Persistent and recurring visual hallucinations are often an early symptom of Lewy Body Dementia – LBD. This was true for my husband, Richard. Not all LBD hallucinations are fear based, but Richard’s were. His ability to communicate clearly has been impacted, and sometimes words come out in an unusual and surprisingly poetic way.
Between 2013 and 2014, I documented, as clearly as I could, exactly what Richard told me he saw. I share what he told me as a way of providing insights to those whose lives are impacted by this devastating disease.
At the time, we knew he had Parkinson’s, but we knew nothing about LBD. The hallucinations and dementia were far more difficult to manage than his physical symptoms. Now that his disease has progressed, his hallucinations have become more manageable and less frequent. But LBD remains our biggest challenge.
When Richard is having hallucinations, I try to do the following:
- Respect what he sees. Dismissing his reality is not helpful and can actually make it appear that I am not trustworthy.
- Remind him that we are safe and secure and that everyone is on our side.
- Ask him to look in my eyes. This can help ground him. Remind him that I love him and we are safe and secure. If I’m part of the hallucination, however, and am perceived to be involved in some conspiracy, I need to back off and give him some space.
- Ask him to describe what he sees. Sometimes this causes him to focus a bit more. What he sees can give me insights into how he is feeling. Anxiety produces scary hallucinations, but if he is calm and secure, the hallucinations tend to be positive.
- Improvise to turn the negative situation into one with a positive outcome. For example, “It first looked like it was a bad guy, but he’s actually very friendly and on our side,” or “I saw that guy before, and he’s harmless and is actually here to help keep us safe.”
- Tell him that he can instruct the people to back off and leave him alone.
- Walk slowly toward the hallucination and tell the ‘people’ Richard is seeing that it’s time for them to go away now.
- Move and talk slowly and calmly. Fast movements cause higher anxiety.
- Be mindful of my own emotions. My own frustration, anger, or anxiety will make things worse.
Here’s what Richard experienced as written from his own words:
There are people who come into our house uninvited, and they are not always friendly.
There are so many bad boys, and they are both black and white; some have tattoos. These people might hurt us and others. Richard is in range of them. If Richard tells them to go away, they may hurt generations of people.
Sometimes there are a lot of people on the balconies. Whole families and generations live outside, where the garages are. They sleep during the day. They could be political refugees and protected by the government.
Once one of them, a punk, tried to get in the house, and Richard had to physically push him out. He pushed back; then Richard pushed back again harder, and he went away.
The plants on the balcony can turn into short people.
Sometimes a family of dwarfs stays in our house. A girl wearing all leather, including a leather mask, accompanies them. Everything about her is hard. One day she was standing by our bed, looking Richard over. She stayed a long time before leaving.
Our totem pole is particularly interesting, as frequently people live inside. It is hard to tell if the real totem is on the floor or in the nearby mirror.
Recently Richard saw an old man and a woman walking into the totem. They were thirty-seven feet tall and twelve inches short. They went inside to sleep for free. The old man didn’t want to do it. It’s irresponsible. But the woman said he had to.
There is a woman who has had her lips cut off by someone mean. This is very disturbing. She sometimes lives in the totem and lingers in the house and on the balcony. Richard feels sorry for her.
There was a young woman who came in the house a lot a few months ago. She had a crush on Richard. She hasn’t been around much lately.
There is a war being fought outside the walls of our condo complex in the direction of Sixth Street and also behind the garages. There are pieces of military machinery and people outside.
There are commandos who practice war in the trees. Their techniques are advanced, and they use technology. The quality of display after they work is phenomenal. They each have different systems.
There are up to twenty-four commandos total in the trees at any time. The time that they stay varies. They have fighting dogs who are killer strong and are also guide dogs.
One guy in the group has binoculars. He is the general and is more powerful.
The commandos represent the future of America. They are young. They are a special band. Everyone who works here knows their lives are important.
They can stay for years and never be touched. If you look into their eyes, you can see that they are not unjust.
They are training for the end of the earth. We need to read a lot about history to know how to close the nuttles. They make the rich feel fear. Fear of invasion.
There is pressure against us and other groups. Anything could happen. We are in a danger period.
Why would the military not try to do something dangerous?
There are two tribes on the right-hand side—hundreds with warfare available. It could all be parked outside. It’s a great place to live. Everyone trusts.
How many places like this have the ability to strike and find people to blow up?
Many people don’t buy it. There are always people who can break the dam. It’s hard to think about it.
This is all fake information. But what if it isn’t?
The most overwhelming thing for Richard is this: “Where are these people coming from? What have I gotten myself into? I don’t want to give them a ticket to Freetown and end up in an institution.”
He asks, “What are they about? Why us?”
It’s been rather quiet around here for the last few months. Occasional people come in the house at night, but they go away when we turn on the lights and look around for them.
But yesterday was a very busy day. It started with a man sleeping and eating in our bedroom. Richard woke me up to look at him. But when we turned on the lights, he was gone. He was very fast.
And then there were a group of them in the closet—a whole bunch of them crowded in. They worked for the military and were there to protect us from the technology. They’re on our side. They stayed longer. They never really leave, actually. They’re around even when you can’t see them. They can disappear into the walls, no problem.
The plants on the south balcony turned into little children again. Today they are musicians, and they played for everyone down below. People danced to their music.
