Married for 40 years, I cared for my husband who developed Parkinson’s Disease Psychosis. Photo courtesy of Sidney Hollingsworth.
Testimony volunteered by B. P. of Albuquerque, New Mexico, in hopes that it may be of help to Parkinsons patients, their caregivers, and doctors.
For over 9 years, my beloved husband and I had been successfully battling his slowly progressing Parkinson’s disease with medications and exercise. In October 2013, we had a big party to celebrate his 90th birthday. Three months later, he started having auditory hallucinations, listening to the same music played over and over again, all day long. Then came the visual hallucinations. At first they were benign, but by mid-year they terrified him. Waking up at night and not recognizing his surroundings, he would think himself lost in scary circumstances such as being in a foreign country or in mountains, edging his way along a precipice. Though our marriage of 40 years had transpired in loving harmony, he started having detailed and recurrent hallucinations that I was being unfaithful to him. Once, in the early hours of dawn, he made me call the police to save us from a gang violent thieves that he was convinced were hiding in the garage.
When it became clear that he had developed Parkinson’s Disease Psychosis (PDP), his physicians tried a number of medications to deal with the hallucinations, but none was effective. Soon, my husband’s condition required round-the-clock caregivers. I was unable to celebrate his 91st birthday because he was too detached from reality. Finally, I was advised that he needed to be in a nursing facility with a dementia unit. Such beds were scarce, and it took my daughter and me some time before we were able to find the place my husband would spend his last days. He died in December 2014. It broke my heart that my wonderful husband, who deserved to die in his own bed surrounded by his loving family, was not able to do so because PDP hallucinations made it impossible to keep him at home.
About Parkinson’s Disease Psychosis: Parkinson’s Disease Psychosis is a debilitating disorder that commonly consists of hallucinations and delusions. Hallucinations are more common and often are visual. Research has shown that delusions often involve suspicions of spousal infidelity or other paranoid themes and are often disturbing and debilitating to patients. PDP substantially contributes to the burden of Parkinson’s disease and deeply affects a patient’s quality of life. Parkinson’s Disease Psychosis is also associated with increased caregiver distress and burden, nursing home placement, and increased morbidity and mortality.
As many as one million Americans live with Parkinson’s disease, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease. Approximately 60,000 Americans are diagnosed with Parkinson’s disease each year, and this number does not reflect the thousands of cases that go undetected.
I’m hopeful that soon there will be an FDA approved treatment for PDP so that other families can find the help that I would have treasured for my own husband.