Like most of us, Larry Drain had a growing fear of dementia as he grew older.
“Being gone before I died seemed like such a tragic way to end life. Like everybody else I had either family members or friends affected either directly or indirectly and it has always been so cruel and so mean and such a tragic thing. I always hoped and prayed not me. Surely to God not me.”
Perhaps you heard about Larry and his wife, Linda, three years ago after they were forced to separate so Linda could continue to receive SSI disability payments and medical care for her seizure disorder, which was getting worse over time. Their plight caught the attention of national media during the controversy over Tennessee’s refusal to expand Medicaid under the Affordable Care Act.
CNN reported on their situation here.
Larry, who had worked as a disability counselor for more than 40 years, took early retirement to care for Linda when he turned 62, not knowing that this would throw their lives into chaos and jeopardize Linda’s healthcare benefits. Within months, she was living in subsidized housing in Oak Ridge. He was forced to move into KCDC housing in Knoxville and could barely able to afford to put gas in his car to visit her on weekends.
Things had gotten a little better this year because Linda has been able to move into an apartment in East Knoxville, just eight miles away from Larry. And he has been able to take a part-time job as a counselor in a senior employment program. They are hoping to be able to move into the same apartment complex. Having a job helps, Larry said.
“It’s 15 hours a week, minimum wage, but it puts gas in the car and helps me have something to eat, and I’m grateful for that,” he said. “But…”
He has always prided himself on his memory, but noticed that he wasn’t quite as sharp as normal, and mentioned it to his doctor, who ordered an MRI. He was concerned, but not overly worried.
“I thought at the time and still think she just wanted to tell me nothing was wrong and not to worry. What I was struggling with was what everybody struggled with eventually. Three days later I got a call. It is always bad news when they call. Good news gets letters.
“They told me that there were problems with the MRI. They thought I had a brain disorder called cadasil. They said it put my risk for strokes through the roof and over time destroyed your memory.”
He knew quite a bit about dementia – or so he thought – but he’d never heard of cadasil, so he did what any of us would do. He Googled it, and was terrified to learn that it is a rare, incurable condition that would put him at risk for strokes.
“There is no cure. No medicine. No nothing. You died. Unable to function, unable to do anything for yourself, you just die. It is a disease of the small blood vessels in the brain. They get thick and just don’t work anymore.”
His doctor referred him to a neurologist at the Pat Summitt Foundation, but he had to wait months for an appointment. She told him she wasn’t sure it was cadasil and recommended a genetic test that his insurance would probably refuse to pay for because of his age (69).
The test will cost $1,085, which might as well be a million bucks to Larry. So, he has started a GoFundMe to raise the money. All he can do is wait.
“I have learned that hope, no matter how strained or small it feels, is a real thing that makes a difference.
“When Linda and I worked on the Alzheimer’s unit we asked a patient there what her name was. She told us her last name. She said, ‘I don’t remember the other one.’ A friend came up. ‘Her first name is hope.’ A good place to start. A good place to end.”
Betty Bean writes a Thursday opinion column for KnoxTNToday.com.