My mom and I recently entered a restaurant and while we stood behind the “Please Wait to Be Seated” sign, the hostess walked rapidly toward us, not letting her unusual gait slow her down. She approached us with a large, friendly smile that made her face glow.
“Two?” she asked. “How are you, today?” She struggled with the sentence.
“Fine,” I replied, “and how are you?”
“Busy!” she said, with that big smile that made you realize she wanted it that way. She was definitely busy, and as we ate our lunch, we watched her lead a steady stream of hungry people to their tables. She had found her niche. A job she was good at and took pride in doing well. It is encouraging to see people working despite an obvious handicap.
Many of us work because we have to, or as a woman I used to work with always said, “I’ve developed this really bad habit—I like to eat.”
With the Labor Day holiday, I couldn’t help but think about the 500,000 people with early onset dementia and how hard going to work each day can be for them. As dementia progresses, it erodes their self confidence as they struggle through the workday. Even getting to work can be a challenge once confusion sets in.
Unlike our hostess who had a lifetime to adapt to her challenges, people with early onset dementia find themselves in the frustrating position of losing skills that may have taken them to the top of their field. They may have skills and talents that identify their very personhood.
Jim dropped out of high school when he was fifteen years old. I once asked him how that was possible and he explained that his family followed the crops to find work. “We moved to a different state and I never enrolled in school again.”
Jim was a high school dropout, but he was an intelligent person. Later he would get his GED, but his forte was working with his hands. Jim never needed instructions to take apart and repair anything mechanical. Early in the disease when Jim was home alone while I worked, I never knew what he was going to try to “fix” during the day. One night I came home to find our VCR was completely taken apart and scattered all over the living room floor.
People with early onset dementia sometimes hide the diagnosis from their coworkers and bosses to remain in the workforce until the disease progresses to the point they cannot continue. Alzheimer’s is a slow process and depending on the proper regimen, it is not always necessary for a person to quit work immediately. It depends on the job and how accommodating the employer is. Perhaps a job can be simplified, or a person can be shifted to a less demanding position.
Each family struggles with what is best for the person with dementia. He may stubbornly refuse to admit he cannot do his job safely. I talked to a woman whose husband was a heavy equipment operator. He was the boss of his family business and was still working although his dementia was advanced. His son worked with him and knew that Dad was jeopardizing their business reputation and endangering both their lives on a daily basis.
Losing a long-term job can be emotionally and financially devastating for a family. When a loved one has dementia, the caregiver may have to quit work too. Early onset dementia takes a toll on every member of the family.
During the Labor Day celebration, take time to pause and think about all the people unemployed because of Alzheimer’s—those with the disease and those who care for them. It might make Tuesday morning seem a little brighter if you are fortunate enough to have a job. When someone asks how you are, you might reply “busy” and smile about it.
Copyright © September 2010 L. S. Fisher