I began searching for an answer to this question the only way a first-time writer trying to impress her audience knows how – stress eating and Google Scholar. Unfortunately, I found that stress-eating makes me sleepy and research about caregiver health touches on only two points in a caregiver’s journey: during treatment and after the death of their loved one. What about all the caregivers, like me, whose loved ones finished treatment and are living healthy lives? Were we fired as caregivers the day treatment ended? Where’s my severance package? (I’ll take my payments in cheese enchiladas, please). Frustrated, I looked to my husband Justin, a Chronic Myeloid Leukemia survivor two years into molecular remission, for advice:
Me: I want to write about the caregiving journey continuing after treatment, but I’m not sure what to say exactly.
Husband: Don’t you feel like you’re done being a caregiver? I feel like you’re done… I mean I’m in remission and you don’t have to care for me anymore, right?
Me: Right – so do you feel like your cancer journey is over now that you’re in remission?
Justin responded that no, he felt his cancer journey was not over; a simple statement that speaks directly to the dichotomy between a survivor’s cancer journey and their caregiver’s cancer journey. (And that a wife’s intuition is always correct. Always, Justin.) It’s no secret that during treatment caregivers are overloaded and overlooked – we tackle the responsibilities of daily life on top of caring for our loved one, but frequently our physical and emotional needs get overlooked (especially by ourselves). So how does that translate after the end of treatment, and what do we do about it?
Two healthy, happy years into remission I’ve found that the mindset of being a caregiver – both the good and bad aspects – has not changed. Just like throughout treatment, I appreciate on a deeper level the time Justin and I have been given together, but I also find myself battling unwanted negative emotions. I still feel like my “job” (on top of my full-time job) is to minimize my husband’s stress through managing all of our shared responsibilities regardless of my own anxiety level. If he is stressed about home/relationship/money issues, it feels like a reflection of my own shortcomings in managing these responsibilities. I then solidify this self-inflicted pressure with statements like, “he just has so much on his plate right now,” or “he deserves to simply enjoy life after cancer.” Case in point – it was hard for me to write those two quotes without qualifying them (he DOES have SO much on his plate!! He DOES deserve to enjoy life!!)
Sometimes it feels like there’s a small, nagging voice dwelling in my mind, keep me from truly enjoying the present and being completely carefree as I look towards the future. Ten out of ten times when Justin says “I don’t feel well,” he’s overly stressed from balancing work and school and just needs a weekend of rest; but every single time I worry that his cancer has returned. I’ll tell him to go see a doctor, I’ll take his temperature, I’ll treat him like a delicate, whiny, Faberge egg until he feels better. But my own health? It took me a year and a half to get the pain in my side checked, and then I put off urgent surgery 3 weeks until it was “better timing”. Not smart, definitely not safe, but also very common caregiver behaviour.
So then, only one question remains – after treatment what should caregivers do to emphasize the positive and eliminate the negative? I have 4 suggestions that are working for me:
- Give Yourself Permission – To enjoy life! To ask for what you need! To make alone time for yourself! To vent about your crappy day to a friend! To leave the dirty laundry in the hamper! To do something that deserves multiple exclamation points!! Anything at all that allows you to enjoy life and feel whole again. Caregivers deserve to enjoy life after cancer just as much as survivors, so give yourself that green light to make the most out of every day.
- Communicate –With your loved ones, including yourself. A cancer journey can easily break down lines of communication and destroy relationships (whether it’s with a partner or other loved ones). My advice is to practice communicating – the ways in which you send and receive information – every single day. Practicing daily with small conversations will make communication easier when larger/heavier conversations come up. As for communicating with yourself I’m not advocating talking to yourself in line at Taco Bell, but find some positive affirmations and repeat them in the mirror. Focus on rewiring intrusive, negative thoughts: “I am excited for this new day,” “I look freely into the future,” “I am strong, capable, and happy to accept the future,” “buffalo wings are delicious and it is okay that I eat them every day.” (Maybe not the last one.)
- Stay Healthy – Poor health patterns are a recipe for disaster; how tragic it would be to exit your loved one’s cancer treatment only to greet a myriad of your own ailments! Staying healthy means eating sensibly, moving throughout the day, and keeping doctor’s appointments.
- Give Back –Since our time in treatment, I’ve enjoyed speaking at conferences about being a young adult caregiver, meeting other survivors and caregivers, and being more engaged with others in general. It’s so easy to start giving back; you can write a blog, volunteer at a hospital, ask your friends to do a fun run/walk with you, or join a peer support group to connect with others going through the same thing. There are limitless possibilities in the world of giving to other survivors and caregivers.
These four points seem easy but it can be challenging to integrate them into an already busy schedule. So start small – one buffalo wing affirmation a day before bedtime, or a walk around the block when you get home from work – then build a routine that works for you. Whatever you decide to do, do it deliberately; focus on how wonderful it feels to take care of yourself, then make that wonderful feeling a permanent fixture in your life.
I wish you all health, happiness, and a bright future with much laughter.
Katie is a licensed social worker, oncology navigator, and young adult caregiver. Following her husband’s cancer treatment for Chronic Myeloid Leukemia, Katie became an advocate for caregivers; speaking, writing, and volunteering her time in an effort to increase awareness of caregiver challenges. Most recently, after working nationally and internationally in a variety of different areas, Katie changed career paths entirely and became an oncology survivorship navigator in the Dallas/Fort Worth area.