Accepting Delusions

Today,  think of a time when you had an immediate reaction to something. Let's say, you saw your spouse laughing with someone on the phone. Did you have any niggling feelings of being left out? That's normal. But before you acted on those feelings, you used your reasoning ability to tested them and found them lacking. Then, you let them go and got on with your life.

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.

Accepting Hallucinations

Last week the blog was about how caregivers can reduce stress by accepting their loved one's reality and allowing them to feel heard. This is no small thing. This week, we expand on this. Please go back and read the last two week's blogs if you haven't already. It's important that you understand how fully a person with LBD (PwLBD) is locked into their own reality.

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.

Emotions!

For the next few weeks, these blogs will be about ways for caregivers to interact with their loved one that make life easier—for both people.

Meet Geroge, a composite of many of our LBD friends. As you read, substitute your own loved one’s name for his. As George’s reasoning ability wanes, his dependence on emotions increases. He will be very sensitive to your emotions, while his own emotions, unfiltered by reason, drive his thoughts, decisions and actions.

But let's back up and talk about emotions in general.

• That part of the brain where emotions are controlled is also involved with music and rhythm, and smell. Therefore, these tend to be all mixed together. A tune or a smell easily evokes emotions.
• The more intense the emotion you have about an event, the more important it is to you and the longer you will remember it.
• Positive emotions encourage us to relax and stay put, to enjoy what we have. They are calming and comforting, but seldom intense.
• Negative emotions are more intense and draw our attention more quickly. It is a safety issue. The cave man needed to react with strong physical actions when seeing something fearful like a saber-toothed tiger. Today, we react the same way to psychological fears. Negative emotions encourage us to react, make changes, move away from the discomfort they cause.
• Experts in critiquing say that it takes about six positive comments to equal one negative comment.
• An event usually evokes an emotion, which is tested by your reasoning ability, often before you are even aware of its presence. You gather information from your surroundings and from your memory to decide whether to accept the feeling at all.
• You also test for intensity, and decide how afraid or happy are you about this event.

For example: you see a dog and feel an instant jolt of fear. You see that he is wagging his tail and you know from your own history that tail-wagging means "friendly." But you also have a piece of information in your brain that says that a dog might feel threatened if you try to pet it and so you don't. You have judged your initial fear to be far too intense, but not completely inaccurate.

Now add dementia.

George sees the dog, feels the fear and start screaming. He is not able to test to see if the fear is appropriate or not. This is true for any event, hallucination, dream, TV show, etc. that elicits an emotion. He can't test for reality.

George also can't test for how fearful the situation is. He’s either afraid or I'm not afraid.

• George is a mirror. He will pick up whatever emotions you project, and mirror my version of them back to you.
• However, George’s version will center around him. He takes everything personally. And so to him, if you are angry, you are angry at him. If you are sad, you are sad because of him. If you are happy, that's because of him too.
• George will react to negative emotions with increased LBD symptoms, increased acting out and less cognitive ability. And because they tend to start out more intense, he will react strongly.
• George will react to positive emotions with fewer LBD symptoms, less acting out and more awareness.

George’s emotions are raw, unfiltered by reason. His damaged brain will make up stories to account for those feelings and he’s stuck with this. He can't test the stories for reality. This is his truth, his reality. He can't change that.

He can't initiate change, and seldom sees a need to do so. Why would he want to deny his truth? You CAN change. Instead of trying to get him to accept your truth, your reality, start with an acceptance of where he is. Then you can model a change of behavior that he can mirror. He will always believe his truth, but you can help him to move to more a more peaceful, comforting emotional space.

Next week, will be about acceptance and how to use it for a better quality of life for both caregiver and loved one.

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 wonderful information and videos about interacting with a person with dementia, go to teepasnow.com

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.

When a Loved One Has Dementia

Great news to folks in the Phoenix-Mesa, Arizona, area. We have two events coming up that you won't want to miss. We are very invested in helping caregivers find ways to deal with LBD and other dementias with fewer drugs. LBD caregivers especially know how important that is. And you also know how difficult it can seem with all the behavior issues that Lewy can bring out in our loved ones. Our goal with these classes is to offer you ways to do deal with these issues that you might not have considered.

The first is a two hour class called "When a Loved One Has Dementia." We will be talking about dementia in general and LBD specifically, focusing on ways to relate that cause less stress to both caregiver and loved one. You'll even get to practice some of the suggestions. No need to register for this class. Just show up ready to learn!

• Date and time: Sunday, March 13th, from 1:30pm to 3:30pm
• Location:  Unity of Mesa Church, 2700 E. Southern Ave, Mesa, AZ. 
• Cost: A $15 donation is suggested, but no one will be turned away.

That class will give you a small taste of what our second event, Alternative Therapies for Dementia Care, will be like. This one is an all day event, with five sessions,. Ours will be the first session, but four very talented people will follow with hands-on sessions about different types of alternative therapies and how to use them with people who have dementia or other neurological disorders. We've already advertised this workshop once, but the date has been changed. It will now be held on April 30th. If you go to HealingThings.com and register before March 15th the cost for the whole day, tools for each session (including one of our books!), breakfast, lunch and snacks is only $155.

As a family caregiver, you may think that an all day event like this is too long to be away from your loved one. However, taking time for yourself can be very therapeutic for both of you so it is worth considering. Such a fun-filled day will send you back home feeling revived and better able to do your job.

If your loved one is attending adult daycare or living in a care facility, this is also an excellent workshop for professional caregivers. Pleases share this information with the facility staff and suggest that someone attend. They won't be sorry they went! We know the other presenters.They are all excellent in their field and all are invested in teaching ways to use these therapies to increase quality of life for the person with dementia while decreasing the workload for staff...or family caregivers.

 Here's the new flier:

Click here to go to HealingThings.com for more information and to register.