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A Caregiver's Perspective from the Trenches

Updated: Jan 30, 2023


I wrote the following rant on 1-17-19 after reading another article about self care & care giving. I feel they have value and are true.

"Articles like these are useful, but they ultimately don’t address the caregivers real issue which is HOW? They tell us WHAT to do. I can tell you, I don’t know of *any* caregiver who would disagree with any aspect of this. They/we all know that we need help.

The hard fact is—the HOW requires you put a plan in place and you walk away. It’s the walking away part that we don’t typically choose to do because we are afraid. We wonder, what happens if something bad occurs while we’re gone? What if they don’t get their medication? What if the person handling them causes MORE problems (bed sores, UTIs from not getting them to the bathroom, etc) that we then come back to something worse!

Nobody tells you that in order to do what you need for your own survival, you must trust that you will be able to handle the requires walking away and not looking back.

THIS is the god damn elephant in the room that people who write such articles REALLY need to address. Caregivers spend so much time, effort, energy, don’t effing know HOW to turn that off and go be themselves again.

Themselves? Many don’t even remember who the hell that was, or who that is now...which guess what? THIS is what you get to struggle with if you DO take that leap, if you do trust that going is the best thing for both of you. Suddenly, stripped of caregiving tasks—you face your grief. You discover you no longer even know the person who looks back in the mirror because it’s the first time you’ve looked in one in forever.

In order for caregivers to do this, you have to teach them HOW. How to cope with all of it, because it is a hell of a lot more complex with layers that people who write this really understand.

—tell us HOW to get the financial resources needed

—tell us HOW to turn off the fact we care and HOW to walk away

—tell us HOW to cope with the flood of emotions that come when we do, and how to greet with love that stranger in the mirror

—Tell is HOW to train others in the nuances and complexities of our loved ones illness

TELL US HOW. Because we’re ready, desperate, in fact, to know."

—Deb Porter

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