THE BLOG

The Alzheimer's Reality: A Nation in Diapers

07/18/2013 01:56 pm ET | Updated Sep 17, 2013

My mother Peg did everything right in terms of controlling risk factors yet today suffers from advanced Alzheimer's. She worked as a nurse until retirement and enjoyed solving puzzles of all sorts. She walked her golden retriever two or three miles every day. The energetic woman who was never larger than a size 6 didn't smoke and didn't drink. She wrote a cookbook about healthy eating.

"There really is nothing that will prevent or slow the progression [of Alzheimer's]," said Dr. Joshua Chodosh from the David Geffen School of Medicine at UCLA at last year's Alzheimer's Association International Conference. He also noted that 50 percent of dementia caregivers "meet criteria for a major depressive order." This year's Alzheimer's conference opened on July 13 and we're still losing the battle. Alzheimer's disease strikes one more American every 68 seconds.

Like many diagnosed with Alzheimer's, my mother was angry and hostile in the early phases. Four years later, she's helpless and docile. The woman who managed a busy medical practice has no idea what day or year it is. She can no longer distinguish between hot and cold, or wet and dry. Thirst is a concept beyond her understanding. She wouldn't drink fluids or eat dinner if I wasn't there to help her. She doesn't know how to get dressed and has trouble figuring out how to lie down on her bed. My mother is in diapers around the clock and needs to be changed in the middle of the night. I've learned to put Peg on the toilet every two hours and hope for the best. This is the Alzheimer's reality. It's a chilling legacy I would never want to leave for my children.

I live in daily terror that I, too, will succumb to this disease with no cure but with a guarantee of gut-wrenching stress and exhaustion for everyone involved. If this sounds harsh, I need only to return to last Sunday. My mother prided herself on sterile nursing protocol but Alzheimer's prevents her from comprehending that she has soiled her diaper, her pants, and her chair cushion. While getting her changed, excrement covers her hands and her feet. I barely contain my gag reflex until I remind myself that Peg has consistently good care from me on the weekends and from three compassionate women who cover the feeding, bathing, and diaper-changing shifts while I'm at work. They treat my mother with great dignity and that keeps me going for my next shift. With lean staffing everywhere, few nursing homes can offer this level of personal attention. Yet I also recognize the unrelenting toll on caregivers, which we have yet to address as a nation. I salute the unsung heroes who provide dementia care seven days a week with no escape from a disease that destroys the essence of what makes us unique and human.

Alzheimer's today plagues 5.2 million Americans and an additional 15.4 million unpaid caregivers. Despite the dedicated efforts of researchers across the globe, there is no cure on the horizon for the sixth leading cause of death in the U.S. In the next few decades, Alzheimer's health care is expected to cost $1.2 trillion per year.

We're racing the clock against a disease projected to strike 7.1 million Americans by 2025 and 13.8 million by 2050. Neither healthy living nor a comfortable portfolio offers protection from an affliction that has felled executives, generals, newscasters, athletes, performers, and everyday folks like my mother. Finding a cure all comes down to money. Federal support is just one piece of the arsenal needed to combat a disease that will incur an estimated $203 billion in health care costs this year alone. The USAgainstAlzheimer's Network highlights the economic imperative: "For every dollar the federal government spends today on the costs of Alzheimer's care, it invests less than a penny in research to find a cure."

Alzheimer's has stolen my mother's ability to voice an opinion. One in three seniors will die from a form of dementia so every one of us needs to speak for those silenced by this undignified killer. Alzheimer's is an epidemic. It urgently requires the level of funding that has made a difference for those afflicted with cancer, heart disease, and AIDS. We also need major help from the private sector. If there's to be any hope of finding a cure in our lifetime, we need billions of dollars for more research. This is our war to wage, and one we can't afford to lose.

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