My Brain AVM Story: Finger-Spelling, Part II

I didn’t intend to write about the rest of “Finger-Spelling” quite so soon…but the piece that I posted yesterday about my experience of physical restraint in a hospital got some strong reaction, and I feel like I need to finish what I want to say about it.

A couple of things, though…

Nurses Rock

First, I’m over what happened to me that day, and what I’m going to talk about today. Neither story paints nurses in a good light. I had three bad experiences with nurses in the seven months of hospitalization after getting my brain AVM treated; the rest of the time I found that my nurses were amazingly sensitive and dedicated, despite being chronically overworked and assigned far too many patients on a shift. I saw patients hurl a lot of abuse at them…I even apparently yelled at a nurse one night to just leave me alone because I was never going to going to walk again anyway, why was she still in my room, get out, etc (I have no memory of this.)…and some days I wondered why they’d ever wanted to be nurses. I have a tremendous amount of respect and gratitude for the nurses who took such good care of me after my brain AVM surgery and stroke and during my recovery (and of other family members when they’ve been ill).

Ask, Don’t Assume – Kathie Snow Rocks, Too

Secondly, I want to link to this article by Kathie Snow, of the Disability is Natural movement, because it explains so well the point that I’m trying to make by telling these stories of being restrained in the hospital after surgery to treat my brain AVM: If we simply try to communicate, listen well, and don’t make assumptions, we have a much better chance of truly understanding a person’s needs and responding to the person appropriately.

http://www.disabilityisnatural.com/images/PDF/askassume.pdf

It’s an excellent article for *everybody*, not just people who work with disabilities.  I’ll use the story of my second physical restraint experience to illustrate how important it can be to ask, not assume.

A Bad Headache and a Grumpy Nurse

I was in what they call the Neural Step-Down unit at this point. I had a roommate, who’d also had brain surgery, but I didn’t get to know her very well; we were both sleeping a lot, and she got to go home long before I did. One night, not long after the surgery, I couldn’t get to sleep because my head hurt too much. I felt like someone was trying to open my head with a screwdriver.

My nurse was already annoyed with me. My call button wasn’t working, and it had been going off all by itself all night. I kept trying to tell her that it was broken, but she didn’t seem to believe me. When I actually did call her in to see if I could get more pain meds, she very shortly told me that I’d had all that I was allowed to have and I would have to wait.

Now, the unfortunate thing about the stroke-affected mind is that, especially at first, it doesn’t realize what’s happened. I’d have certainly fallen if I’d tried to stand up, but in my mind I could still walk. I decided that if I couldn’t have any more pain meds, I needed to take a walk to clear my head. So I sat up in bed and tried to take down the bedrails.

The nurse happened to be passing by, and saw what I was doing. She was furious. She talked about how she had too many patients to be constantly keeping an eye on me, making sure I wasn’t trying to get out of bed – as she tied my wrists to the bed. I cried myself to sleep.

Later, another nurse took the restraints off. I told my sister Rachel what had gone on when she came in the next morning. I don’t remember this, but my roommate told us that I’d stated explicitly the night before to the nurse that I’d not wanted physical restraint of any kind used on me.  Rachel talked to management about what happened. They apologized that I’d been upset, and that she’d been upset.

I got told this later. Rachel apparently said, “Upset? You haven’t seen upset yet. My father’s going to hit the hospital in about 45 minutes and then you’ll see upset.”

Dad talked to management when when he arrived, and I never saw that nurse again; I believe they sent her to another floor. But I was so terrified about seeing her again the next night that Dad spent the night in the waiting room, in case something happened.

The Point

I understand that the nurse was concerned for my safety and likely feeling stressed out by the demands of the shift. But I truly believe that if she’d sat down with me for two minutes, and listened to my reasons about why I’d been trying to get out of bed…explained that I’d fall if I tried to walk around… and said she’d try to get more pain meds ordered, even if she’d had no intention of doing so…I’d have stopped trying to get out of bed and just cried myself to sleep, without the trauma of  physical restraint. That two minutes of listening with no assumptions would have made all the difference.

I’ve taken a lot away from those experiences in the hospital after getting my brain AVM treated. Knowing what it feels like to be restrained myself has really shaped my beliefs on the use of physical restraints (restraint of any kind, actually) in vulnerable populations – it should be the last resort in a situation. It’s also changed how I view “problem behaviours” in the people I’ve worked with. If a person doesn’t communicate easily, I ask myself, “What could be going on that’s bringing this out? Is he too hot? Is it close to a mealtime and she needs to eat? Is there someone around that he doesn’t like?” Even in people who are non-verbal, you start to observe patterns once you get to know them…and there are all sorts of “listening”…

But I digress. For those of you who found the restraint stories difficult to read, I apologize. I posted them hoping that we could take something positive away from them about assumptions and communication and listening (and link to Kathie’s fabulous article), but I forget that people sometimes find that sort of thing upsetting…

I’m not around much this weekend, so I’ll see all of you on Monday. Enjoy your weekend…thanks for making this such a great first week!