I Advocate for Restraint Reduction. Then My Sister Was Put in Restraints.

“Is she a puller?”

Sometimes life intersects with your work in a way you don’t wish for.

This happened to me on November 20 when my sister—just two years older than me—suffered a hemorrhagic stroke requiring emergency brain surgery, leaving her in the ICU intubated and sedated for 10 days.

It has left her with apraxia, aphasia, and other related cognitive deficiencies. She has some paralysis and muscle weakness on her right side (yes, her dominant side), but frankly, we are delighted. Delighted because nothing is completely gone, delighted because every day brings more skills back to life, and delighted because she is slowly becoming herself again—and she is here and I did not have to plan a funeral.

For almost 16 years now, I have been working with healthcare providers, so let me start by saying I am grateful for the care she is receiving—it has been exceptional in most ways. But that did not stop a churning in my gut when I walked into the ICU to see her in soft restraints, and later as she became more aware, in a Posey mitt as well (yes, at times while being restrained).

Begrudgingly, nursing staff would allow me to remove the restraints or mitt when I was with her.

“I can keep her safe,” I told them.

As I watched my sister’s behaviors, I realized she was not really pulling at her breathing tube or IVs. What she was doing was trying to scratch her skin and remove items that were causing itches. My sister has severely sensitive skin. It didn’t take the nursing staff long to realize that my preference was to keep the Benadryl cream coming and to have a one-to-one nurse for her versus using devices.

I didn’t have to have a long discussion nor did I need to get angry. I just had to state it as my wish.

In my grief and worry, however, I didn’t really have the words to explain it all to them. How it broke my heart into a thousand pieces to see her like that. But they sensed it from me and allowed me the space to change the plan of care, and for that I am deeply grateful.

As she made her way out of ICU into the neuro unit, she was unable to swallow so it was deemed necessary to put in a feeding tube. We agreed. We also agreed that a PICC line would be better, as three veins in a matter of two days had ruptured from the IVs.

While having the discussion about doing the PICC line and the feeding tube all at one time, the surgeon who would be putting in the feeding tube asked, “Is she a puller?” to which a nurse responded, “Yes, she’s a puller.”

“Well then, we’ll have to put those mitts on because we can’t have her pulling that tube out!”

I believe out of my mouth came “No, not the mitts,” which prompted a long, graphic explanation of what would happen if she pulled out her feeding tube.

In my head, there were a whole bunch of inappropriate responses rolling around—most not suitable for print. Of course, I didn’t want my sister to pull out her feeding tube, but I know a secret.

The secret I know is that there are about a thousand different ways you can support someone who is uncomfortable and anxious because they don’t understand what’s happening. These, added to the many interventions for itchy skin, gave us options.

Most of the time I’m pretty good with words. But like my sister, at this moment, I couldn’t make them come together in a way that made sense. Somehow, I think the discussion was left at a “We’ll see.”

Probably from me.

If you know me, you know this was my grandfather’s favorite expression to end a discussion, but that “We’ll see” really meant “No way. Not happening.”

What was more surprising to me, however, was that I had to have a detailed conversation with several members of my family to explain my opposition to the use of the mitts. Once I explained myself, citing examples of how they were using them somewhat for convenience at times (not always) and how some nurses took the time to redirect her while others just opted for the mitts, and when I gave them examples of what happened when one nurse actually set limits with my sister and got her to stop itching and pulling, then I think they understood.

I have developed an efficient stink eye—it’s really all it takes. It’s an intervention that doesn’t require the use of restraints of any kind, and my sister is safe. She rolls her eyes back at me and stops scratching.

Thankfully, my sister is doing much better. Each day brings a reduction in swelling that allows more connections to be made. She is almost tube free, able to shower and use her own soap and wear her own clothes to help reduce the itching. I rejoice in some ways that I’ve had the opportunity to be an advocate in a very direct way, as most of my advocacy comes through my work.

I think next time I get pushback from an organization about the need for our training in the ICU or in med/surg units, I’ll tell them this story.