SC Barg
Two years ago this week we lost our brother Gary — our founder, my partner, and the man who built this community from the ground up because he believed caregivers deserved a voice. Gary founded Today’s Caregiver magazine, caregiver.com, and the Fearless Caregiver Conferences because he believed caregivers deserved a voice. He knew caregiving from every angle. He lived it. And throughout his illness, from diagnosis to his final days, he taught me something I want to share with every caregiver reading this today. He made sure there was little left unsaid.
The Person at the Center
In all the conversations we have about caregiving — the exhaustion, the logistics, the family dynamics, the search for support — there is someone who can get lost in the middle of it all. The person being cared for.
Not intentionally. Never intentionally. But caregiving is consuming, and it is easy for the focus to shift entirely to what needs to be done rather than what the person at the center of it all is actually feeling, needing, and wanting.
In my work as a Supreme Court of Florida certified mediator, I have sat with hundreds of families navigating the hardest moments of their lives. And when the person being cared for has a voice at that table, what they say is remarkably consistent.
They are not angry. They are not demanding. They are, almost without exception, worried about you.---
What They Are Trying to Tell You
- “I don’t want you to give up your life for me.”
- “Please ask for help. Don’t try to do this alone.”
- “I want to know what’s happening. Don’t protect me from my own situation.”
- “Include me. I am still here.”
That last one is perhaps the most important and the most overlooked. The person you are caring for is not simply a recipient of your love and your labor. They are a person — with opinions, preferences, fears, and wishes — who deserves a seat at their own care table.
At every Fearless Caregiver Conference, I watch caregivers absorb this and something visibly shifts. Because most of them have been so focused on doing — on managing, coordinating, protecting — that they have forgotten to simply ask.
Ask. Listen. Include.
Here are three things you can do this week that will change the dynamic between you and the person you are caring for.
- Ask them what they want. Not what you think they want. Not what the doctor recommended. What do they want? About their care, their daily routine, their wishes for what comes next. The conversation may be hard. Have it anyway.
- Tell them the truth. Care recipients are often protected from the reality of their own situation — and they know it. They can feel the conversations happening around them rather than with them. Treating your loved one as an equal member of their own care team is one of the most dignified things you can do.
- Let them help you. This one surprises caregivers every time. The person being cared for often desperately wants to contribute — to feel useful, connected, and present. Let them. Even in small ways. It matters more than you know.
What Gary Taught Us
My brother Gary spent his career making sure caregivers had a seat at the medical table. And when it was his turn to be cared for, he asked for the same thing for himself.
Throughout his illness Gary communicated openly and intentionally. He included his family every step of the way. He shared his wishes, made plans, and ensured the people caring for him always knew what he needed and what mattered most. He was an equal part of his own care team — from the beginning of his illness to his final moments.
That is what your loved one wants too. Not to be cared for from a distance. To be cared with. Present, included, and heard.
Ask them today. You may be surprised by what they’ve been waiting to tell you.
In memory of Gary Barg — founder, visionary, and fearless caregiver to the end.
What has your loved one taught you about caregiving? Please share your comments below.