Most LBD caregivers have heard this: “It’s not my loved one acting out. It’s the disease.” Mary Givens often responds to that with a “Yes, but.” “Yes, but it is so difficult to separate the person who still looks and often acts like Ed from his disease.” “Yes, but it still hurts.” “Yes, but I forget.” And so on. Being able to separate yourself from a person’s action is a learned behavior—an adult behavior. It takes insight, and the ability to make a conscious choice to look at the situation a different way.
Mary is a grandmother as well. For her two year old grandson, Jerome, everything is about him and he acts on his feelings without thinking. This is normal and he will grow out of it. Not as quickly as you may think, however. Mary’s son just went through a divorce and his 15 year old daughter, Megan, is devastated. She believes she caused the divorce because her dad couldn’t deal with her teenage behaviors. Even though her parents have insisted that this isn’t so, that it was their inability to get along, Megan still feels to blame.
In fact, do we ever grow out of our self-centeredness completely? Well, yes, most people do, but we often regress, especially when stressed. Stress limits our resources and we tend to regress back to earlier coping behaviors—to acting on feelings impulsively with little or no evaluation as to their validity and to seeing things from a lens that excludes other people's feelings and concerns. The person who “never” cries, cries. The usually careful dieter pigs out on junk food. The caregiver who can usually recognize that her loved one’s behavior isn’t about her takes the behavior personally.
With LBD, the person begins to regress back to that place where everything is again taken personally. like Mary’s grandson, everything is about "me."
Mary is like most people. Her initial response to Ed’s negative behaviors, even when she knows it isn’t really about her, is to take it personally. For a moment, she is shocked, angered, scared, insulted, etc. However, she has found that when she acts on that initial feeling, she is in a no-win situation, squabbling with Ed like a couple of toddlers. No one gets their needs met. Certainly not Mary, who probably ends up crying. And not Ed, whose behavior was likely a stress-related communication about something he needs.
Ed can’t change. He will likely continue to express his needs with shouting and other acting out behaviors. And Mary will continue to respond initially by taking it personally. But Mary doesn’t have to stay there. She can still think and make judgments and choices and act on them. And so Mary makes a conscious choice to view the behavior as a symptom of Ed’s disease. Immediately, this reduces her stress level. It is no longer a personal assault. It is now a cry for help. Now, in caregiver mode, Mary starts looking for the cause of Ed’s irritability. She knows that if she finds it and responds to that, Ed will probably calm down.
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
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.