Ava Butler, a member of The Michael J. Fox Foundation community, shares what her husband’s diagnosis of Parkinson’s disease and Lewy body dementia has taught her — which she takes to heart at home, and in her career.
Lewy body dementia (LBD) is not as well-known as Alzheimer’s, but it is the second most common form of dementia. More than 1.3 million Americans are impacted by LBD, but little public attention is paid to this lesser-known disorder.
Lewy body dementia a progressive neurodegenerative dementia closely associated with Parkinson’s disease. My dear husband, Richard has both. (Editor’s note: LBD is a progressive neurodegenerative dementia that is also a form of Parkinsonism, meaning that it includes some of the motor symptoms of Parkinson’s disease, too. While most people with Parkinson’s do not also develop Lewy body dementia, studies suggest that having Parkinson’s increases your risk.)
Persistent and recurring visual hallucinations are often an early symptom of LBD. This was true for 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 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 insight to those whose lives are also impacted by LBD. Here are examples of what Richard has experienced as written from his own words:
Occasionally people come in the house at night, but they go away when we turn on the lights and look around for them.
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.
Today Richard has forgotten my name. He thinks it’s James Stephen Ping, his brother’s name. Then he calls me Damaged Portilla. He forgot his name too. “My name? How would I ever know that?” he says baffled by the thought of it.
“You’re making this up,” I say. “No,” says Richard, “that would be immature.”
At the time, we knew he had Parkinson’s, but knew nothing about LBD. At first, 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:
- 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 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 secure. However, if I’m part of the hallucination and am perceived to be involved in some conspiracy, I need to back off and give him 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. 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 leave him alone.
- Walk slowly towards the hallucination and tell the people it 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 stress will make things worse.