Next, a woman appeared in the corner of the dining room. She was old enough to influence. She wore a red patterned dress, and her arms were hooks. Her real arms were gone. She left when I walked in the room. Richard tried to warn me to slow down so as not to scare her, but it was too late.
There are a lot of conspiracies around. For example, most people would not expect that there is a prostitution ring right here in our condo complex, an over-fifty-five community. We don’t talk about this often, as it is very dangerous. It’s unwise to even write about it. It’s unacceptable to say this.
There is a rock band here to perform on our neighbor’s patio. There are a lot of players—ten to fifteen. They look scruffy. It oils up the neighborhood. Their technician is unbelievably talented. Their equipment is weathered by the road. But the technician ensures there are no hitches, and its state of the art—as much as it can be. The setup is incredible, with a great stage and performance area.
Our neighbors travel a lot and are out of town. African kings live there when they are gone. We shouldn’t tell them; they would be jealous.
Richard says he once had a massive hallucination and didn’t quite have control. He lost some wheels along the road. He can’t say more at this time.
There are people in the trees preparing for a thank- you tour. They are a mature group. They’re salacious people. No, change that to “Scooby-dooby-doo.”
One guy is a huge size. The skinniest is also the smallest. He can’t get off the lift. They all have brand- new shoes. It looks good for a getaway. They’re moving out over the stage. It’s a great before-and-after show. The people were born to be here.
The two orange trees on the left turned into a single giant horse. A part of the manicured shrubs turned into a pregnant woman—one without fornication because she couldn’t dance. But she could …
Robadia. Rub it in. Robots. Tonight there could be robots.
Richard says he had a couple of discoveries today. One of them involves butter. He couldn’t say more.
There was a family inside our house today. There was a father and a mother and two to four children— little ones. They wore distinctive clothing. They stayed in the dining room area 75 percent of the time.
Richard had an aggressive moment with them, and it was a mistake. A full lease tire. A basic butter design. They were angry when he told them they had gone far enough. It’s the fifth time they’ve been here.
“You’re making this up,” I say.
“No,” says Richard, “that would be immature.”
Today Richard has forgotten my name. He thinks it’s James Stephen Ping, his brother’s name. Then he calls me Damaged Portilla. It sounds so sexy, he says. He forgot his name too. “My name? How would I ever know that?” he says, baffled by the thought of it.
“I’m scared shitless,” he says. “What will it take to go from scared shitless to safe and secure? Six more inches and the penitentiary. I’m going to get some trouble off this. You’ll be able to hear me through transfer skills. It’s a one-minute walk to find out.”
Good bones in the body Pay what you can
Carry a lot home
Richard is using hyperbaric oxygen therapy (HBOT) to support his healing. It’s a large oxygen tank that can seat up to six people. He stays inside for an hour at a time. On Monday he told me it was very crowded. In addition to him and the two other patients inside, a family of five pushed their way in uninvited.
And on Tuesday, in addition to Richard and the one other woman inside, there were two annoying flies and two airplanes. This made for a stressful hour.
Ava: Why are you so blue today?
Richard: I tried to get orange, but it wasn’t available.
There are thirty people, and they’re looking for magis pentifores. This is exciting. We stalk the house, looking for them. Here’s the first one now. You’ve got to see this. There is a green one and a white one. They have no bearings or beepers. They can’t hear us, but they can speak with each other. They speak English, but we can’t hear them.
Look at the green grass, on the ground where it is supposed to be. Freedom tatem toe. They’ve got a deer. The guy with the black shirt has it. It’s probably in the back of the house.
We have to go get the Toetoa team. We don’t know who they are exactly, so it could be difficult. Oops, no need now—they are here.
Turn yourself over to a lord. I strongly suggest the turbo lite one.
This is the easiest place in America to look for the girl right now. She’s been victimized and has a child. She’s standing right here in the kitchen. If she has powers, they are for our city.
There is a man here again, a bad man. Dirt pack dolts. The people are under siege. My computer is an Etch A Sketch. Stop writing and look for the cylinder. Shut up; rub up. I want you to simmer and enjoy their jay.
I am like a trading stamp.
We’ve got to go; there is going to be a blast, and we’re going to die. We could have died yesterday, but they passed the money through today. How tricky is that? About $4 million dollars goes to the winner. We don’t know who won yet.
With car keys we can move from one place to another. Skip tumor; here we go. You got to take better care of your kids.
Ava: Try to close your mouth. It’s been gaping open lately.
Richard: Well, I’ve done a lot of walking.
The common area outside our balcony often turns into a stage. There are stage plays there with a lot of people.
Sometimes there are weddings. The white chairs near the pool can turn into brides, and the shadows from the orange trees house lots of people. They seem to be moved by the sun and the wind. The rooftops are snow-covered mountains.
Richard usually likes the theatre and concerts outside. When he tells the people to go away, they come sneaking back. They like living here.
You will find my book Parkinson’s: A Love Story with Dementia for Dessert on Amazon. https://www.amazon.com/Parkinsons-Love-Story-Dementia-Dessert-ebook/dp/B07K4RLC2D/ref=sr_1_1?ie=UTF8&qid=1542135434&sr=8-1&keywords=Parkinson%27s+A+Love+Story+with+Dementia+for+Dessert&dpID=41xS3edPH0L&preST=_SY445_QL70_&dpSrc=srch Your feedback and reviews are most welcome.
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