Let me re-introduce George, a stand in for your loved one with LBD. Just substitute your loved one's name for his as you read along. George's LBD is far enough along that his ability to think is damaged. He sees his spouse, Mary, on the phone and he has the same feelings you had of being left out. But he can't use his reasoning ability to dismiss those uncomfortable feelings--and they build. Then his brain makes up a story to make sense of these terrible feelings. And now he KNOWS that Mary is laughing with a lover and planning to leave him.
A few weeks ago, we did an exercise where you imagined where you lived and I tried to convince you that you didn't live there. George's belief in his brain's drama is as firm and solid as yours is about where you live. You will no more be able to convince him that it isn't real than I was able to convince you that you didn't live where you live.
George's ability to control his impulses is also damaged. And so what he feels, he acts upon. He immediately accuses Mary of laughing with her lover and planning to leave him. He doesn't wait until after she hangs up and ask for answers that might change his mind. He KNOWS the answers already. His brain has supplied them. And he CAN'T change his mind. To do so would be to deny his very sanity.
Quick review of emotions from last week: Emotions add impact to an event and the more intense the emotion, the better we remember. Negative emotions are more intense because their function is to initiate action--to cause us to move away from or change whatever is uncomfortable.
And so, back to George. His reasoning ability is damaged, but his memory is fairly intact. Unlike someone with Alzheimer's, he can remember names, and events. He may get them confused, but he remembers. And he especially remembers situations where there are strong negative emotions. The more negative feelings around an event, the more likely he is to remember it--and the longer he will remember it.
And so how do you think George feels when Mary denies his accusations? Tells him she'd never think of doing anything like that. Maybe even cries. Remember, George believes with all his mind that he is right. Does he feel unheard? Lied to? Frustrated? Frightened? Does Mary's denials increase or decrease his negative feelings? How long do you think he will remember this? Will he obsess over it? Bring it up again and again? Get angrier and angrier with each denial?
So now, if you are Mary, how can you deal with such rigidity? How do you defuse George's negative feelings? First, as long as those feelings are present, George can't change. But YOU can. You can change from trying to convince him to accept your reality to accepting his reality. You don't have to believe it, but you do have to accept it. It's that simple...and that difficult. You have to let them know that you hear them. Last week, we did that by repeating what George said about his hallucinations. However, when the person with LBD is accusing you, there's another way that works even better.
Just say "I'm sorry." This is very simple...and for many, very, very difficult. But give it a try. You don't have to admit you did it, but you must apologize. This defuses the situation and decreases the emotional load.
- I'm sorry I made you feel that way. (Be careful not to say "I'm sorry you...." This just puts it back on your loved one.)
- I'm sorry, I won't do it again.
- I'm sorry. That must feel awful. Speak to the feelings.
- I'm sorry. This is hard for both of us.
With each round of sorrys, George's negative feelings will decrease. Then you can move one.
Start deep breathing. You don't have to say anything. Just deep breath. It's contageous! Soon he'll be deep breathing too.
And finally, once you are both calmer, try some distraction. Ice cream is always a good choice!
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
For information about better communication, view Teepa Snow's videos:
Teepa Snow's Positive Approach to Dementia Care
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.