They shoot us into the past.
They beg us to play the ‘what if’ and ‘if only’ game.
They land us on unsteady ground.
I spent the weekend celebrating my Dad’s 75th birthday and visiting my grandma who has been blessed with 96 years of birthdays. I anticipated a weekend filled with stories, laughter and delicious meals around the table. And it delivered. What I didn’t expect was a weekend full of triggers that transported me to the intimate days of cancer caregiving.
If you’re not sure what I mean by “triggers”, it’s when something sets off a memory or flashback and transports us back to a specific event. They are personal, they are different for each of us and they cause an immediate physical and emotional reaction within.
Cancer caregivers experience a set of triggers tied to the disease in addition to the emotional triggers we experience just by being humans.
Beam me up, Scotty!
Jeff and I used to wish we had the ability to transport ourselves like Captain Kirt and the crew of the USS Enterprise.
If we wanted to explore the streets of Paris or London for breakfast, we could be there in an instant. Or, visit a favorite restaurant halfway across the country – done! After a 6-hour chemo infusion, we could, in the blink of an eye, find ourselves home and resting.
When a trigger shoots me into the past, I find myself wanting to yell “Beam me up, Scotty!” with the hope of landing calmly in the present moment.
I haven’t figured out how to make the Star Trek transport happen…yet. Although I have found a few ways to help get me back into the present in one piece.
The Big One
When caregiving for a spouse with cancer, the biggest trigger of all is when someone we know is diagnosed with cancer. Those 3 little words have the power to transport us back to our own situation when our family heard the same words. While we may respond with outward support for their path ahead – inside, we vividly recall the overwhelm, confusion, determination, and anger.
We remember the fear. Fear that our loved one has just received a death sentence and fear that all of the dreams we have created together will disappear.
Fear that we will lose the one person in our life that means the most to us.
It all started…
This weekend, the first trigger hit when I walked into the assisted living facility where my grandma lives.
I entered the automatic doors and walked directly into the wave.
My eyes filled with tears, my breath shallow. Walkers, wheelchairs, our cherished family members taking meds in paper cups, the signage reminding us of safety first and living spaces surrounded by medical staff. It vividly took me to the places Jeff and I stayed during his treatment, including hospice house where he died.
The second trigger hit while helping my grandma into the car.
Anyone who has learned from a physical or occupational therapist, the proper way to guide a safe transition from a walker or wheelchair into a car, a chair, the shower, the toilet knows what I mean.
Seeing my grandma square herself to the passenger side of the car, reach down to lock the wheelchair and use every bit of strength she had to get into the car safely…I would have thought it was Jeff. It looked exactly the same.
They way they both moved. Slowly, purposefully, the way it exhausted.
It brought me back to the countless of times we went through the same sequence. The muscle memory of locking and unlocking the brakes, removing the foot rests, folding the chair and lifting it into the trunk of the car came back without hesitation. I immediately jumped into ‘caregiving mode’, advocating for her safety and making sure she was comfortable.
As I closed the trunk, I stood there and took a deep breath to keep myself in check. More tears.
I didn’t realize that in between reliving the past and operating in the present, I had been holding my breath the entire time.
Triggers aren’t always visual – they can be audible too.
And they often happen at every step along the path of cancer caregiving.
When Jeff was going through chemotherapy the second time around, the beeping of the IV machine was an audible trigger.
It was a front and center, precisely-timed reminder that we weren’t there watching movies together, napping, playing cards or reading next to each other. We were lying together in a hospital bed with the hope of giving him the best treatment we could to slow down the disease.
When the disease progressed and his mobility declined, when he moved from the cane to crutches and then the walker to the wheelchair, I was instantly transported back to the days of walking miles together with the dogs, hiking and exploring new cities, kayaking and feeding our joint love of adventure.
It was during this trigger where I was tossed into the vortex of ‘what if’ and ‘if only’.
If only we would have made one more trip together, one more Sunday drive, one more anything.
Had I done everything I could to give him the love, the care, and advocacy he deserved? What if…I could have, should have, would have…the kinds of questions that are normal to ask, yet, have the ability to break down our confidence and inner trust if we dwell too much.
Cancer caregivers live sandwiched between purposefully living in the present and accepting what is directly in front of us – all while we manage the triggers which remind us of how drastically life has changed as a result of a diagnosis.
Landing in the Present
I made it through the weekend with a lot of laughs and tears.
My grandma is certain she’s going on a “long journey” soon (her words) and was quite confident that this was the last time I would see her. *sigh*
And so, much of our time together was spent storytelling, remembering how she and my grandpa met, how they got married without her family’s approval, how the love of music and singing graced their home, how she worked since she was 14 years old and how her persistence, her willingness to ask questions and her outspoken, dare I say, rebel attitude has filled her life with a beautiful family, joy, love and kind friends. I hope we are all so blessed.
Three Ways to Get Through the Triggers
(until Scotty can beam us up)
1. Be aware that it’s happening.
When the trigger hits, realize that it’s hitting.
Just by being aware helps us to understand the emotion and cut ourselves some much-needed slack. Then, dive one step deeper (if possible) to identify the specific feeling or need within you that is being triggered.
In my case, being immersed in the medical environment and seeing my grandma sitting in her wheelchair waiting for help transported me back to a scary time with Jeff, filled with unknown circumstances.
The connection was there – I needed to put together the pieces to understand.
My desire to step in was my response to seek comfort and security – a way to control an uncontrollable situation. Jeff’s death was completely out of my control. I couldn’t stop it from happening. He loved me and I loved him. We gave it all we had and did the best we could.
I had to learn from the past to make my way through the present.
2. Regulate through Boundaries.
I continue to work on this one. When I execute well, setting boundaries helps me to have a better sense of myself, my needs and what’s truly important to me.
As caregivers, the answers we need are within.
I had to learn how to slow my roll, ramp it down and pause in order to listen and receive. I am far more capable of holding myself accountable when I can regulate my reactions.
Several years ago while working in San Francisco, my colleagues and I used to joke about checking “it” at the door when we arrived at work. “It” was our individual baggage. Checking “it” at the door was a way to contain the baggage we brought to work as best as we could.
The goal wasn’t to avoid it, it was to create a boundary that allowed us to better manage our feelings and behavior as we faced the day’s challenges.
When I execute this not so well, I find myself redirecting my emotions onto others (unfair) and that can lead to rigid thinking (unproductive). Which leads us to #3.
3. Take ownership. And Breathe.
All of these triggers over the weekend had me riding an emotional rollercoaster. As a result, I felt more sensitive.
Instead of judging myself for “not being strong enough” or being “too sensitive”, I acknowledged my feelings for what they were.
Watching my grandma maneuver her physical limitations triggered for me Jeff’s decline in health.
Completely normal and understandable.
Hearing her talk about her long journey ahead and knowing I couldn’t stop time made me sad.
And so, I took ownership. I recognized the situation for what it was and I leaned into it. It wasn’t easy.
I chose to forget perfection (because it doesn’t exist), breathe in the sadness and the joy of it all. And I let compassion take center stage.