Surviving Cancer: The Caregiver Mistakes I Made So You Don’t Have To
Is being a caregiver for a partner really that tough?
Well yes. I think so. It was for me. And something tells me that I’m not the only one. My partner, Sarah, was diagnosed with breast cancer at the age of 27. My experiences caused me to grapple with the unexpected difficulties of caregiving and the mistakes I made. A wise man once said that hindsight is 20/20. Reflecting on my missteps made me realize that there are valuable lessons to be shared to help others navigate the caregiving journey. Join me as I talk about these mistakes and what they taught me!
1. Neglecting your own boundaries and identity
In my previous post, I discussed the tendency to fully disregard one’s own needs while caring for another. Looking back, I am still shocked at how easily and quickly I convinced myself that I was less important than my partner because she was diagnosed with cancer. Her diagnosis was all-consuming.
That is the trap that caregiving lays out for us. I disregarded my personal boundaries and suppressed my emotions in the name of being strong for my partner. Although it is a noble thing to do, completely giving yourself to caregiving is a detriment to both you and your partner. It is essential to prioritize your self-care and assert your own needs as you support your partner.
2. Not taking advantage of the available resources
Caregiving unfortunately takes away the motivation to seek out the many available resources. Amidst the demands of caregiving, I failed to utilize the support and guidance these resources provide.
- Imerman Angels – The goal of Imerman Angels is to connect cancer patients and caregivers with mentors who have walked a similar path. Their overall mission is to make cancer a less isolating experience. They partner caregivers with an experienced mentor to discuss strategies, commiserate about struggles, or just to have someone understand the caregiver experience.
- Cancer and caregiver support groups – There are cancer support groups in nearly every metropolitan area and cancer treatment center. I sadly missed out on the huge benefits of these caregiver support groups. Caregiving can be isolating, but support groups offer a sense of community and belonging. Through support groups, caregivers build relationships with others who are going through similar experiences, reducing feelings of loneliness and providing much-needed emotional support.
- Sharsheret – One resource I did fortunately utilize was Sharsheret. Sharsheret has been the MVP for Sarah and me over the past 2.5 years! They truly exemplify their mission to provide support to the patient, family, and caregivers affected by breast and ovarian cancer. Although they are a Jewish organization, they did not offer the slightest hesitation to provide the same support and resources to us, an interfaith couple. Additionally, their program coordinator was our ever-present lifeline. She was constantly checking in and always validating our feelings, graciously taking some of the caregiving burden off of me. Sarah also applied to Sharsheret’s financial assistance fund. They subsidized part of the cost for the (quite unbelievable and expensive) process of cold capping! I cannot understate how crucial Sharsheret has been for us in our journey!
3. Assuming the challenges end after the big milestones
When Sarah was undergoing chemo, getting to that last treatment session was the main driver pushing us forward. We could not wait to say goodbye to the toxic cocktail that was chemotherapy! For the end of chemo, Sarah’s parents put together a gift for Sarah of kind words and celebrations from the friends and family in our lives. Hearing 20+ people express their excitement for chemo’s finality was a complicated experience for Sarah. “Why is everyone celebrating, but I’m still struggling?”
Cancer treatment is hard, but it also comes with its own aftermath of struggles. I, being the naive 27-year-old that I was, didn’t realize this dilemma at the time. I was as excited as the rest of them after chemo, so Sarah’s continued emotional and physical struggles hit me like a freight train. I had my own cancer journey as a child, and I still feel the effects of that trauma. Therefore, I should have known that cancer is more than just the treatment. It involves all the aftereffects, trauma, and the other complicated feelings that come with cancer.
4. Relying solely on previous relationship dynamics
Perhaps the most impactful mistake I made was assuming that the pre-cancer relationship dynamics we built would remain unchanged. I assumed that the healthy communication, emotional support, and fun energy that we had meticulously formed over many years would stay exactly the same.
One of the least talked about realities of cancer is the effects it has on relationships. I am still wrestling with the idea that cancer introduces a new type of relationship. The partner-partner relationship still exists, but there is now a caregiver-patient relationship as well. To make a new relationship work, you need to construct a new foundation. It is essential to have discussions with your partner to reestablish communication patterns, support structures, and conflict resolution strategies. Finding the right balance between our old dynamic and the new one was a very positive experience for us in the long run.
Cancer is a learning experience for everyone involved. Do not be afraid to revisit these points, and keep adapting throughout your journey. The ultimate goal is for your partner to receive the proper treatment and for you both to come out of this as unscathed as possible. Caregiving is tough. Never stop prioritizing your own well-being and seek out the support you need as you navigate the challenges ahead. No matter how you are doing, you are doing the best you can, and that is enough.
For more caregiving advice, support and personal stories, please visit Cancercaregiverchronicles.com.