Trying to See What’s Not There—My Husband’s Journey with Parkinson’s Disease Psychosis

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By Diane S., from southern California

We were two artists living a happy life in Southern California for more than 50 years. My husband Jay and I raised our daughter while I worked in graphic design and, later, became a marriage and family therapist. When he wasn’t painting, Jay was a professor of art at several community colleges and curated art exhibitions.

But in 2009, Jay couldn’t complete a kayak lesson I surprised him with for his birthday because his limbs were stiff. I began to notice that his hands were shaking and he told me that he had trouble concentrating at work. Jay made the decision to retire, a few years earlier than we both expected, because he felt too challenged by grading papers and maintaining his focus in class. After seeing a doctor, Jay was diagnosed with Parkinson’s disease, which immediately changed our lives.

Black Cats and Seeing Strangers

Several years after his initial diagnosis, Jay’s Parkinson’s progressed in a way that alarmed us. He developed hallucinations and delusions, which are the tell-tale symptoms of Parkinson’s disease psychosis (PDP), which I now know is a common aspect of Parkinson’s disease. At the time, I was very surprised and concerned because I thought that Parkinson’s disease only impacted motor control, such as tremors and stiffness. 

For example, Jay started seeing black cats all over the house that were not really there. Also, he would tell me about seeing groups of people in the living room, particularly at night. A man he dubbed “Big Boy” slept in our bed and, sometimes, Jay confronted him physically, which could be scary. On other days, he believed his brother was in the room with him, and they would talk the entire afternoon away.

Beyond seeing things, Jay experiences delusions. When I’m working at the computer, he is paranoid that someone other than me is using it to access our financial information. His overwhelming worry causes me frustration and, sometimes, I need to leave the room to stop the endless conversation about it. Only sometimes his brother or our daughter can convince him the money is safe and sound.

Jay’s doctor was impressed that we even told him about Jay’s delusions and hallucinations because most Parkinson’s patients and their caregivers don’t, possibly because it’s embarrassing to confide that your partner is acting “crazy.” To some there is stigma associated with seeing things that aren’t there and believing things that aren’t true. And who would guess that psychosis is part of a motor disorder? I certainly didn’t, but I’m glad I talked to Jay’s doctor because now we work together to manage the condition as best we can.

Unfortunately, there are no FDA-approved treatment options right now for PDP, though one may be on the horizon.

We Share the Burden of PDP

Parkinson’s disease psychosis doesn’t just affect Jay, but it also impacts me. I worry about leaving him Jay alone to run errands because his hallucinations and delusions are increasing in frequency. He gets anxious when he’s alone and so I check in with him frequently.

I try to have a sense of humor about Jay’s beliefs, but sometimes it can be hard to handle. In order to look after him I’ve dramatically reduced the time I spend maintaining my therapy practice and I spend much less time on activities I enjoy like gardening, yoga, and playing the cello.

It’s important to seek support if you are caring for someone with PDP. My adult daughter speaks or texts with me every day and comes down from the Bay Area when she can. I also participate in support groups, when possible.

That’s why I’m sharing my story. Parkinson’s disease psychosis is not just a burden for the patient, but also for the caregiver. Even though my friends understand that Jay is not well, they really don’t understand how his hallucinations and delusions impact us. I hope that by educating others about PDP, I can help people who are in the same situation realize they are not alone.

I look forward to the day when Jay and I can find better relief for this challenging condition.

For more information on caring for someone with advanced stage Parkinson’s disease, visit the National Parkinson Foundation’s CareMAP resource at caremap.parkinson.org

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