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The Ugly Side of Caregiving

June 17, 2018

 

When my mom told us she was diagnosed with stage 4 pancreatic cancer back in 2012 my heart sank - I felt like someone punched me in the stomach. I knew in that instant I was going to be by her side throughout her treatment journey. I knew it in my soul. Almost as if I was fulfilling some kind of bigger purpose. 

 

To all of you caregivers out there, you know what I’m talking about. 

 

A few years later, my sister's friend Aimee was diagnosed with breast cancer. Somehow, I felt knit with her--and I knew I would be a part of her treatment journey as well.  With the experience I gained navigating the oncology system for my mom (which is overwhelming, for sure,) I knew I could help Aimee and her husband in a big way. A different way then I did with my mom, but still an important one. 

 

To be clear, I do not jump at the chance to help every person who is diagnosed with cancer, but with my mom and Aimee it felt “right” there was no question about it.  I just jumped in.

 

Yesterday was the year anniversary of my dear friend Aimee’s final breath. I’ve found myself reflecting on my own life, the purpose of it and how death and life are so intertwined… in a scary, beautiful, strange, confusing, powerful, HOLY way.  

 

But, there is an ugly side to caregiving.  

 

The first few weeks I had so much energy and joy to help my mom, but as the weeks went on I was spread so THIN! Everything seemed impossible and EVERYONE, was getting on my last nerve! My mom was acting out as well. We need to debunk the myth that when people get sick, everybody comes together in a wonderful rainbow of joy and sunshine to help! We also need to debunk the myth that the sick person is able to lie in bed and smile at all the friends and family that come to visit or help. 

 

And it's okay.

 

Some of the hardest times were during the end and it is messy, ugly, tiring, and it pushes you and everyone around you to a place of isolation at times.   

 

Which brings me to this very specific point: There is more than one way to be a caregiver and we need ALL of you people! I helped my mom and Aimee in a more “traditional” caregiving way but I saw my sisters, brother, friends, and extended family  fill in the gaps in ways I absolutely could not. Being a still, calm presence, sending notes, bringing flowers…there is even a strength in caregiving to the ones who know they will not visit, or make a meal, or send flowers, but instead send up prayers and hold a loving place for their dear friend that they may never see again. These are just a few of the ways I saw people fill in the gaps, but there are many more and they are all important and unmeasureable. 

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