My husband Jay and I have been married for more than 50 years. We’ve had a satisfying and happy life, raising our family in Southern California. I worked in graphic design and, later, became a marriage and family therapist, while Jay was a professor of art at several community colleges and painted all his life. He also curated art exhibitions as a profession.
In 2009, I noticed Jay wasn’t himself. It started when he stiffened and was unable to complete a kayak lesson I surprised him with for his birthday. Soon, I saw 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.
We sought medical advice and Jay was diagnosed with Parkinson’s disease. Not surprisingly, this diagnosis immediately changed our lives and altered the course of our future.
Cats and Strangers: Unexpected Symptoms of Parkinson’s Disease
Several years after his initial diagnosis, when his neurologist was trying to find the right combination of medications to reduce the impact of the typical motor symptoms of Parkinson’s disease, tremors and In Parkinson’s, stiffness of the arms or legs beyond what would result from normal aging or arthritis. Some people call it “tightness” in their limbs., Jay’s Parkinson’s progressed in an unexpected way. He started seeing black cats all over the house that were not really there.
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 felt he needed to physically confront him, 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.
Jay often has trouble recognizing me. He looks right at me and asks, “Where’s Diane?”
Beyond seeing things, Jay experiences delusions. When I’m working at the computer, he is paranoid that someone (not me) is using it to access our financial information. The overwhelming worry causes me frustration and, sometimes, I leave the room to end the discussion. Occasionally, Jay’s brother or our daughter can convince him that our money is safe.
I now know that Jay’s hallucinations and delusions are the tell-tale symptoms of Parkinson’s disease psychosis (PDP), a common non-motor aspect of Parkinson’s disease. When Jay’s neurologist told me that more than half of all patients develop these symptoms, I was very surprised because I expected only motor control issues.
Jay’s doctor was impressed that we even reported the delusions and hallucinations because most 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 A broad medical term used to describe a loss of contact with reality that involves hallucinations and/or delusions. 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.
Parkinson’s Disease Psychosis and Me
Parkinson’s disease psychosis isn’t just about the patient, but also about the person who cares for them. I worry about leaving Jay alone, even to run to the grocery store, because his hallucinations and delusions are increasing in frequency. He gets anxious when he’s alone, so I call him on my cell phone, frequently, to reassure him that I’ll be back shortly.
Once, I left for just an hour and on returning, I discovered that Jay was in the hospital. Convinced he was late for a party, he had left the house and tripped down our concrete steps, suffering deep abrasions. A neighbor called the paramedics, who took him to the ER, which was distressing and embarrassing for both of us.
In order to look after Jay, I’ve dramatically reduced the time I spend maintaining my therapy practice and I spend much less time on my hobbies of gardening, yoga, and playing the cello.
It’s hard to ask for help with PDP. My adult daughter speaks or texts with me every day and comes down from the Bay Area when she can, but I don’t want to burden her. There are a few support groups in the area, but it is often hard for me to attend. Even though my friends understand that Jay is not well, they really don’t understand how his hallucinations and delusions impact us.
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. 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.