“It will never be the way it was again. You will find a new normal.”

The first time we met Duncan’s surgeon, he said, “It will never be the way it was again. You will find a new normal.” While he was specifically referring to Duncan’s digestion and the long-term impacts chemo, radiation, and surgery would have, his words ring true in so many other ways.

Our world was turned upside down the day we heard the words “large, cancerous mass,” and we remained in a topsy turvy reality for more than a year. In the initial days and weeks following his diagnosis, we frequently heard from friends and family near and far. We received encouraging messages, offers of help, meals, and gifts to help us as we started the treatment journey. 

I started a Caring Bridge page providing regular updates on Duncan’s treatment and asking for help with meals and transportation in the weeks following each of his surgeries. As the months passed, we noticed there were some people we had expected to hear from but hadn’t, others we hadn't heard from in a while, and several who continued to check in regularly. Over time, the number of people who had stopped checking or had never done so grew, while others remained steadfast supporters. I felt a range of emotions about those who showed up and those who didn’t, but in the end I realized those who stuck around were our true supporters. They are our people, and they have been some of the biggest blessings to come from this very difficult experience.  

At the beginning of this journey, a wise friend told me, “Most people won't be able to handle your reality.” What I didn’t realize then but quickly learned is as much as some people might want to help or be supportive, the day to day reality of our experience and the realization that this terrifying thing could happen to them without warning or reason might have been too much for some. The thing is, the people to whom the serious illness or life-altering event is happening can’t choose to disengage no matter how hard or uncomfortable it is for them.

I also think it’s natural to assume when treatment ends, surgery is done, or someone comes home from a hospitalization that things are “getting back to normal.” The truth of my experience is that the quiet times are often some of the hardest for a caregiver. 

I’ve frequently heard caregiving compared to running a marathon. Anyone who knows me well knows I would never choose to run unless chased, but I very much relate to the part of this analogy in which you sometimes see runners collapse as soon as they cross the finish line. The thing is, there is often no “finish line” in caregiving. While Duncan’s needs and my other responsibilities ebbed and flowed, they did not come to a stop just because a treatment phase or medical intervention had been completed. If anything, my responsibilities often increased as I helped with physical, emotional, and medical needs that healthcare professionals had been supporting during his treatments and hospitalizations. Additionally, my body often kept me from fully feeling and experiencing everything I was dealing with at the time because I was functioning in survival mode in order to take care of everyone else’s needs. But when the emergency phase was over and things got a little quieter, all of a sudden my body could start feeling everything it hadn’t been.  After being in survival mode for almost a year and a half, this was an unanticipated, exhausting, and often lonely experience. Over time, I have learned the importance of resting when I can and identifying who I can be truly open with when it comes to my experience… the good, the bad, and the ugly.

Finally, I’ve learned that there is a place for grief in caregiving. At different points in my experience, I have grieved for the life we had before cancer and the things about that life that will never be the same. I have also grieved the relationships that were lost or changed because of it. At the same time, I have celebrated the big and small milestones along our way, and am working on accepting what is rather than yearning for what could have been. It’s a work in progress and that's ok. 

I hope by sharing these aspects of my caregiving experience that are not often talked about, I can help other caregivers feel validated and less alone in their experience, and help supporters better understand the complexities that caregiving can bring. Sharing this publicly feels vulnerable, but I hope that vulnerability helps make a potentially very isolating experience less so for others walking this path. It's a path many of us will find ourselves on at some point in our lives. 

Ideas to consider:

• In the article, “Care for the Caregivers,” an analogy is shared in which supporters are compared to firefighters and carpenters. It says, “Firefighters arrive when a house is burning down; carpenters stick around to help the homeowners rebuild. Be a carpenter.” The takeaway is, many people will show up at the beginning, but it's those that keep showing up that are especially helpful as the family rebuilds and recovers.

• There can be several reasons updates become less frequent. The family may feel there’s “nothing new to report,” or some details may be too unpleasant or sensitive for them to share comfortably with a wider audience. Consider checking in with the caregiver regularly so they can privately share what's been happening if they'd like. 

• Mark scan time frames on your calendar and check in ahead of them. The weeks leading into a scan can be a time of increased anxiety. Offer to visit or do something together to provide a temporary distraction. You might ask the caregiver how you can be most supportive on the scan or results day.

• Sometimes caregivers may find there are activities they liked to do with their loved one that are not currently possible for them to do together. Consider offering to accompany the caregiver instead so they still have the opportunity to do the thing they enjoyed doing before circumstances changed.

• Ask how the caregiver is doing. People often ask how the loved one is doing, but not the caregiver. Doing so shows you recognize how much their life has also been impacted.

• Avoid bright-siding and problem-solving. Caregivers frequently want to feel heard, validated, and understood.  Statements like, “You should…,” “At least…,” or “Why don’t you…” can feel dismissive and cause a caregiver to feel they can’t be honest or truthful about their experience and perspective.

• Everyone’s experience is unique. Rather than assuming you know exactly what someone is experiencing, ask them to share as much of their experience as they are comfortable sharing with you, and be a supportive listener.