By Sherry Sharp
“The days are long, the nights even longer.” At least this is how I felt while watching my husband deteriorate over the years as he struggled through Alzheimer’s disease.
At only 63 years old, Richard was younger than the average victim of Alzheimer’s. I say “victim” because Alzheimer’s seemingly creeps into the human brain out of nowhere, without warning, and relentlessly attacks.
Currently, Alzheimer’s disease affects more than 5.5 million people in the United States alone. And besides each victim, it also affects the families who love them, and caregivers by the multitudes. Giving the statistics is easy; telling the personal stories hidden in the numbers is much harder and heart-wrenching.
However, I would like to share some of our story.
Richard Sharp was not only my high school sweetheart, husband, father of our two daughters, and grandfather of our four precious grandchildren; he was the smartest person I have ever known. He made the world around him a better place. Richard loved his family, his work as a businessman, and his local community of Richmond, Virginia.
When Alzheimer’s disease raised its ugly head, he was forced to abandon everything he had worked so hard to accomplish. Those of us who loved him could only watch as he tried to “hold onto himself.”
With access to some of the brightest medical doctors and finest institutions working on Alzheimer’s research in the world, we learned that in the 21st century, still so little is understood about the human brain.
As harsh as it sounds, less than 10 years ago the only advice given to someone diagnosed with Alzheimer’s was to “go home, get your papers in order, and wait to die.”
How is it that people like Richard — who have made such a positive impact on the world — are expected to silently disappear from it when Alzheimer’s is suspected or diagnosed? While it is not a known communicable disease, the effect of Alzheimer’s is that it spreads fear, and fear leads to isolation for everyone at its mercy.
As Richard’s wife, I dearly loved the man with whom I had spent most of my life. As his primary caregiver, I felt tired, frightened, and helpless to meet all of his needs.
After several years, the mounting everyday challenges revealed it was time to reach out for more help; finding that help proved to be a challenge in itself. I did hire a young man who was reliable, responsible, and attentively cared for Richard.
Several other caregivers rotated in and out but lacked the necessary skill set to provide for the widening gap of needs in someone with Alzheimer’s disease. Still, at the end of each day, I watched helpers leave our home, and would tear up at the thought of being left alone. I wanted to be strong, but, feeling so inadequate, I found another useless companion: guilt.
No one is prepared for the onslaught of dementia, especially the nonprofessional who is responsible for administering care. We do our best at the moment of need, which leaves little time for rational thinking.
Having an approachable team of professionals is invaluable. For this reason alone, I am forever grateful for Richard’s team from Johns Hopkins who helped me stay focused in moments of despair.
Although time was running out for Richard, he continued to live his remaining years as he lived the rest of his life: trying to fix what is broken, and facing each day with courage.
On June 24, 2014, with his family by his side, Richard’s battle against Alzheimer’s ended. Together, the two of us shared almost 50 years of beautiful memories. Now, I was left to carry these memories alone.
All things surrounding Alzheimer’s disease makes me wish I’d never have to think about or hear the word again — but this is not possible. With two-thirds of people living with Alzheimer’s being women, my daughters and granddaughters are at high risk. Because Richard was one of four males in his family to die from Alzheimer’s, my grandsons are also at risk.
As a person of strong faith, I believe with all of my heart that the best is yet to come; this includes finding a cure for Alzheimer’s disease sooner than later. My mission is to keep fighting until that day arrives. Then, together with the rest of humanity, we can celebrate one less monster in our midst.