Mind Made

“Why can’t you just stop!” Mom’s frustration causes her to snap at Lia.

Lia has been gagging and spitting up since her mini-meltdown several minutes earlier when she was denied a third helping of beans and rice. Experience has taught us that a third helping is more than her stomach can handle, even if she disagrees at the moment.

Historically speaking, Lia has been known to use various bodily functions to control the people in her environment, to express her displeasure, and to establish herself as the center of attention. Gagging herself until she throws up is one of her favorites.

For the purposes of this post, let’s just say she has been appropriately assessed and there’s nothing blocking her airway.

When Mom told her to stop, she actually complied for a few minutes. But then she started again. I stepped in and tried to redirect Lia’s focus. This time it worked. It doesn’t always work. And she isn’t always faking. In fact, sometimes the act that possibly started as make-believe quickly escalates into something that, in Lia’s mind, appears to be very real and needs immediate attention.

It reminds me of my grandfather after his leg was amputated just below the knee. He would spend hours wiggling his stump and then rubbing it as he tried in vain to relieve the pain in a leg that was no longer there. And of my aunt, who suffered from advanced dementia, when she would suddenly start dancing around the living room begging me to keep the dogs away from her. There were no animals of any kind in our house.

In both cases, the thing that caused them so much physical distress didn’t exist in a tangible form, but in their minds it was all too real and they responded accordingly. Mind made.

With my grandfather, and my aunt, all I could do was comfort and reassure, while attempting to redirect their focus as we waited for the moment to pass. That’s what I have to do with Lia when her mind creates the phenomena of physical distress – comfort and reassure, redirect her focus, and wait for the moment to pass.

With that said, I am aware that we may be inadvertently reinforcing the very behavior we want to discourage. It feels like a Catch-22. Even if she starts off under false pretense to get attention, if she doesn’t get the attention she will escalate until she actually needs the attention.

We have tried pretending to ignore her behavior, while listening for signs that she may be in real distress, but Lia is persistent and strong-willed, and the more intense she becomes, the higher her risk for aspiration.

I will also try to limit my response to the minimum necessary to ensure her safety, and deliver that response in the most nonchalant manner I can muster. When I know she’s safe, I will withdraw and focus my attention elsewhere, telling her, “Let me know when you’re finished and then we can ____ (insert fun activity here). This works best before the episode has peaked. Before her mind takes it to the next level.

I am currently trying a technique I call ‘heading her off at the pass’. If I know we are about to enter gagging territory, I try to distract her and redirect her focus before the gagging actually starts. So far it has been a hit or miss endeavor.

Mind made. As caregivers, both professional and family, this isn’t something we can ignore. And it isn’t something we want to encourage. What’s a caregiver to do?

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