For John MacInnes, the beginnings of Alzheimer’s disease were startling. The retired executive and former pastor in Bloomfield Hills, Mich., first realized something was wrong as he was delivering a PowerPoint presentation to a community group. “Then in mid-sentence, I had problems,” he says. “I had a well-rehearsed script in front of me, but I couldn’t get the words right, couldn’t get them out. That kind of shook me up.”
Memory loss and impaired thinking are hallmark symptoms of this disease. But MacInnes was fortunate in one respect. He was diagnosed at an early stage, which enabled him to take steps to cope with memory loss, organize his daily life, and plan for his future by making his express wishes known to loved ones who can carry them out.
Sundowning, or sundown syndrome, affects some people who have Alzheimer's disease and dementia. People with dementia who "sundown" get confused and agitated as the sun goes down -- and sometimes through the night.
Sundowning may prevent people with dementia from sleeping well. It may also make them more likely to wander. Due to the stress it puts on caregivers, sundowning is a common cause of caregiver burnout.
Shortly after that unsettling presentation, MacInnes, who was 80 years old at the time, consulted his doctor. He was having trouble managing multiple tasks, something he had always been able to do well. He also became confused while driving in new areas. After being evaluated, he learned that he had Alzheimer’s, a progressive brain disease that destroys brain cells and causes memory loss, confusion, thinking problems, and personality changes.
Like many who receive an Alzheimer’s diagnosis, MacInnes felt fear and sadness. “I went through that struggle for several weeks, feeling sorry for myself and asking why did this have to happen to me? In the middle of that, I wrote myself a little poem -- something I had never done before -- and I titled it, ‘ALZ Is Not About Me.’ Looking back, that’s probably the point when I began to concentrate on leaving self-pity behind me and focusing on learning more about Alzheimer’s.”
As he writes in his poem, “My shining days may be dimming, for sure, but life for me is not done/May God grant me peace, whatever those sunset days may bring.”
Despite his new attitude, the gradual loss of independence has been frustrating, says MacInnes, now 82. For example, he can no longer drive long distances, but must limit himself to short drives to familiar places.