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E: Caregiver - Guilt of having a life outside of caregiving


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Emotional: Caregiver - Loss of Self

Embracing My New Caregiver Identity

Becoming a caregiver for my husband with brain cancer was a transformative experience that I never imagined I would have to go through. It challenged me emotionally, physically, and mentally, pushing me to discover strengths I never knew I had. Embracing this new caregiver identity becomes not just a necessity, but a journey of self-discovery and growth.  Let’s be honest with each other here… caregiving is not something you want or wish to embrace.  However, at the end of the day, you do what is necessary, for however long it takes, to be there for the person who needs you the most.

My journey as a caregiver began with a mix of fear, uncertainty, and determination. However, through the trials and tribulations of navigating the complexities of brain cancer, I found ways to cope and thrive in my role.

Educating Myself: Knowledge is power. I dove straight into learning everything I could about Glioblastoma (his type of cancer), its treatments, and how I could best support my husband. Understanding the disease and its complications helped me make informed decisions and provided a sense of control.  I refrained from having him search for information, as I didn’t want him to come across statistics, stigmas, and negative terminology linked to his diagnosis.   

Building a Support Network: I realized early on that I couldn’t do it alone. I relied heavily on family, friends, and support groups for guidance and emotional support. Sharing experiences with others going through similar struggles helped alleviate feelings of isolation and provided a sense of solidarity.  It was really hard for me to connect with my close circle of friends hearing what seemed like their miniscule daily struggles.  Although the time spent with my friends was extremely valuable in providing a sense of normalcy and escapism, I still found solace in talking to others who specifically understood what I was going through.  Our close support group really stepped up in the beginning stages of diagnosis because I was scared to go to work in the instance my husband had another seizure.  Either a family member or close friend was always with him, when I couldn’t be until we were comfortable with him being alone. 

Prioritizing Self-Care: It was easy for me to neglect my own needs when caring for my husband.  How can you even think of yourself when the one you love most is fighting for their life? I wish I had realized it sooner, but I finally learned that taking care of myself allowed me to be a better caregiver in return.  I made it a priority to carve out time for activities that rejuvenated me, whether it was exercising, spending time with friends, or indulging in hobbies and things I enjoyed before the diagnosis.

Embracing Being Flexible and Adaptable: Flexibility is key when caring for someone with brain cancer, as the journey can be unpredictable. I had to learn and to adapt to changing circumstances, adjust my expectations, and find creative solutions to challenges as they arose.  Lots of things changed every single day and we had many questions.  Would we be able to have kids?  Would he ever be able to work again?  Will he lose his memory?  Some of these questions came with scary answers, but we were in it, together.

Not Everything Has to be About Cancer: While supporting your loved one with cancer is important, make sure to also find time for activities you enjoy outside the cancer journey. I remember we would go out to dinner and the topic would come up to our server how my husband had brain cancer and it would just consume our entire dinner.  I eventually voiced to my spouse that we needed to still spend quality time together where cancer was not the main topic of every conversation. It’s all about balance!

Embracing my role as a caregiver during our journey through brain cancer was tough, but it led to incredible growth, resilience, and love and I learned so much along the way.  Though the road ahead may seem daunting, it can be approached with newfound strength and purpose, knowing you are making a meaningful difference in the life of someone you love most.

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