Balance While Caregiving
This piece was written for and originally posted on The Upside to Aging
When asked to write about my caregiver journey my instinct is to talk about how I got burnt out, learned to take care of myself, found out it was ALS, and continued to keep my head above water.
The cliff’s notes…
My mom died of cancer ten years ago after a year long battle (Dec 3, 2008 to Dec 4, 2009).
My dad got sick 7 years ago (went in to the hospital on Dec 3rd – creepy no?)
Only 3 years ago we found out it was ALS (a death sentence).
The care is split between myself as primary caregiver, my 3 sisters, and government services (every morning and 2 evenings a week). This balance has taken years to achieve and it still sucks.
I’ll tell a different kind of story this time around because that version doesn’t draw attention to some key learnings of this caregiver journey… here’s a list because it’s easier to read with caregiver brain:
YOUR SQUAD CHANGES
You can bet your ass that I am not the same person I was when this all started. So, of course, the people I relate to and spend time with are different too. My threshold for bull shit is much lower and I won’t settle for a half-assed friendship. Either we both show up for each other, or I want nothing to do with you. I would say this applies to romantic relationships as well, but I haven’t really dated in like 6 years. There’s another change!!
YOUR JOB AFFECTS YOU
The same way your personal life affects your performance at the office (caregiver exhaustion anyone?), how you feel about your job affects your day to day morale which affects your energy levels and mental health. Since caregiving already drains both of those things, I’m lucky to have found a job that doesn’t.
THERAPY IS GOLDEN
In December 2018, I was at my wits end. I was continuing to do all the “right things” and it just wasn’t enough. I felt irritable all the time. Sad. Upset. Tired. *Depressed*. I went on the hunt for a therapist and in January began seeing a woman referred by a good friend of mine. Not gonna lie – she is expensive and that stresses me out… but, she’s helped me immensely in learning to set boundaries, handle difficult conversations and look at my life in a different perspective.
SOCIAL MEDIA AND CAREGIVING ARE A VITAL COMBINATION
I wish I had found this online community back at the beginning. Connecting with others like me has been imperative in feeling “normal” and less isolated. Though I still feel it in real life, finding it online has helped so much. Plus, I find that helping others is a great way to feel better and I’ve been able to do that too.
KEEP MOVING FORWARD
You will continue to learn more about yourself, your caree and the people around you. Take what you learn and use it to keep yourself moving forward. Caregiver burnout is real. Depression is real. But so is love, compassion, strength and believing that you will be “ok” one day. I do believe that when this is all said and done, that I will come out the other side a new (again!) person. Yes, it will be horrible and sad, but it will also be free-ing in a sense and the world will be my oyster. I can, in theory, do anything and everything that I’ve been holding back on to focus on being a caregiver. Time will tell..