November is set aside to recognize caregivers, but the truth is: most of us are caregivers long before we ever claim the word. We care for children, aging parents, our friends, our partners—and sometimes, for a young adult navigating cancer.

I wanted to share some thoughts not just about being Cassie’s primary caregiver, but about trying to care for a whole family while staying connected to Chris and keeping our home from tipping over.

The push/pull of caregiving for a young adult cancer patient is complicated — at best, it’s intimate and loving; at its worst, fragile and hurtful. Cassie needed me when she needed me and pushed me away when she was feeling well enough to step back into the life she was creating for herself. The hardest part was recognizing when her needs changed. I didn’t always get it right. Thankfully, Chris and the kids often sensed the shift before I did.

The cancer caregiver role is nuanced and there is support and opportunities both in-person or virtual. I personally did not take part in any of that (I probably should have). I’ll add links below to those.

What I wanted to touch on was a piece of caregiving outside of the cancer patient. When Cassie was diagnosed, Ashley was nearing the end of her freshman year at Purdue and Ethan was in 7th grade. Both of them needed their parents in very different ways. 

For Chris and I…Oh the questions; Oh the worries…

How do we tell them? Do we let Cassie tell them? How much do we tell them? How much do we know? Do we have good health insurance? How are we going to financially survive this? Ashley is 6 hours away and has exams. Ethan is so young. This can’t be cancer—its just a benign tumor…right? We are scared…we don’t want to scare them. We want to be honest without interjecting our worst fears. The very moment the word cancer was whispered our family was forever changed. We were the grown-ups; we had to get it together for them when our minds were reeling. There was a strong desire to keep our activities and schedules “normal” —nothing was normal anymore though.

Here’s what I learned~

Kids are smart, they see what’s not normal and in the absence of some truth, they’ll make up their own truth (often way scarier). They know the energy of the home is shifted, they hear the hushed phone calls, they sense your stress. At our house the responses were to avoid the emotions, pack them in a box to deal with later or wear them on your sleeve and hope for the best. We all used both of those strategies at different times throughout the 4 years of cancer and the years of grief following. 

Practically what did we do?

My Middle Schooler~

Almost immediately, I went to the school and talked to Ethan’s advisor. I let them know what was different in our house and that I wanted to know if there were any changes in his behavior or grades. I wasn’t expecting him to become a troublemaker or start failing classes but I wasn’t exactly paying attention either. Our neighborhood was a wonderful place for Ethan to grow up in, lots of boys his age who loved to be outside playing every sport and running around in the woods. The village truly was raising our child. Ethan was young and cancer is scary. He was aware of what was happening but we didn’t go into great detail. He was always in the waiting room for every surgery and visited the hospital at times but he preferred to wait until she came home. We never pushed and let him lead. Middle school boys don’t talk much but my son was (is) a talker. During cancer, he remained a great conversationalist but didn’t say much about Cassie’s cancer. Ethan was very close to Cassie, they spent hours watching inappropriate tv shows and laughing together. I know that was comforting for both of them. When it came time for hospice, it was very important to Cassie that she talked to Ethan. I don’t know what those conversations were but she was his caregiver then. Essentially with Ethan, we followed his cues. 

My College Kid~

Ashley knew everything right away, she likely shared in all our fears and googled extensively. I think we told Ashley and Cassie about the tumor in successive phone calls. Immediately she wanted to come home from college and stay home. Ashley is a homebody (like her mom)—when cancer found its way into our lives, she knew where she wanted to be. Cassie let her know she was leaving for MSU after graduation “so don’t come home for me”. Ashley enrolled at Oakland University that fall and found her place there. Ashley was also dating her now husband Jeff when Cassie was diagnosed. Having someone to support you, make you laugh and hold you when you cry is pretty special. Cassie loved Jeff too —he made her laugh and annoyed her all in the same visit. She used to say “I need to find me a Jeff one day!” We had a pretty open dialog with Ashley, no different than Chris and I had with each other. The complicated family dynamic was when Cassie was in the hospital and Ashley was in charge of Ethan. Although we greatly appreciated her caregiving skills, that was not the case for Ethan— at all! Where the difficult part came was when I was fully present but not the most structured parent. There was a triangle of parenting that was difficult for everyone. Ashley experienced the push/pull of caregiving from a different perspective. I needed her to parent when I couldn’t and step back when I *thought* I could. Ethan was stuck in the middle. 

I don’t know if this is caregiver advice, but I do know this—Armor up. Caregiving is a labor of love.

Let me end with a story.

In July 2008 Cassie had a hip replacement to remove metastatic cancer, her recovery was much longer and more painful than we anticipated. That surgery was early in her cancer story so we were all still shell shocked. Cassie and Ethan switched bedrooms so she could sleep in a twin bed —it was easier for her to get out of. I remember all of us sitting in her *new* room talking and laughing. What I didn’t realize was it was actually a staged intervention of the helicopter mom (me). Apparently, I was smothering everyone and they “gently” let me know. 

I was not receptive to this observation and spoke my peace —a nice way of saying, I overreacted, stormed out of the room and hid in my closet. Eventually I text Chris “Come in the closet QUIETLY”. He tiptoed in, sat in the dark with me, and held me while I ugly-cried—until we both started laughing at how ridiculous it all was.

Cancer is hard.

Caregiving is hard.

Sometimes you need to hide in the closet.

Peace, Love and Kayak

Karen

Support links for Caregivers: The Cancer Support Community is a national org that has a wealth of support. In the Metro Detroit area Gilda’s Club is the affiliate location. 

The CHSCF Young Adult Partner’s page has many orgs that have support for the cancer patient as their primary focus and caregiver support as an additive way to support the family.