We spoke with 100 caregivers as we built Dez. Here's what they told us.
1. I'm tired of being the caregiver because I'm exhausted from managing the care. From every micro decision to the analysis of the small things, caregivers' minds were preoccupied non-stop with the endless procession of tasks and changes they needed to coordinate. They care deeply but the task of caring was consuming them.
"Just don't ask me what's for dinner."
2. Just take one thing off my plate. One reason we don't ask for help is because it would take too long to explain what needs to be done, why it must be done a certain way and things to look out for. Often when family offer to help, they miss a few things especially the signals that something is odd or wrong. What might seem like a minor issue could potentially create a health crisis.
And even after giving them everything they need to help, we still get asked a thousand questions. We don't have the headspace to answer a thousand questions.
3. I want to spend more time in the present than in my head. This comes up often. Because we are the ones who are like the program manager, hygienist, doctor, nurse and everything else that we do, we don't often get to stay in the moment and enjoy. Even if we do, it's fleeting cause there's the next thing to get done.
"I want to spend more time with my child as he explores the world from his wheelchair. But I'm running through the lists of things to do after that."
4. We need to put ourselves first but... Sometimes we skip meals or just grab something on the go as it's easier. We put our own needs last because we feel guilty for having time for ourselves. Even when we do have time for ourselves, instead of doing the things we thought we'd do, we collapse in a heap. One caregiver said she was at her hair appointment when they let her sleep on the chair for two hours. She was out cold.
Caregiving doesn’t come in clear steps. It’s constant, unpredictable, and carried mostly in one person’s head.
It’s the quiet responsibility of remembering everything, noticing small changes, and making sure nothing falls through the cracks.
Caregivers aren’t asking for more to do
If we can reduce the mental load, even a little, they get something back that caregiving slowly erodes: presence, energy, and the ability to just be there.
That is why we are building Dez.