By Janice Will and YOU, the Collective Will Community
Here’s Janice’s writing that came from these prompts. We’d love for you or your loved one to add your own, right in the comments. Let’s see how long our love letter can grow.
Dear Darling Caregiver,
I’m sure sometimes you don’t feel so darling.
You are.
Guilt has no part to play. When you are cross or have a snappy day. You’ve been overtaxed. You make mistakes.
Caring is never a mistake. It’s blowing the clouds away. Being the SUN when it felt like the sun would never show up.
You’re waking us. You’re helping us out of bed. You’re helping us get dressed. Helping with our hygiene, our hair, taking on bathroom duties, our tediums of daily living.
Some of you are just showing up to scary situations for your loved ones. You will need new friends. People with hearts like yours. Others have long been in medical bills and options to sort out. There will be times when you think you can’t do it.
You’ll do just fine.
You’ll accept challenges and excel at them. Living with Parkinson’s, being driven in the wheelchair, being in the passenger seat, going down the stairs backwards, things out of my control, tipped backwards—I’ve watched my son grow with caregiving with confidence and dignity.
I wish I could say everything will be okay. But some will. The doctors aren’t always nice. Some think you don’t know anything at all.
People will know the difference you make. Caring pays dividends. But it’s not the people you hope would help and its not the people you would expect.
On the days you’ve been so bored and so frustrated, Doctor’s appointments overlapping, not a lot of variety—
I see how much you are doing.
You deserve to receive in direct proportion the happiness you give. I couldn’t do it without you. We are a team and you let my needs be the leader.
You’re knowing our medicines and their side effects. You’re learning how to become physical therapists. You’re taking considerations to help with our mobility. Holding onto the gait belt. Putting tape down on the ground to guide us. Guiding us with lazers. You’re coordinating activities. Enrichment. Your social life around our needs. You’re helping us back in bed and tucking us in with teddy bears.
In the dark it’s hard to picture what the future holds. When times are scary, you don’t need more to do but there’s always more. Look through scrapbooks. Review pictures of growing up.
When you wake up in the morning, it’s a new day to build memories. Discard the ones that were disappointing. And heighten the ones that hold promise.
Hug often and boldly.
In the quiet moments step back and have confidence in the present you have built.
If there are beautiful days ahead, you will be the one that makes them happen. Enjoy the splash of water on your toes or through your hair and believe in what you have accomplished. Even when it looks small. Most of all then. An infection avoided. A visit from a friend coordinated. Cards collected and brought to the hospital or facility. A nice meal. Companionship watching TV.
Caring is never wrong.
Dear Caregiver,
I am not going to tell you that you are not alone, if alone is how you feel, and what the people and systems that neglect, take you for granted, or exploit you have made you feel. So I am not going to claim otherwise—sometimes the greatest love we can show is to interrupt the gaslighting. Once, I participated in a “Theater of the Oppressed” activity where one person lay down on the floor with minimal ability to move. Another joined them, and the facilitator told them that from this vantage point, they could provide the first with accompaniment, could come to understand their needs, reach out, and collect vital resources while remaining fully present to them. This, she explained, is what differentiates solidarity from charity. I believe that to fully appreciate the labor of care workers, and the situations you’re facing, we need to become enough a part of the care team to truly see you. These are the relationships, the networks, I’m committed to helping build. Not only to ease the burden on those I love, but to plant the seeds for a different future, to shape the patterns that affirm our lives rather than profiting off our deaths.