Lewy Body Dementia: One Couple's Story

Twenty-some years ago, Sue Lewis gritted her teeth and walked into the VFW (Veterans of Foreign Wars) bar in her rural West Virginia town. It wasn’t her kind of place, but she had to pick up a girlfriend there because they were going to the movies.

Harry Lewis spotted her from across the room, and decided he wanted to get to know her. He bought her a drink. Not long after, they were married.

Harry and Sue Lewis

“On the surface, we were opposites,” Sue says. “He quit high school to go into the Navy, and he has very traditional values. I have a master’s degree in social work and am an old hippie. I grew up in Michigan in a house with six bathrooms; he grew up in West Virginia and had an outhouse. But I figured out, hey, this guy is intelligent – he stretched my thinking. We fed each other intellectually. We were so interesting to each other.”

Fast forward to the year 2000, when Harry’s mother passed away. Harry was out on disability because of back problems, and had been his mother’s caregiver for years. When he started stuttering and seemed anxious and depressed, Sue figured it was the stress of long term caregiving. But when he had five car accidents in one year, and couldn’t find his way around the town he grew up in, she knew something was wrong.

“I noticed it most in his driving,” she says, “but when I think back, there were other signs. He had stopped doing his sister’s taxes, and his handwriting got very small.”

“This is not the guy I married,” Sue said to herself. She made doctor’s appointments for him. He cancelled them. She finally got him to a doctor, and at 59, Harry was diagnosed with Alzheimer’s. Sue was 51.

A few months later, Harry’s doctors changed his diagnosis to dementia with Lewy bodies. Check out Part 1 of a Tangled Neuron report on Lewy Body dementias to find out why these dementias may deserve more attention.

Comments

[Don Moyer]

Mona, it's amazing how many times I've heard similar stories. I'm also amazed how often the well spouse then devotes their life to helping manage the challenges. It speaks very well for our species. Don