Facing Caregiver Burnout
There are nights I wonder whether I'm taking good enough care of Keegan, my husband with AS. Have I done enough for him today? In the last week? Am I doing everything in my power as a caregiver to help him? There are nights I also can't begin to entertain those thoughts. Maybe Keegan's going through a rough flare-up, and my mind just can't grapple with the emotional and physical labor it takes to be a caregiver.
When I entered my 20s, I never thought I'd end up being a caregiver for Keegan. We knew something was wrong but hoped it'd be a simple fix with the right physical therapy, yoga, supplements, etc. My life shifted in the first 5 years dramatically, and I've never given myself the time to think about how it's impacted my life. My therapist recently asked me, "How does it feel for you to be Keegan's caregiver?" And honestly, it's the first time anyone has ever asked me that question. This year, I've decided to explore more of what it means for me to be a caregiver of someone with AS, how it impacts my life, and what signs and remedies I find to helping me cope with the burnout.
It's hard to admit that I'm burned out
I go through burnouts more often than I like to admit because I have a lot of pride in my accomplishments. I was always a top student in school, triple majored in college, and went to the top school for my graduate program. I measure my success on whether or not I'm able to accomplish my goals in life. But it's not a great way to measure success as a caregiver. Seeing myself slow down feels like failure.
So the first step in my journey I'm taking now to not just accept, but embrace my role as a caregiver is to recognize when I'm burned out. The phenomenon known as "caregiver burnout" is common for a lot of family members taking care of their children, spouses, and parents as they go through acute and chronic illnesses. It's marked by a number of symptoms that include mental, emotional, and physical symptoms. A quick Google search will show anyone 20+ symptoms, but a few tend to pop up for me time after time, including:
- Irritability: When the little things begin to bother me, I'm probably burned out.
- Using my phone more frequently: My mind tends to distract itself with my phone, usually because there's some kind of pain I don't want to deal with. Watching my husband deal with a chronic illness and chronic pain is really freaking hard. And so, I notice my mind trying to protect itself by pushing away those thoughts.
- Extreme fatigue no matter how much I rest: I'm tired nowadays a lot between having a toddler and being pregnant, but there's a deeper fatigue when I'm burned out. I have trouble concentrating and my mind and body feel completely used up. It's the kind of fatigue that I know won't go away with a good night's sleep or nap.
- Feeling like I just can't go anymore: This is probably beyond burning out, but if I notice my thoughts start going to places like "I can't keep going" I know I have to stop and examine what's going on. Am I getting the support I need?
Then comes guilt
As someone who's frequently described as an overachiever, I have a lot of guilt when I stop and really experience these symptoms of burn out. I tell myself, "I should be kinder to myself tomorrow," yet the sentiment of "should" is not kind. My guilt builds and builds over time, and no matter how well I acknowledge my burnout symptoms, I have to also deal with the guilt head-on.
Having now been a caregiver for over 8 years, this guilt is the harder mental monster to face. Questions like "Why didn't you just reach out to someone for help?" or "You should have known to take care of yourself" make me feel completely inadequate. Am I the right person to be Keegan's caregiver? Am I doing a good enough job? Am I supporting him in the right ways? These questions spiral to a deep, dark place. After all, who wants to feel like they may be potentially harming their loved one? It's a tough place to go, but one that is important to understand when becoming a caregiver.
I'm new to facing burnout, but I'm not alone
With this new exploration to understand how to embrace my caregiver status, I knew I had to begin with therapy and social support. Luckily I already have a therapist I meet with regularly, but it also meant reaching out to old friends or new friends to ask if they can be support while I go on this journey. There are a lot of skeletons in the closet, that as I greet each one, brings up a lot of pain and mental anguish. Becoming a caregiver is an incredibly selfless act, but we have to be careful to not lose ourselves in the process. I am not Keegan's AS, nor his doctor, or his physical therapist. I have to define and honor the boundaries I'll be setting up for myself in the coming months. My hope is to share with the community what I discover and find to be the most sustainable ways to caregiving to those with AS or chronic illnesses.
If you have any ideas, recommendations, or questions to ponder, please send them my way!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?