Imagine a Land Free from Alzheimer’s

Our Walk to End Alzheimer’s group participated in the annual 4^th of July Parade. My friend WyAnn had prepared a sign that said, Imagine a Land Free from Alzheimer’s. Along the parade route, there isn’t much time to think of anything, but after the excitement died down, I couldn’t stop thinking about that sign.

What if our land was free from Alzheimer’s? Think of how much that would impact the 5.8 million American families who have a loved one with Alzheimer’s disease. Imagine what a wonderful world this would be.

Our memories, personalities, and skills are the most basic part of our lives. Yet, dementia steals those precious qualities from people we love. Our mothers become our daughters. Our fathers become our sons. Our spouses become our children as we love them and care for them. Collectively, we American families provide 18.5 billion hours each year taking care of our own.

From personal experience, I can tell you that being a primary caregiver for someone with dementia is not for sissies or the squeamish. In the early stages, my caregiver duty was to keep Jim on track. I went to the doctor with him and kept track of his medication. His skill levels began to diminish. A man who once had the ability to tear a car down and put it back together would dismantle a vacuum sweeper or a VCR, but couldn’t reassemble the parts.

In the middle stages, caregiving was more intense. The day started with helping him bathe and get dressed for the day. These jobs became harder as the disease progressed, and he needed more help with toileting and incontinence. Jim only needed about four hours sleep, and I couldn’t sleep with him wandering around the house, or worse yet outside in the dark. His wandering was dangerous and along with other behavior problems, it was obvious he needed a safer environment.

Caregiving doesn’t end at the nursing home door! Some caregivers are comfortable with providing emotional support, interacting with staff, and supervising care. My comfort level was to make sure Jim was clean, fed, and comfortable. For the five years Jim was in nursing care, I, or a member of our family, checked on him almost every day and assisted with his care.

The clock is ticking. Every 65 seconds another person in our land begins the Alzheimer’s journey. Imagine if that didn’t happen, or if it did, it could be cured. Well, if wishing and hoping could make it happen, dementia wouldn’t exist.

According to the Alzheimer’s Association, Alzheimer’s will triple in a generation if we don’t have a medical breakthrough. We can’t have a breakthrough without research. When I first went to DC to advocate for Alzheimer’s research funding, NIH had budgeted less than $500 million for research. I know that to you and me that sounds like a lot of money, but it is barely a blip on the radar of research possibilities. Research was stalled at a time when it should have been accelerated. If you don’t see that, look at how our country used the necessary resources to find an effective treatment for HIV and AIDS. HIV/AIDS was once the inevitable death sentence that Alzheimer’s is today.

It has taken us two decades to reach a level of research funding that could bring about a positive result. Now, we need to be relentless in advocating for research dollars. We cannot afford to wait another two decades for a cure. The clock is ticking.  

Imagine if our land was free from Alzheimer’s disease.