She looked at me with tears in her eyes, and I said, “Isn’t it nice to love someone so much that saying goodbye is so hard?” Her face relaxed, as if through the disease she was able to grasp a moment of clarity. I didn’t know it yet but that would be the last time I saw her in person. My grandma, like most grandmas was the winner of Best Grandma of All Time; with the painted birthday mugs, personalized Christmas ornaments, and cards to prove it.
She died from a form of degenerative dementia called Lewy Body Dementia (LBD), which is the second most common form of dementia after Alzheimer’s disease. One of the hardest parts of LBD is getting a correct diagnosis. Unlike other diseases, there are three common presentations that often result in LBD being misdiagnosed as Parkinson’s disease, Alzheimer’s disease, or neuropsychiatric symptoms. This is critical because LBD affects the whole individual. From the way their brain works, how their body moves, and daily routines.
October is Lewy body Dementia Awareness Month. Although this degenerative disease is a terminal one, education, support, and advocacy are some of the most critical and accessible ways we can help.