The blog is going up early this week--to make up for the times when it was late! We are visiting family and getting ready to leave on a long weekend of camping.
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Last week you met Dave and Bet and we talked about the learning that’s required of the new LBD caregiver. An active couple, they hadn’t let Bet’s PD stop them. A few months ago they were riding their tandem bike in marathons. Now, she falls asleep on the bike—not very safe on a two-wheeler! Dave solved that problem with a new vehicle called a Quadribent—a four-wheeled contraption something like a land-locked paddle boat. Now Bet sits beside Dave instead of behind him and is fastened in with a seatbelt. “It’s not all good,” Dave tells us. “With the tandem bike, when I pumped, her pedals went round with mine and she had to move her legs. Now each side is separate and nothing keeps her from stopping. But at least, we can get still out and bike, which we’ve always enjoyed.
Dave knows he and Bet are on an adventure where the rules continue to change. He is fortunate that he can be open to new ideas when old ways don’t work anymore. That’s what is needed if you are going to survive as a LBD caregiver.
With Bet’s awareness is now fading faster than her physical abilities, eating out has become a challenge too. “Appetizers!” Dave exclaimed as he told us about his latest discovery. “They work better than regular meals. Finger foods, you know. Vegetables, and dips and stuff like that. But not sandwiches. She can’t hold them together anymore. Cheeseburgers still work, if there’s lots of cheese for glue.”
Dave has learned to flow with what works. Appetizers are great. So are chicken nuggets or other things you can eat with your fingers. On the other hand, things that can fall apart like sandwiches are poor choices. If your loved one does want a sandwich, be sure to ask for a knife and fork too. You’ll need them!
“I’ve begun to worry about public bathrooms,” he said. “The other day, she went into one and didn’t come out for the longest time. Finally, a lady came up to me and asked if my wife had blond hair. When I nodded, she told me that there was a woman with blond hair standing in there, looking confused. Then that kind lady told me there wasn’t anyone else in the bathroom and so she’d stand outside and keep watch while in went in and rescued my wife.”
Dementia makes decisions very difficult. Faced with so many doors, it’s no surprise Bet was confused. Many malls and large stores have family bathrooms. Doing some research before you go out can make your excursions a lot more pleasant. Some places have a single stall or room and that works well too. You can lock the door and no one is going to walk in on you. Try to limit your trip to places with family or single-stall bathrooms. However, your loved one needs to use the bathroom where that’s not an option, you can—and should—go with them. You might explain and ask for help—perhaps, ask someone to stand at the door and keep the place empty until you are done. People will usually be very glad to help if you are willing to ask.
Doing your research is as important as being open to change. Knowing what to expect, or how others have handled challenges or what’s available can make your job much easier. Asking for help is also important and the next blog is about just that.
For more about adapting and doing research, 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.
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