Conversations in the Hot Tub

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.

Care facilities just don't get (understand) it"--but they can.

“They just don’t get it.” That’s what Dr. Sababagh told us about care facilities and LBD. Dr. Sabbagh was one of the speakers at the 2011 Arizona Alzheimer’s Consortium Conference. He is also a local expert on LBD.

“Do you mean that because the staff in these facilities don’t understand LBD, their LBD patients act out more and have more hallucinations and other LBD related problems?”

“Yes, they just don’t get it,” he repeated.

And so often, they don’t. They don’t “get” (understand) our loved ones’ sensitivity to medications and why they act out so much more when given the same medications that their other patients do fine with. They don’t get our loved ones sensitivity to stimulation—to anything that is “too much” – too much noise or sunlight or excitement. Expecting the gradual decline of an Alzheimer’s patient, they don’t get our loved one’s ups and downs and often believe they are faking, or lazy, or obstinate. They don’t get “showtime” and believe that it demonstrates what our loved ones could be like all the time if they only wanted to be.

But there’s hope. In many cases our loved ones respond better to the care of well-trained staff than they do to medication. (And isn’t that wonderful, considering all the problems they have with medication!) The Beatitudes, of Phoenix, AZ, report that their regimen of caring behavior management eliminates the need for most medications. Caregivers nationwide have told us about loved ones who had become unmanageable in a facility clueless about LBD are now doing well in a “Lewy-savvy” facility.

Any care facility can easily become Lewy-savvy. If your loved one is in a facility, do suggest our LBD Training Kit. Even if the staff appears to be well trained, new staff will need training. Our kit is designed to give facilities the tools they need to do their own LBD training—no need to find an outside expert. And if you are already familiar with our book, A Caregiver’s Guide to Lewy Body Dementia, you know the content will be trustworthy and supportive of your loved ones. Send them to our website: http://lbdtools.com