Author, Alzheimer's Patient Gives Inside Look at Disease

Richard Taylor lives for today. He cannot remember yesterdays. Nor can he plan for tomorrow.

The former psychology professor has Alzheimer’s.

“People with dementia live in a very foggy today,” the author of Alzheimer’s from the Inside Out said Wednesday at Drendel Ballroom in Sun City Huntley. “It’s partly yesterday. It’s partly today and there are parts neither yesterday or today.”

“You can’t understand what’s going on so you make it up,” he said, explaining that false memories become real ones.

Taylor is a renowned speaker who gives audiences insights into what it’s like to live with Alzheimer’s.

His visit was sponsored by Family Alliance in Woodstock. The agency has an adult day care center for people with dementia and offers Alzheimer’s support groups for care givers.

Taylor, 69, began forgetting things and acting differently but neither he nor his wife took note. It was his daughter, visiting home for Christmas, who noticed the changes and early signs. 

“People cover up for you and you cover up for yourself,” Taylor said. “No one wants to have an Alzheimer’s moment. No one wants to appear to be getting older. The truth is all the symptoms of Alzheimer’s or dementia you’ve all experienced. We all get confused. People with dementia do it more often, a lot more often.”

He was diagnosed at age 58.

“It was such a shock to us all,” Taylor said. “For most people the diagnosis is as profound as living with the disease, maybe even more so. This is the beginning of the end of a long goodbye. As of today, you are one day closer to death. Now, I realize … we are all one day closer to our death.”

People often ask him what it feels like to have Alzheimer’s. He doesn’t get a buzz or have hot flashes, he joked. He just feels like himself, except there are days his family has to remind him of what he did the day before.

“I don’t know if there is a moment you know you have it,” he said.

Taylor spoke three years ago at Sun City. He recalled being at the ballroom before but couldn’t remember what year. Back then, he talked without having to use an outline. Tuesday, he followed an outline with the 20 questions people ask about Alzheimer’s.

Even though he still does a lot of public speaking, his condition has progressed.

“I forget a lot,” Taylor said. “I get confused. I can’t even play cards now because I can’t follow the rules. I used to love to play bridge.”

“I have almost no attention span at all,” he said, looking back at a screen with questions he planned to touch on during the hour and a half session. He has an assistant now. He is slowly giving things up, like paying bills and driving.

“I still believe in my heart I can do it, but in my mind I know I can’t,” he said.

Taylor also talked about his fears as the disease progresses.

“My fears are that I will intellectually soil myself in front of an audience, I’ll forget and,” he said, pausing for a minute, “I will have this long pregnant pause where you are all rooting for me to find the words I am looking for.”

Families should talk about the illness and treat it as a transition, then phase into the changes it brings, Taylor said. He recommended:

• ease into handling over duties, such as household finances;
• talk about a living will;
• decide how you want to live the rest of your life;
• make peace with relatives while you are alive, not as you are dying.

Most importantly, do not treat Alzheimer’s patients as if they dying or fading away. Alzheimer’s and dementia patients are “not dying, we are changing,” he said.

“Some of my cognitive abilities are slipping. I get confused. I forget things but damn it, I’m still your father. I am still your husband. I am still your best friend,” he said. “I am still Richard, a whole human being. I just get confused more. I think you can love me anyway.”

Families and care givers should not try to force Alzheimer’s patients to try to remember the past. What most people do is reminisce. It is a way for families to feel the patient is “still here,” he said.

“Reminiscing is overdone. Reminiscing is a false high and who’s the high for? The person with dementia or the care giver? It’s for the care giver.” Care givers need to help patients understand and live for today.

Taylor’s speech resonated with audience members, some of whom had relatives with the disease or who work with dementia patients.

Janet Rudolph attended with her parents, Chuck and Joan Stutler, who live in Sun City. The family has a relative with Alzheimer’s. Taylor’s experience gave her insight into how to deal with the illness, Rudolph said.

Taylor will be speaking at McHenry County College from 2 to 4 p.m. today. The cost is $25. Seating is still available. The college is located at 8900 U.S. Route 14, Crystal Lake.