How I fear the Parkinson’s dementia my grandpa experienced

I’m not the only person in my family to have experienced Parkinson’s disease. About 25 years ago, my maternal grandfather was diagnosed with it.

His was a more typical diagnosis, coming in his 70s, unlike my diagnosis, which came in my 30s. I don’t remember many of the details of his day-to-day struggle, because I was across the country at college, starting my career, and didn’t take time to visit enough.

My grandpa was lucky in that he had terrific care. My mother had passed away when I was in high school, but my two aunts made sure that my grandma and grandpa got to stay in their home as long as possible.

Grandma was also having memory issues at this time. But they had nurses and caregivers that came in four or five times a day during the week for meds and meals, and my two aunts selflessly traded spending their weekends with them for years, doing laundry, paying bills, and performing all the other thankless chores that come with extended caregiving.

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Grandpa did end up in a nursing home after Grandma died, but they were able to be together right until the end of her life. His nursing home was terrific, and he was well cared for. My aunt Susan used to say, “Look at his glasses. If his glasses are always clean, someone is paying attention to the details.” Despite his excellent care, one thing that scared me then, and terrifies me now, was the Parkinson’s-related dementia and psychosis he experienced.

I wasn’t there for any of his significant episodes with those conditions, and frankly, I’m not even sure if they called them that back then. But I did hear stories from my aunts about these experiences.

Late-life psychosis

My grandpa was a dairy farmer. His father had started a dairy to help keep his four sons together during the 1930s. Grandpa loved his cows, and he ran the herd that supplied much of the milk to make their regionally famous ice cream and other products. And lucky for him, many of his bouts with Parkinson’s-related psychosis were happy.

Sure, he’d lose contact with reality, but for him, that mainly took the form of happy hallucinations of being in the barns with his cattle, or talking about milk production with his brothers. If he wasn’t 100% with it, at least he was someplace happy and safe.

But on occasion, his dementia and psychosis took a dark turn, and he would rant and rave, often looking for Grandma, or yelling and accusing her of running off with someone else. It was sad and scary to see his deep feelings for this woman, whom he’d loved since he was 14 years old, turning against him. It was frightening to think of this big, strong dairy farmer who had raised four children, helped his community, and loved his family, being so lost.

My empathy for my grandfather has now become even more real. As I’m nearly two years into my second decade with Parkinson’s, I wonder if that’ll happen to me.

A Bionews article reported on a study from last year that showed that Parkinson’s-related dementia may not be as prevalent as we’d thought, and it may take longer to show up than was first reported. The article on the research said that “previous studies have found that about four in five Parkinson’s patients will experience dementia within 15 to 20 years after receiving a diagnosis. But those studies were published more than 20 years ago and had limitations.”

Researchers estimated that “about half of Parkinson’s patients will develop dementia 15 years post-diagnosis, and by 25 years post-diagnosis, about 90% of patients will have dementia. These rates are generally lower than previous estimates.”

While that’s good news, the idea of having Parkinson’s-related dementia or psychosis is still terrifying to me. I don’t want to lose touch with reality or be unable to distinguish what’s real. I don’t want to put my friends and family through a terrifying ordeal. I don’t want to be out of control of my mind, after already losing so much control of my body.

But all I can do is learn what I can about it, take care of myself, and not get too caught up in the “what if?” I’m here now, so let’s enjoy life to the fullest. And if it does happen to me, maybe my dementia will take me to the barns with Grandpa and the cows.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.