This week, George is still here. He is a stand in for your loved one with LBD. As you read this, use your loved one's name instead of his. George "sees" things. Things you can't see, but he can and he knows beyond a doubt they are real. Mostly, he sees "little people." Others with LBD see dogs, children, or even bugs. You call these "hallucinations" but George doesn't that. It implies that what he sees isn't real. Call them "little people" like he does. Then he knows you accept his reality and that's important to him. Actually, he isn't that much different from any of us that way. We all like to know that the people we care about accept who we are and what we say.
When George's little people first showed up, he was still able to reason well enough that he could test for reality. He understood that when he saw the little people but no one else did, then the little people weren't real. It's been over three years now however, and Lewy bodies have damaged his ability to reason and he can't do that anymore. Now he accepts the initial information as fact. The little people he "sees" are as real to him as the chair you are sitting on is to you.
Some PwLBD, especially those who've had traumatic experiences, will see scary things, but mostly what is seen is benign. They might be fascinating, fun or, like George's little people, just friendly companions. Some people hear sounds like telephones, but they don't hear voices like a person with schizophrenia does. George's little people don't upset him, but when you try to convince him that they aren't real, then that does.
Actually, George's "seeing" is more likely to upset you than him. Your distress is evidence of denial, an early step in the grieving process. Denial leads you to try to get you to accept your reality. When you get it that he can't, they you advance to sadness. It is normal for you to grieve as you see George's unwelcome changes. But it is not helpful to do it in front of him. He will mirror your distress and his symptoms will increase. Instead, step back, even leave the room if you must. Then when you can, return and give him the support he needs. This does not mean you shouldn't grieve. Just do it later, when he's not around.
You don't have to pretend to "see" what he does, but you do have to accept that his little people are very real to him. If you don't; if you try to convince him of your reality, he'll respond by feeling a lot of negative emotions like frustration and anger--intense emotions that make the situation even worse. The more upset he feels, the more stressed he becomes, the more irrational will be.
George can't change. He KNOWS his little people are real. You can change. You can accept his reality. (See last week's blog about how to do this.) When you do, he will calm down. As he does, the negative feelings will decrease. The sooner you can accept George's little people, the less impact there will be.
You can change but it takes time. At first, you will find yourselves arguing about whose reality is right. This normal. Don't beat yourself up over it. Just step back, and take a deep breath. Then start over. Take some more deep breaths. It's calming and the extra oxygen improves cognition...for both of you! Always remember to breathe out twice as long as you breathe in to prevent hyperventilation. You don't need to say anything. Just start breathing. It's contagious! George will soon start be breathing right along with you. Then you can go back to being supportive.
Some helpful hints about dealing with hallucinations:
- Ask George if his little people are bothering him. If he says they aren't, then you can ignore them. When Annie "saw" a woman on the couch, Jim asked, found out Annie wasn't bothered, and said "OK, we'll just let her sit there." and Annie was fine with that. Let yourself be fine with it too.
- Ask George to tell you about them. Ask questions. What kind of clothes are they wearing? What color...? This will often make them disappear...his brain can't deal with so many specifics.
- If they are bothering him, join his reality and you can probably get rid of the hallucinations. Jim used to usher Annie's "visiting" children out of the house, saying, "OK, kids, time to go home now." Once the door was closed, so was her hallucination.
- Accept George's little people as a fact of life, a part of the family. The more relaxed you are around then, the less problem they will be to either one of you.
Next week, the blog will be about some revolutionary ways to accept delusions.
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.