Getting Out of the House

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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Lewy Body Dementia and Eating

Along about this time of year we all think a lot about eating—it’s become a Thanksgiving tradition to have a big meal and eat too much. But our loved one with almost any kind of dementia and certainly with LBD often have problems eating even a small meal. There are many reasons for this:

Everything is slower. It takes a lot more time for a PwLBD to choose what on their plate to eat, put it in their spoon and move it to their mouth. Lewy bodies makes everything smaller too—steps, movements, voice, and the bites a person takes. This makes eating an even slower process. A person with LBD may have just started eating by the time everyone else is finished and then they are “done” too.

When muscles get weaker, eating becomes hard work. Think about what it would be like to lift some stones that are just a little too heavy for you. The first stones would be fairly easy. You’d just need to exert a little extra effort. Of course, that is tiring. And as you get more tired, the task gets harder. And finally, it just wasn’t worth the effort. That’s the way it is for someone with weak facial muscles.

Lewy bodies take away the ability to smell, often well before dementia shows up. (In fact, one symptom of approaching dementia is the “return” of smell in the form of olfactory hallucinations, usually bad smells.) Eating becomes less fun because this loss of smell affects taste and things that used to be favorite treats may not be anymore.

Swallowing can be affected so that it becomes very easy to choke and aspirate—draw food into the lungs. While your loved one may forget a lot they don’t forget negative things as easily. Thus, the fear of choking remains. They remember that when they ate or drank, they choked and became frightened.

As thinking abilities fail, immediate gratification remains but the ability to see cause and effect fails. Thus, with immediate rewards replaced by hard work and fear, your loved one sees little reason to eat.

Then add the poor depth perception and other visual problems that PwLBD are even more prone to have than PwAD. If you can’t see what you are supposed to be eating, how can you be expected to eat it!

But there’s help. In the Alzheimer’s Reading Room, Bob DeMarko suggests that it is as easy as 1,2,3: http://www.alzheimersreadingroom.com/

1.  Use RED plates. This adds some contrast and makes the food easier to see, which can be quite important for anyone with the perception and visual problems common with LBD. People with dementia in general eat 25% more from red plates! (reference)

2.   Be a guide. Your loved one will often mirror your behavior. Use this to help them re-learn to eat:

• Set a place for your loved one and one for yourself right across from them, in their direct line of sight. Put food on both plates.
• Sit at your place, look directly at your loved one and SMILE. Don’t say anything.
• Still without talking, take a bite. Chew. Smile.
• Take another bite. Chew. Smile.
• Take your time. Chew slowly. Be patient.

3.  DO NOT TALK.

• Just make eye contact, eat and smile.
• Cajoling does not work with a person who cannot relate to reasoning.
• Talking about other things is distracting.
• Just make eye contact, eat and smile.
• Be patient. Be VERY patient and wait for them to follow your lead.
• This process may take several sessions.

A good guide demonstrates how to eat each and every time (like it is the first time, every time). The good guide does this with a smile on their face and no words in their mouth.

Your loved one may find eating difficult or painful. If this is the case, you need to contact a doctor that specializes with such problems regularly. Speech therapists can also help.

Happy Thanksgiving, everyone!

For more information about dealing with LBD, read The Caregiver’s Guide to Lewy Body Dementia. Order it from Amazon via the LBD Book Corner on LBDtools.com and help us spread the word.