RENO, NV - In a basement room Thursday morning, Alzheimer's patients and their caretakers gathered to share the stories of their lives.
One by one they rose to tell the same story. The awful discovery that a loved one had dementia. The often lonely struggle to care for someone whose memory and personality were slowly slipping away.
It's a story Lue Olthoff is living every day since her husband Nathan's Alzheimer's became evident. It happened on a family trip from Virginia City to Tahoe. They went one way, Nathan went another.
When they flagged him down, they realized he didn't know where he was headed. He was confused. She took him to their doctor. The diagnosis was Alzheimer's.
"I was scared, she remembers. "I was scared for him and I was scared for us because I didn't know how to handle it."
In time she found what help there was including education, a day break facility that gives both her and her husband a few hours respite each day, but there are unmet needs like affordable care.
When family members suggested she find a home for Nathan. She found one that cost $7,000 a month. She couldn't afford it.
There were others for about $1,600, but there were issues of cleanliness.
"I'm caught between a rock and a hard place because I can't afford this one and I don't want to do this one because it's not clean enough."
Most of the others had similar stories to tell. For them there were no surprises, but also at this town hall there were legislative staff members, who will receive the draft of a state plan from the task force hosting this meeting.
It was good, task force members felt, for them to hear these stories first hand, but they know their suggestions may meet the cold reality of the state budget.
"They'll come back with 'there's no money,' says Task Force member Gini Cunningham. "So it's funding for respite, funding for education."
Still, Cunningham says there are changes that would make a difference. Requirements for doctors and hospitals. Giving DMV the directive to pull driver's licenses, removing that responsibility from the caretakers. Besides, she says, it's important to make a start.
In the meantime, caretakers like Lue Olthoff will continue to care as best they can for a loved one who has all but slipped away. The emotional disconnect, she says, is the worst.
"I married this sweet man. I don't mind dressing him, making sure he gets his shower, brushes his teeth, but the hardest is he's not my husband. We've been married for almost 30 years and he's not."
The Alzheimer's Association of Northern Nevada will hold a fundraiser walk September 29 at the Sparks Marina. Registration begins at 8:30 am.