How to Care for the Caregiver

Last updated: May 2022

“But honey, what can we do to help you?” It’s a question that echoes in my head from time to time. It’s a question I remember my mom asking while Keegan, my husband with AS, recovered from one of two total hip replacements. I had a baby on top of all that and worked a full-time job. It was one of the first times in my life I remember having a mental breakdown, and not understanding why. Looking back, it’s easy to see. That’s a lot on one person’s shoulders.

For years, I’ve struggled to answer this question. At first, my response would be something like, “Oh! Don’t worry about me. I’ll be fine. I’m just having a moment.” But, as depression slowly crept back into my brain, my answer became darker (and never revealed to anyone). It sounded more like, “Because I don’t deserve the help.” Yes, that took a dark turn, but it takes acknowledging the dark to move toward the light.

Enter in cognitive behavioral therapy (CBT). I recently switched to a therapist who specializes in cognitive behavioral therapy. Although I have a degree in psychology and studied the theory behind CBT, I never put it into practice. Since working with her, I’ve discovered my responses to this answer.

1. Offer a break

One of the hardest things for me as a caregiver is to ask for a break. Like, it feels impossible to do. There’s always another task on my list. Or maybe there’s that one work thing I still need to wrap up. The most relief I ever feel is when someone offers me a break. It can be as simple as, “Go outside for 10 minutes. I’ve got this.” It could even be something like, “Why don’t you and Keegan go get massages together?” The key is that you offer. Sometimes, us caregivers are just in the thick of it and it’s tough to be okay with taking a break. (And sometimes we need to see that things will be okay without us!)

2. Offer to be a shoulder to cry on

Sometimes I wonder who AS affects more emotionally: me or Keegan. I’ve seen him through pre-diagnosis, diagnosis, treatment, many tests, surgeries, etc. And I know that AS sucks and that Keegan is someone to be put on a pedestal for all his strength and resilience. I know I’m his main support person, and I’m proud of that. But like a cup, sometimes I get too full. I’m overflowing with not only his feelings but my own. It’s hard to tell someone, “I just need to talk without any advice” because people often jump to giving advice. It’s a gift for someone to just hear what I’ve been going through.

3. Ask what my support system is

I forget that I need a support system, too. I’ve been a caregiver for over 10 years now and I love talking about Keegan’s support system. Yet, I don’t have that set up for myself. I’m putting those pieces together now (finally!). For me, a support system must include:

  • Ways to take care of my body (healthy food and exercise)
  • Ways to blow off steam (reading romance novels and getting a glass of wine with a friend)
  • Ways to enjoy time with Keegan (fun date nights)
  • Ways to practice spiritually (meditation, church gatherings, and goddess readings)

For all you caregivers out there—I see you. Make sure you ask for help, too.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Do you notice worsening flares in colder weather?