Fighting Lewy body dementia together

TROY, Mich. – For Robert Doheny's mom, Patricia, it started with a little trouble walking, a little trouble understanding things. But it didn't stop there. 

"She forgot almost how to cook," said Doheny.  "That's not Mom. Mom did that for years."

It took three years and multiple doctors and tests to finally get an answer -- Lewy body dementia.

"My ma goes, 'Why me?'" remembered Doheny. "You see your mother crying and asking God, why this is happening to her. That really hit me, really hit me hard. And when that happened, I knew she knew what was going on and knew what was happening."

It was a devastating diagnosis for the whole family.

"She was just always there for us. She was our teacher, she was everything for us. She was always there," said Doheny.

Lewy body dementia is not rare. It affects an estimated 1.3 million Americans, making it the second most common type of progressive dementia, second only to Alzheimer's disease.

It's not clear what triggers it, but the disease causes protein deposits called Lewy bodies to develop in nerve cells in the brain. The resulting symptoms can include problems with memory and thinking, confusion, sleep difficulties, and depression. Patients may also suffer hallucinations, movement problems similar to those of Parkinson's disease, and falls. Because the symptoms can be caused by a variety of conditions, Lewy body dementia is initially diagnosed as something else nearly 80 percent of the time.

"She had falls, she had slips. We thought she broke her hand in a fall but she didn't," said Doheny. "She had the deliriums, tremors, the delusions."

But for Patricia's son, the most heartbreaking symptom of all was something else.

"The blank face, when you're talking to somebody and there's no one there anymore, but, in the back of your head, that's your parent. That's your mom, your dad, your cousin, your uncle."

It's been one year since Patricia lost her fight with Lewy body dementia. 

Just before she died, Doheny made his mom a promise.

"I told her that, I will do everything I can to help other people, because we didn't have it," said Doheny.

The result of that promise is the Metro Detroit Lewy Body Dementia Support Group. Doheny started the group in January. They meet each month at Troy Beaumont, giving each other a sounding board and a sympathetic ear. 

"I get overwhelmed, and I cry every day. He gets very bad at night," shared one member.

"It's a hard task for everyone," chimed in another. "We're all exhausted.  Everyone at this table is exhausted."

Nancy Young and Louise Labie are part of the group, sharing their struggles to care for their father and husband.

"Telling the stories back and forth, and everything we go through and stuff, it's just very, like, 'Wow we're doing that too. What works for you and what doesn't work for you?'" said Young. "We're not alone. Now we're all together. And we can get a hold of somebody if we have to."

"I just didn't know there was so much of it out," said Labie.  "In some many ways, it helps me go home and think about it, relax."

The group shares their heartache freely.

"You know, he's mad about it, but you know, it's okay, he can be mad. I don't blame him," shared a granddaughter. "I don't blame him. His whole life has been the rug pulled out from underneath him."

But they also share their hope.

"There are joys every day," said one wife. "And even when he was at his worst, there are joys. They might be just a moment, or someone might call you and just to say they love you.  I mean every day, you have got to look at the joys because they are there."

It's those moments that push Doheny to do more. He was voted onto the Board of Directors of the Atlanta-based Lewy Body Dementia Association and he plans on expanding nationally and networking internationally.

He's happy to offer others the support he wished his family had had.

"We're all a family now, we've all been there," said Doheny.

And what would his mom think of all this?

"Proud, happy, shocked," said Doheny. "I get a hug from her. When I do this, I get a hug.  I know she's watching.  I know she's watching everybody in this room." 

Resources to learn more about Lewy body dementia: