When a Mind Begins to Disappear: A Young Family's Journey to the Dark Side

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Financially, the impact has been disastrous, as Jim's construction career came to a permanent and abrupt halt. "So we had no income," he said. "We had to use all our savings. We lost our house, we lost our car, we lost everything that we worked for."

They now subsist on a fixed disability insurance and Social Security. They also lost their private health insurance. Medicare pays for some of Jim's Alzheimer's medications --such as Exelon and Namenda-- as well as the antidepressant Prozac. "But still," Michelle says, "the prescriptions are too much. So we have to get prescription samples from doctors to get by."

The Muellers say the disease has also affected the very nature of their relationship.

"Basically, instead of me taking care of everything, she does," he says. "We've switched roles. It's as if I'm not here sometimes. My wife has to make the decisions, because I can't."

But Jim reserves his greatest heartbreak for the toll the disease has taken on his girls.

"They know dad's sick," he adds. "So they don't push me like they used to. I do see them all the time, which is good. But it's not the same. They kind of leave me alone. But they're very smart kids... They've been very helpful and thoughtful, and they've given up a lot."

On Friday, Jim, Michelle, and their children are taking their story to New York City to speak at an Alzheimer's Foundation of America (AFA) conference, entitled, "Preparing for the Crisis: Diagnosing & Caring or People in Their 30s, 40s, & 50s with Young-Onset Alzheimer's Disease".

"In general, there is still such a fear and stigma surrounding this disease," notes AFA President and CEO Eric J. Hall. "So regardless of age, people are not talking to their doctor about it. And when the patient is young, some doctors don't even consider the possibility. So this conference -- and the Muellers -- are helping us get the word out, because getting people treated early is effective in helping to offset the symptoms of the disease."

"I want to encourage people to pay attention to other people," Michelle says. "And when they start noticing something peculiar, I would encourage them to mention it to their bosses and even make a phone call to their families and let them know that this is going on. Because I really believe that, had I had known what was going on at an earlier time I could've gotten Jim in sooner to the doctor, and I would've been able to make better preparations to take care of my family."