You have dementia, probably of the Alzheimer’s type … thus begins Dr. Richard Taylor’s journey to
the end of his life, documented in his essays, at least as long as his mind will cooperate. Dr. Taylor, PhD., psychologist and author, was diagnosed in 2001 at the age of 58...he had come down with early onset Alzheimer’s. Richard heard these words one year and one month after his daughter had said there’s something wrong with dad. He began to write essays to help him understand what was going on inside. This abstract provides a glimpse into Richard’s essays on the world he now lives in.
You have dementia, probably of the Alzheimer’s type. The comment came from his physician after a year long battery of neurological tests, blood letting, and spinal taps, including answering 102,000 questions (by actual count). The questions included finding out if Richard licked walls covered in lead-based paint and if he remembered the 17th president of the U.S. The Alzheimer’s diagnosis was arrived at based on the presence of a series of symptoms - symptoms that cause similar results in observed post-mortem conditions of sufferer’s brains.
The disease apparently randomly destroys various cognitive processes and each person is unique in his or her response. There currently is no cure. A kind of plaque builds up on the brain causing it to malfunction is various ways. Richard describes his experience as sitting in his grandmother’s living room looking at the world through her lace curtains. As a gentle wind blows them around the patterns he sees change. There are knots in the curtains he cannot see through. Sometimes vision and memory clear; sometimes he is disconnected or completely unaware of what’s on the other side of the curtains. Richard describes his memory as a series of rooms where memories reside…rooms with labels of what memory is supposed to be inside. Sometimes, the room he goes to for the memory contains the memory under the proper heading; sometimes the room is completely empty; sometimes the room is mislabeled or has no label at all.
Some folks, upon meeting Richard, say they can’t believe he has Alzheimer’s. You see, apparently in the early stage of Alzheimer’s the more intelligent a person is the more the person can cover up its symptoms – figure out work-arounds…and Richard is very intelligent. However, the impact of the disease can be seen in something as simple as watching him tend his garden. As he works with his passion he becomes distracted and doesn’t finish parts of the work and doesn’t know he hasn’t finished. With regard to his writing, what used to take him minutes to write on his computer now takes hours.
What is it like to have Alzheimer’s? There is no universal answer because there is no meaningful “average” Alzheimer’s experience. Richard says having Alzheimer’s is going to lots of doctors; taking lots of pills, hearing his son say he can’t be alone with his five-year-old granddaughter – one of them might wander off; hearing his wife wistfully say he isn’t the person she married; being treated like a child when he isn’t; hearing a receptionist in a doctor’s office who forgot his name say she has a touch of Alzheimer’s today; hearing a neurologist tell his wife don’t come back until Richard pulls down his pants and pees in the middle of the living room!
Richard says don’t keep repeating your words in hopes he’ll get it; don’t talk louder in hopes he’ll hear you; don’t expect him to understand what he obviously can’t. Please stop treating him like a child. Don’t talk about him in the third person in front of him. Figure out ways for him to do more, not less.
Richard talks about the up side of having Alzheimer’s. He has more family interaction, both by phone and in person. His relationship with his wife has a developed a higher level of intensity of closeness; he sees his grandchildren much more often; he takes longer walks with his dog; he has become a better teacher; he is more prompt in responding to his email; and he’s going to take some trips he’s postponed in the past. He has learned the difference between sympathy and empathy and can accept both. He gives more of himself and most times expects nothing in return.
Richard says that for a large percentage of those growing old, dementia is inevitable. There are more than 24 million people in the world with Alzheimer’s, let alone those with one of the 90+ other diseases of dementia. With an average of 2.7 caregivers per Alzheimer’s sufferer, there are more than 64 million dealing with the disease now. As the baby boomer population ages it will seem like an epidemic of dementia will suddenly spread through our families and friends. He says it is time to act to get attention and help for those with Alzheimer’s and other forms of dementia – the most ignored segment of our population. Act for yourself, your generation, and future generations.
The last chapter of Richard’s book lists web resources he has assembled from the sites he has visited since being diagnosed. Get a copy of his book, read it, get involved. Richard can be contacted at richardtaylorphd@gmail.com. Believe me, he’ll answer your email. He answers mine.