Learning Curves

We are doing our usual summer exodus, escaping Arizona’s heat and traveling mostly in the Pacific Northwest. This year is all about learning curves. We traded Rex (our faithful old 1994 Rexhall motor home) in on a new, to us, 2008 Georgetown motor home. And now we are learning how to operate it! There was the “secret” switch that allowed the propane to flow—or not. There was the fridge that sometimes ran and sometimes didn’t; again, a “secret” switch that the repairman showed us how to work. New places to store items—where’s this? Who knows? Where’s that? Who knows? It will all work out, but it takes time—and patience.

A selfie with Jim, Dave and Helen

We’d just settled into our space in an RV park when Dave came over to talk to us. We both had Georgetowns—but then we found out that his wife, Betty (Bet) had LBD and so we ended up spending an afternoon visiting with the couple. They are experiencing a learning curve too. Learning how to deal with a degenerative disorder is not new to them—Bet has had PD for several years. They’d developed a happy lifestyle. Sold their big home and moved into a smaller home—the Georgetown—and started traveling to all the places on their “bucket list.” Got a tandem bike so Bet could exercise more easily. And generally adjusted their lives to fit Bet’s physical restrictions and keep her active longer.

But then she was diagnosed with LBD a few months ago. She doesn’t talk much anymore, choices are harder and judgment is poor now. She has hallucinations and Active Dreams. Bet is handling this fairly well (The apathy that accompanies LBD can actually be a blessing—things that once would have been devastating are now taken in stride.)

Dave, on the other hand, is having a hard time. He doesn’t mind helping her physically and he’s willing to make the decisions. But there are other issues that aren’t so easy. Take medications for instance. Like many LBD families, Dave and Bet have several doctors—a neurologist, a primary care physician and even a psychologist. The psychologist is actually a great idea for any couple dealing with the life stresses and changes that LBD brings.

As is often the case, these professionals have different views of what is needed for treatment. In this case, the psychologist suggested decreasing her Serequel dosage. Serequel IS a “black label” drug, meaning that people who use it are more likely to die sooner than people who don’t, usually from heart problems or pneumonia. It is also one of the most effective drugs for use with LBD symptoms like hallucinations and Active Dreams. Therefore, physicians and families must balance its advantages and disadvantages and choose what seems to be best for the individual situation.

“What does she take the Serequel for?” we asked.

“Hallucinations,” Dave replied. But even the bigger dose doesn’t seem to do much good.”

“Do they bother Bet?”

“No, they don’t seem to bother her much at all. It’s me they bother!”

“Hmm. Sounds like it’s you that needs the medication, then, not her! As long as hallucinations aren’t frightening or upsetting, it’s best to ignore them or just flow with them.”

Dave laughs and agrees that he is still in a learning curve and needs to work on what’s acceptable and what isn’t. Like us with our new RV, it all takes time and patience. Dave plans to talk to the neurologist soon about dropping the Serequel, at least for now. More about Dave and Bet next week!

For more about drugs and LBD, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, both available on our website, LBDtools.com.