Some Advice for Cancer Caregivers During National Caregiver Month

It is acknowledged that cancer changes people, but it also changes the people who love them. As the mother of a daughter diagnosed with breast cancer at 27, there wasn’t a lot out there that spoke to my experience: the mother of a twenty-something facing a life-altering illness. Since November is National Caregivers Month, I thought I would take this opportunity to offer a few words of advice to caregivers in similar situations.

It's Not Your Cancer

As much as I wanted to be the team captain during my daughter’s cancer experience she was an adult and I had to keep my focus on the fact that the C for captain was on her jersey and the A for assistant was on mine. Had she been younger I would have been able to take the lead on decision making, but she had been out on her own for nine years and was used to making choices that worked for her.

I am very grateful that she was always open to discussing what was going on for her but I had to consistently check my intent before I opened my mouth to offer any suggestions and I think doing that made her comfortable to include me in everything.

Be Prepared to Feel Like a Target is on Your Back

There will be times when the experience overwhelms your adult child and they need to lash out, and if you are the one closest to them they may lash out at you. Unless there is something they are trying to address that you have done that is directly related to their anger and frustration, the likelihood is that what they are actually expressing is feelings about how cancer has impacted their lives.

When they see their friends moving on with life while theirs has been put on hold, or when they lose their independence, or when they look at a face they don’t recognize…all that emotion has to go somewhere. My mantra when that was happening was “This is not about you”, and that would allow me to feel compassion for my child when she needed it most.

Find Your Someone

You will also need some care while you are supporting your child and who you choose as the people in your corner is important. There may be people that you were sure could be there for you who simply can’t because they can’t manage their own emotions about your child’s cancer. The last thing you need when you are at the end of your rope is someone who ends up flipping the switch and you find yourself supporting them.

Ask the person at the top of your list to be completely honest about their capacity and reassure them that if they are not sure they can manage it you’ll understand and then move down the list until you find someone who can. Even if it is just one person that you can text or call who will just listen, they will be an island in stormy sea that will help keep you safe.

Find Your Something

Everyone’s experience is different and there is no rulebook that offers the right way to manage the deep emotions that come from watching your child go through the physical and emotional trials of a cancer diagnosis and treatment. It’s important for you to find the outlet that works for you. If you have been doing something that lifts your spirits or reduces your stress before becoming a caregiver do your best to keep doing it, even at a reduced level.

If you usually go to a gym but can’t because you need to be present with your loved one, there are online workouts that you can do in your living room. Even if it’s only ten minutes of jumping jacks or marching in place it will help. If being outside brings you peace set an alarm and go stand in the driveway for ten minutes. If you like to dance plug in some headphones and rock it out. If you need to scream, grab a pillow and let it rip. In my case, it was a bit of all of the above but the thing that helped most was…

Write It Down

Many people suggested I journal and I thought “Nope, that’s not me”. Then I started writing about the experience as a way to respond to questions from friends and family and I was amazed at how helpful it was. I don’t have any idea why it works, but it does. I would find things that flowed through my fingers onto the screen that I didn’t even know were in my head. There were some thoughts that I didn’t share publicly but by writing them down I was able to, in a sense, share them with myself and give myself some grace for feeling them. It was a way for me to scream into the void, to share funny moments, to educate people about what cancer treatment is actually like.

It also allowed me to prepare other people in my life for the emotional impact both of us were experiencing and I think it gave me a much gentler re-entry into my real world when the time came.

And boy, did I need it to be gentle. Happy National Caregivers Month to all.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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