In the summer, we stay at RV resorts a lot. On Saturdays, they usually have a breakfast where Jim gets to fill up on pancakes. A while back, we met Dorothy and Ben at one of these Saturday breakfasts. We connected and sat visiting for a long time. Ben was very open about his PD and MCI. Both were making an effort to keep on doing the activities they've enjoyed for years, even though they understand that they have to adapt along the way. A big adpation came when they quit full time RVing. Now they they just go out to RV parks close to home for a week or so at a time--and Dorothy drives. A few days later, we met again, to play a card game. It was a game Ben's been playing every day for years and we all had a good time.
It didn't go so well, when Dorothy and Ben came to the clubhouse one evening to play another card game. It was similar to one they were used to playing, but even with help, Ben was lost. Although the other players were patient and accepting, the experience was embarrassing and discouraging for Ben. Eventually, he just quit. “I’m going to go walk the dog,” he said and left us to our game. That evening Dorothy and Ben learned some important lessons.
• Dorothy and Ben knew that a new game would be beyond his abilities. However, they thought that since this game was similar to the one he already knew, he’d be able to learn it. Not so; his MCI had become so advanced that the new rules were just as confusing as a totally new game would have been.
The lesson: Don’t add new rules to an old game or task. This is as bad as trying to teach your loved one a new task or game. Both will lead to discouragement and possibly, quitting altogether. Actually, you CAN teach a person with early to mid LBD something new. But it needs to be done in very small increments and with many, many repetitions. A normal person needs to repeat something about six times to learn it. Double or triple that for someone with LBD. But remember that your loved one with LBD can also have Alzheimer’s, where memory is more of an issue. If AD is involved, learning will likely not happen.
• The new group was comprised of seven people, far more than our the cozy group of two couples that Ben had been playing with the previous day.
The lesson: Three people are about all a person with MCI can deal with. Maintaining focus is already an issue, and adding more people becomes too distracting. Keep the group to no more than four, including your loved one.
• The new people were strangers. Dorothy and Ben had never met them before, although we all belong to the same travel group and have similar interests.
The lesson: Having to deal with strangers, even friendly strangers, increases anxiety. New people should be introduced one or two at a time, with the people being the focus, not an activity, such as a busy card game.
• These people were accepting of the “beginner” in the group, but became restless when he didn’t catch on, time after time.
The lesson: It is important that participants understand going in that the goal is to socialize and enjoy the game, not to play well—or quickly. The easiest way to do this is to make up your party of friends who already know your loved one. For instance, a golfer with MCI might limit his playing mates to a few buddies who are aware of his abilities.
• The card game was in the evening, when Ben’s thinking abilities were at their lowest.
The lesson: Play in the morning when thinking levels are at their best. If that isn’t possible, consider playing in the early afternoon, after your loved one has had a nap.
• Dorothy and Ben almost always go everywhere together. By mutual agreement, they always have. But now that Ben had become more dependent, Dorothy would like to get out on her own occasionally. For example, she’d like to play games that are more challenging than Ben can now play.
The lesson: Develop a ritual of "girl's (or guy's) time out" while your loved one is still able to stay home alone, You might arrange to meet with friends once a week to play cards, go to lunch, or just visit. When your loved one can no longer stay alone safely, don't give up your respite time. Instead, arrange for someone to come and visit with him while you are gone. Respite times are a must for all caregivers.
Dorothy and Ben are also doing a lot of things right. Next week, the blog will be about this.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia