Finding Connection When You Feel Alone
As a caregiver, I sometimes felt like I was living in a desert. Alone. As if no one really understood what I was living.
At the time, I lived in rural western Kansas, so it was easy to feel that way. There weren’t many people around, and caregiving added another layer of isolation. We traveled more than 57,000 miles to see specialists, which meant a lot of time on the road.
There were trips to Houston and hospital stays in Kansas City, nearly 350 miles from home, one of which lasted almost three weeks. Even when you are surrounded by doctors, nurses, and hospital staff, there can be an incredible loneliness that comes with caregiving.
I Wanted to Feel Normal
I did have social engagements. Early in my caregiving years, I had a job that took me to meetings with people involved in tourism from around the state. I enjoyed those gatherings. I liked being around other people and talking about things that had nothing to do with hospitals, medications, or the next appointment.
I also didn’t think it was appropriate to talk about caregiving in those settings. I wanted to feel normal. I wanted to be Susan instead of the wife whose husband was seriously ill. For a few hours, I could step outside of that role and simply enjoy being with people.
When that job eventually became too much for me while I was caregiving, I started the Equine Gestalt training program. Suddenly, I had a whole new herd of people in my life.
These were people who were there to work on their own issues, learn, and grow. We would arrive at our trainings with things we wanted to work on. Sometimes we would leave having completed one or two of them. Other times, something had shifted enough that we could see our situation differently. Either way, we often left feeling lighter.
There was something powerful about being with people who didn’t require an explanation.
I Didn’t Think I Needed Help
I also wouldn’t let people help me.
I didn’t need help.
At least, that’s what I told myself.
Then I was diagnosed with breast cancer, and two women insisted on bringing a meal to my house. There was plenty of resistance from me. After all, Mike couldn’t eat, and John was picky about what he would eat. I could figure it out.
Looking back, I realize the meal wasn’t really about the food. It was about allowing someone else to carry a small piece of the weight I had been carrying for so long.
I wasn’t very good at accepting help then.
I’ve gotten better.
There is Healing in Being Understood
Over the years, I’ve grown to see how those transitions are tied together. The woman who once felt like she was living in a caregiving desert has become someone who helps other caregivers feel seen and heard.
I’ve learned there is something healing about being with people who understand what you do.
You don’t have to explain why you’re exhausted. You don’t have to explain why an appointment can take over your entire day or why you can love someone deeply and still feel frustrated, overwhelmed, or desperately in need of a break.
You can talk about the hard things.
You can laugh about the ridiculous things.
You can say, “You won’t believe what happened today,” and know that someone else gets it.
There is relief in not having to explain yourself.
You Don’t Have to Do This Alone
I spent a long time believing I had to do caregiving on my own. I don’t believe that anymore.
I believe caregivers need connection. We need people who understand the complicated mix of love, responsibility, exhaustion, grief, frustration, and hope that can come with caring for someone else.
That’s why I created The Connected Caregiver Virtual Gathering, a free monthly gathering for caregivers and former caregivers.
We meet on Zoom to pause, connect, share what’s real, and remember that you are more than the role you have been carrying.
You don’t have to arrive with the right words. You don’t have to know what you need. You don’t have to have caregiving figured out.
You can simply arrive.
And maybe, together, we can make the journey feel a little less lonely—and help each other find our way out of the desert.
Click the button below to register for the next Connected Caregiver Virtual Gathering.
Every story needs a soundtrack.
This is the one I’ve chosen for this post—sometimes because of the title, sometimes the lyrics, sometimes simply the feeling it stirs in me.
