My inspiration for a blog didn’t come from a support group this time. This time it came at the end of a long, hot day of travel. We set up the motorhome, and swimsuits donned, went in search of the swimming pool and hot tub. There was another couple in the hot tub and we struck up a conversation. Turns out the couple was local and both had been working in supervisory positions in residential facilities for over ten years.
I shared that we taught about Lewy body dementia. “Hmm, is that Alzheimer’s related?” one asked. The other one just looked blank. These weren’t uncaring people. They were professionals who appeared to enjoy their work and their patients. Yet, neither of them knew about LBD even though they likely work with people who have it every day. In fact, as we went on to describe the symptoms, they started nodding their heads. Yes, they could identify patients in their facilities that fit the descriptions.
They told us about a man who would act out every so often and become so combative that they’d have to send him to the ER. They obviously didn’t understand how to use behavior management to avert these outbursts—or even to look for triggers. And a lady had syncope—she’d pass out and nothing could revive her until she came out of her “coma” and began acting “just fine” again, and other similar stories.
In the process of our fairly short conversation, it became apparent to us that these professionals weren’t aware of how dangerous some drugs were for these patients, or how upsetting stress was, or even how stressful some common place things like too much excitement or light can be. Our hot tub conversation brought back the question I blogged about a while back: “Where’s the rage?” And this time, I was feeling that rage. Why is it that the very people who are responsible for our most debilitated loved ones don’t know or understand this not so rare disorder? Why aren’t they being taught?
I know, I know. Be patient. It’s still a “young disorder.” But it’s still frustrating. For now, I just hope that our discussion caused them to do some research and learn more about this disorder that they deal with on a daily basis.