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Illustration by Drew Shannon
Sometimes it feels like the world understands what I am going through and sometimes I feel very alone.
I take care of my mom in my home. Caregiving has been one of the most challenging roles I have undertaken in my life. Equally, it is the most fulfilling. I am “all in.”
I entered in this journey quite blindly. My goal was to assist my mom to age at home… to walk the aging journey with her with joy and thanksgiving, to give back for all the precious moments and memories she gave me throughout my life.
It has been a journey. Navigating the “system” of care can be overwhelming. Spending the day floundering, falling, getting up and starting over the next day has become a familiar routine.
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I entered this role without experience. Our mothers only age once. Unlike raising a child who grows and learns and develops new skills day by day, our mothers decline physically and cognitively, lose independence, experience new pain, changes in sleeping patterns and countless other lifestyle changes and losses. My mission becomes finding the resources that can help. Each appointment results in a domino of appointments either diagnostic or otherwise.
And then there is the trick of convincing my mom that these new accessibility options, pain control measures or lifestyle changes are good ideas. This is ongoing, always changing and requires time and energy to get it right. I focus on doing this so my mom lives fully, comfortably and with dignity. All of this is new, all of this is a once-in-a-lifetime experience.
There is loss, there is grief, there is loneliness, there is resentment and a slew of other emotions I had never felt before. There are secondary losses as well, like not being able to work or take on new projects or travel. Or even having the energy to go out with friends. There is also the anticipatory grief that sits like a stone in my stomach. The list goes on, but this is not my focus today.
Today there is joy. The trick is staying in the joy realm.
I knew that a little connection was what I needed so I joined a peer support group for caregivers but with some trepidation, as it added more to my already overflowing calendar.
Although I felt like I did not have the time to commit to the weekly sessions, I decided to join the group because I knew that floundering was not an option. I felt alone; I was focused on caring for my mom and also finding ways to manage my difficult emotions. It was me against the world. I knew I was “all in” but didn’t factor in that I would also feel all alone.
This is where the “we” comes into my story. The caregiver group opened up a world where I could meet with fellow caregivers who are also “all in.” We meet online once a week; after the first session, I was already counting the days until I would see the other participants again.
Finally, I had found others who truly understood me. Never once in the groups is the answer, “just don’t do it,” or advice to back off of the responsibilities of caregiving. We know we need to remain all in, we want to remain all in. Our groups became a place for us to talk about our challenges, listen to one another’s stories, share our collective wisdom and make astounding connections.
I am no longer alone. I am now on a journey with fellow caregivers and look forward to hearing how they managed their latest issue. We laugh together, we root for one another and we have found a lighter soul.
We know that there are not necessarily solutions to be had, but we are there for one another. We are heard, we are acknowledged, we express our grief, our losses and mostly we express our joys. We talk about those precious moments with our moms. Most importantly we are supported in our choice to continue in our most poignant role as caregivers. As we often say to one another, “We do this because we love them.” As simple as that.
Once I understood this, I learned that caregiving is joyous.
Lynn Chidwick lives in Guelph, Ont.