Lessons Learned: The Importance of Self-care When Caregiving
Kelly and Justin in January 2008: "A much-needed night out with friends just to be our young selves," says Kelly.
Editor's Note: This is part of our Spotlight on Mental Health series examining critical mental health concerns that affect cancer patients, survivors, caregivers, and providers.
Writer, activist, and former first lady Rosalynn Carter once said, "There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."
At 27 years old and having been married for only 3 months, I felt completely unequipped to take on the title of caregiver. I was just getting used to being a “Mrs.” and signing a new last name. Life was supposed to just be beginning for Justin and me. Instead, it felt like it was being robbed from us when, in 2007, Justin received a diagnosis of terminal brain cancer at the age of 29.
If you think about it, the word cancer is a big enough blow. Add words like inoperable and terminal and who would feel prepared?
Sadly, I was in strong company for not feeling prepared. In CSC’s research, 58% of caregivers who participated in our cancer experience survey reported that they “did not feel prepared to care for patient’s emotional needs,” and 68% “did not feel prepared to handle caregiving stress.” Yet, among caregivers who participated in our survey:
- 98% provided emotional support
- 96% went with their loved one to medical appointments
- 82% helped with decision-making
- 79% coordinated medical care
- 80% provided transportation
- 74% helped manage finances
Merriam-Webster Dictionary defines caregiver as “a person who provides direct care (as for children, elderly people, or the chronically ill).” It’s a heavy word when you think about it. As a caregiver, you could be providing emotional, practical, medical, or financial support — or, more likely, a combination of those. Nowhere in that definition does it say anything about needing to take care of yourself as well.
After returning home from the hospital after Justin’s initial diagnosis, my body retaliated from the emotional toll and physical drain of the experience, and I was in bed for days with a terrible sinus infection. It felt as though I was already failing as a wife after that episode.
Fortunately, Justin and I were quickly introduced to Gilda’s Club Quad Cities (now a network partner of the Cancer Support Community). While Justin spent his Wednesday evenings in a support group with others diagnosed with cancer, I was in a room full of caregivers.
My first impression was that I didn’t fit in. Many of my fellow group participants were in the age range of my parents or grandparents. I quickly learned that this was exactly where I needed to be. These people got me. They understood the pang of guilt you might feel when voicing aloud the stress and anxiety we face as caregivers. They asked how I was doing, and they really wanted to hear the answer — as ugly and terrifying as that answer could be at times. And they took me under their wings, teaching me that accepting help from others was a gift to those who didn’t know what else to do and that I would be no good to Justin in the long run if I didn’t start taking care of myself.
In the beginning, I took on too much by myself. As his wife, I was going to take Justin to all his radiation treatments and oncologist appointments and be there to boost his morale. I was also going to continue to work a full-time job and manage our household and social calendars so we could still feel like the young adults we were.
It took me a while to realize that I wasn’t going to do any of those things well unless I started to prioritize what I still wanted to do myself and where I was willing to accept help (which was offered by many — we were blessed) from others. It was a learning process. I still ended up on an IV drip, during one of Justin’s chemo infusions, when the kind nurses tried to relieve my migraine that was likely triggered by taking on too much by myself. But I did begin to accept that I needed to take care of my own physical, emotional, and spiritual needs to feel at my best when Justin would come to need me most.
Fortunately, there are resources like MyLifeLine, CSC’s free digital support community for people impacted by cancer. The platform lets you create your own private website where you can document your journey and receive social, emotional, and practical support. It also has a Helping Calendar that simplifies the process of requesting help from others for things like rides to appointments, meals, childcare, pet care, and more.
A helping calendar allowed someone like me — who felt an obligation to be in control — to prioritize what I needed to do and where I needed to be in terms of Justin’s care. It also helped me accept help. For instance, it became easier for me to accept offers from our friends and family to take Justin to his radiation appointments; and they could visit with him one-on-one afterward, while I worked. It also gave me the flexibility to make sure I was always available for the oncologist visits where we would receive progress updates.
I did begin to accept that I needed to take care of my own physical, emotional, and spiritual needs to feel at my best when Justin would come to need me most.
Call it what you will — caregiver, carer, caretaker, cosurvivor, or something else. Whatever term you identify with when someone in your life is diagnosed with cancer, just remember how important it is to still take care of your own physical, emotional, and spiritual needs. Support is available.