Caregiver Tips for Managing Parkinson’s-Induced Psychosis
My grandmother was diagnosed with Parkinson’s disease in 1995 and after my grandfather died in 2006, I became her full-time caregiver. I cherished the year we spent together, but when she developed Parkinson’s-related psychosis and experienced hallucinations and delusions, caring for her became stressful and frightening.
At the time, my 3-year-old daughter didn’t understand why grandma kept screaming at her to get out of the flood waters rising in our hallway, or why she talked to my daughter’s doll as if it were her own daughter and got upset when the doll would not eat. “Doesn’t she know that dolls don’t eat?” my daughter asked.
Grandma didn’t come with instructions on how to handle her when she was in this state, but over the years, I developed some simple rules to weather the storms and maintain peace.
In my neurology practice, few of my patients with Parkinson’s disease experienced psychosis, but those who did frightened their families more than themselves. To help myself and the families of my patients, I share these guidelines.
Involve a doctor. Talk to your relative’s physician about strategies for managing psychosis, including the possibility of changing his or her medication.
Don’t use reason. When patients are in a psychotic state, reasoning doesn’t work. Instead, try to anticipate your loved one’s needs before she becomes aggressive or belligerent. My grandmother had a persistent delusion that she was the one preparing dinner for the family, so I became an expert cook to avoid getting her upset when the meal she thought she prepared was not available to eat. If the meal was too elaborate to make, I would say it was ruined and I had to prepare something else, which worked to appease her. Another useful strategy was coloring, which helped to distract and calm my grandmother.
Remain calm. Take a deep breath and speak softly. Being confrontational or getting angry or frustrated only makes matters worse. After all, your loved one has no control of his behavior and may often not even know who you are. If you can’t speak calmly, walk away for a few minutes. This helped to diffuse things with my grandmother. Being calm also makes it easier to administer medications. If you are assertive or use harsh words, your relative may feel attacked and forced to defend herself, which may be traumatic for both of you.
Stay safe. Safety is a priority for everyone involved. Keep emergency contact numbers handy and don’t hesitate to call 911 if you or your loved one is in danger. Store dangerous objects or weapons—and keys—out of sight. Maintain open spaces to avoid falls and cultivate a soothing environment.
Get help. If you don’t feel up to the challenge of caring for someone with psychosis or are unable to handle the job on your own, reach out to family and friends. Or consider alternative care, such as a nursing home. Tap into all available resources to maintain your sanity and health as well as that of your loved one. Ask your relative’s physician for referrals to social workers and home health agencies.
Dr. Leon retired from her neurology practice four years after she was diagnosed with Parkinson’s disease. She lives in Nacogdoches, TX, and is the author of Parkinson’s Diva, which she self-published in 2015.