In 1983 President Ronald Reagan declared November Alzheimer’s Awareness Month. This year as we mark the 30th anniversary of this event, we have seen both hope and despair on the road to finding effective treatment for a disease that affects over five million Americans.
When President Reagan launched the national campaign to bring an end to a debilitating, fatal disease, he most likely never imagined that he would personally become a victim of Alzheimer’s. I know that Jim and I never suspected that this disease would cast its ugly net over our lives.
To be aware of Alzheimer’s, you need to take more than a casual glance at the disease. It is not a joke about forgetfulness that afflicts the elderly creating humorous moments of cute memory lapses. Memory is only part of the disease and often the first symptom that others notice.
Alzheimer’s is a brain disease. Beta amyloid plaques build up between nerve cells creating sticky clumps that damage the brain’s cells ability to communicate with each other. As if this wasn’t enough problems, tau tangles interfere with the movement of nutrients from food molecules and other key materials in the brain. Without these essential nutrients, brain cells die.
All this brain chaos, follows a predictable pattern in a brain diseased with Alzheimer’s. This progression can take up to twenty years!
At first, the disease doesn’t seem too bad. During the early stages the person with dementia has memory problems and issues with thinking and planning. When Jim was in the early stages, many people could not see the differences in him that I could. These changes were subtle.
One weekend we went to Manhattan, Kansas, to visit my son. We were going to drive downtown to get a pizza. As we drove down the street, I spotted Pizza Hut. “Turn left,” I told him.
“Which way?” he asked. That’s when I realized that he couldn’t tell left from right—at least not when it was spoken. I learned to point to the right or left.
Also, in the early stages, Jim developed aphasia. He was a voracious reader, but began to buy multiple copies of the same book because he couldn’t follow the story line and didn’t remember reading it a few weeks earlier.
Eventually, Jim progressed to a moderate or middle stage of the disease where his symptoms became more pronounced. His appearance changed a little as he moved into what I considered to be a more eccentric stage. He wore his denim jacket year round and decorated it with pins and the Veterans Week name tag from Branson. He wore dark sunglasses and used a cane. He just looked different and began to act more childlike. Jim was docile and agreeable—neither of which were normal traits for him. He became more silent, his speech hesitant. Jim had been a talented musician and could play any instrument with strings, and knew hundreds of songs. Eventually, he could barely play and could remember only a few songs and often repeated the same line many times.
Reality set in for me during the middle stage. Caregiving became a real challenge and I worried about Jim’s safety. He began to wander and managed to get away from me, other family and hired caregivers. We were fortunate and found him each time, but only after heart-stopping moments.
In severe dementia, most of the brain is seriously damaged and begins to shrink. Eventually, we placed Jim in long-term care. At first he paced constantly, and seemed unaware of most people around him. He stopped talking except for a few words. He had to have assistance with the most basic functions of life. Over time, he began to lose his balance and had to use a Merry Walker, and later a wheelchair, in order to remain mobile. He went through “failures to thrive” when he became gaunt and hollow-eyed.
Jim had dementia for ten years and from the beginning to the end, we did what we could to keep him physically healthy and happy. Some days, it felt like a losing battle, but it was always worth it.
So, during this Alzheimer’s Awareness month, I hope that awareness is as close as you get to the disease. I don’t believe anyone who hasn’t seen Alzheimer’s in a loved one can truly understand the all consuming nature of the disease. I know that I never had a clue about the reality of a disease that erodes lives and steals a loved one away one memory, one skill at a time. It is because of Jim that I understand the need to find effective treatment and a cure for this incurable life-stealing disease.
Congress passed on a unanimous basis the National Alzheimer’s Project Act which created the first National Alzheimer’s Plan. The plan is a strategy to fight Alzheimer’s and it is crucial that the proposed additional $100 million funding is included in fiscal year 2014 through the appropriations process.
Missouri Senator Roy Blunt is one of twenty-nine members of Congress appointed to a bipartisan budget committee to report budgets by December 13. I urge my fellow Missourians to ask Senator Blunt to remember Alzheimer’s and support the National Plan to Address Alzheimer’s Disease.
Copyright (c) November 2013 by L.S. Fisher