care a priority.

Since I’m highly introverted, self-care often means spending time relaxing by myself — playing video games, coloring, binging shows on Netflix, going for walks. But it also means spending more time on the other relationships in my life, especially my marriage.

Self-care means working from home when I can because it reminds me that I am more than a caregiver. It means looking into going back to school via online classes. Just taking even one class at a time would let me focus on myself and work towards a dream.

When my sister has bad days, she can’t leave her bed. On those days, it’s much harder to make time for self-care. But the days when my sister is the most reliant on me are the days when I have to practice self-care the most. That can just be spending a few minutes with my cat and drinking a mug of tea. I can let my husband take over once he gets home, and then watch a few YouTube videos and go to bed early.

Self-care looks different depending on the day, but it’s always important.

It’s been really difficult, but I’m learning to say no. I’m telling my sister’s doctors, “Actually, an appointment in two weeks doesn’t work with my schedule,” so that I can go to my own doctor’s appointments, so that I don’t have to cancel a lunch date with my friend, so that I can have a little more time to breathe.

The fact that my sister is very supportive of me practicing self-care makes it easier to say no, but it’s still hard to not feel like I’m failing her by choosing to take care of myself. But the more I carve out moments for myself and say no when I’m completely exhausted, the easier it gets.

Practicing regular self-care is important for everyone, but it is absolutely essential for me since becoming a caregiver. Without it, I don’t have the energy to be there for my sister. But perhaps even more importantly, if I don’t focus on self-care, I don’t have any energy leftover for myself.

I’m a full time caregiver, and caring for my own needs matters, too.

*Written with permission and a blessing from my sister. After seeing me burn out, she said that she and hopes other caregivers learn the importance of caring for themselves.