Caregivers – someone should write a song for them

• April 28, 2021
• Program Updates

By Amy G

Caregivers have a hard job. Some days I think cancer treatment is tougher for the caregiver than the cancer patient. The patient knows the kind of day they’re having – how they feel, what they‘re thinking, if their symptoms are manageable. Unfortunately, caregivers can’t read minds, but they can worry. For me, cancer treatment feels like a roller coaster of emotional, physical and mental highs and lows. And for my mom, my awesome caregiver, she tries her best to catch up with my mood swings in the support coaster as we ride the highs and lows of cancer treatment. 

My name is Amy and I started riding the ovarian cancer coaster at 32 years old. I’m lucky to have my mom beside me through my cancer treatment. She obviously knows me very well. She’s finished my sentences on occasion (damn brain fog), but she still hasn’t mastered mind reading. My mood changes quickly. One day I’ll be on the uphill gathering strength, hope and resilience, laughing and joking. Another day the idea of gathering strength and hope in the face of new challenges and overwhelming uncertainty seems … well, hopeless. Someone will say something, do something, or look at you too long. I’ll be triggered and down I go free-falling into a low mood. If I had hair, it’d be blown straight back.

I feel like a bundle of raw nerves so everything seems like a trigger. I try to manage, and I do most days, but we all have our thresholds. For example, I become self conscious of my barely there eyebrows, my puffy face, my slow word recall, my memory loss – who is this new Amy? I freeze in fear when I hear someone talk about the loss of a loved one. I’ll get upset when a conversation with someone turns immediately to my cancer diagnosis, because I’m so much more than this disease. I get angry when I have to ask for help, because old Amy could have gotten it done. I hate that stairs are exhausting. I get sad that conversations with some friends have dwindled. I get irritated when people complain about getting older or have to celebrate a birthday (this is where I’d insert an eye roll). And then, I’ll cry, because all those triggers make life seem too heavy and hard. It’s a lot. And if it’s a lot for me, I know it’s a lot for my mom too, because she doesn’t always see the triggers. She only sees her daughter go from high to low. She watches a positive, happy person vanish. She worries and feels helpless. She wishes we could trade places. We both hold on and ride it out.

My mom and I have a really great relationship, but we have our days. Cancer treatment is hard and scary. On rare occasions, I’ve yelled at her, and she’ll ask, “Amy, why are you yelling at me?”. I don’t always immediately have an answer. I know that I’m not yelling directly at her. I do know that I’ve reached a point where I have to let all that emotion explode out of me. The yelling temporarily makes me feel better. And then worse, because yelling at your mom isn’t fair. Vulnerability is hard. After some time has passed, I gather the courage to explain myself. It usually involves a combination of these phrases, “Mom, I’m overwhelmed, I’m so tired…of everything, I need help, I don’t know what to do, I’m scared of dying”.  I follow that up with an apology and we agree that life can be really unfair. I envy my mom’s patience and I’m grateful for the sacrifices she’s made to be with me. She left her job, my dad, her friends and her home to come live with me in Okotoks. I would throw her a party every day to celebrate her, for the rest of my life, but I’m sure we’d both tire of cake. 

Caregivers have such a hard job. I wish they got more attention. They don’t get the thanks they deserve, but how do you thank someone that gives so much. Maybe someone should write a love song about caregivers, because it’s an incredible, pure love to look after someone fighting a life threatening disease. You can’t fight alone.

Mama bear, if you’re reading this, I love you to the moon and back.