Thoughts on dementia by the late Dr Richard Taylor

Screen Shot 2015-07-28 at 10.18.21 amThe late Dr Richard Taylor, a founding member of Dementia Alliance International (DAI), impacted the lives of literally thousands of people around the world. Whether it was a person with dementia, a family care partner or professionals, his web was huge.

For our new members, I felt you may also benefit from reading them; I found the following two excepts on Dr Google not too long after my diagnosis, and recall feeling like they almost literally ‘saved my life’ from the downhill spiral of Prescribed Disengagement®™. I have not doubt others who knew and loved Richard, and still miss him greatly, will also enjoy reading words from his early days after the early days following his own diagnosis of younger own dementia.

Finding the right words

After a lifetime serving people with mental illnesses, writing helps this psychologist and Alzheimer’s patient make sense of his own mind.

By Amy Novotney
Monitor staff
Print version: page 24

For more than 40 years, Houston clinical psychologist Richard Taylor, PhD, helped troubled teenagers gain control over drug and alcohol addictions and curb suicidal thoughts. Today, he serves a new troubled client: himself.

In 2002, neurologists diagnosed Taylor, then 58, with “dementia, probably of the Alzheimer’s type,” and for about three weeks, the psychologist cried every day, he says. But rather than join the nearly 40 percent of people with Alzheimer’s disease who become clinically depressed, Taylor began writing about his fears-and triumphs-as a way to “gain control over what was happening between my ears,” he says.

“Writing became my therapy without a co-pay,” Taylor recalls in one of 82 essays he wrote for his book “Alzheimer’s From the Inside Out” (Health Professions Press, 2007). “I wrote to reassure myself that some of the old me was still there, because I was in transition in ways no one seemed to understand.”

His narratives address common questions such as “What is it like to have Alzheimer’s disease?” (Answer: like he’s looking at the world through his grandmother’s lace curtains) and his fears and concerns for an uncertain future. And while a piece that would have taken him 10 minutes to write pre-dementia often takes him 10 hours these days, the work helps Taylor better understand himself.

But it wasn’t until he shared one of his essays with a friend-also diagnosed with early Alzheimer’s-that Taylor realized that others with the disease shared his concerns, and he decided to take his essays mainstream. Since the book’s publication, Taylor has learned that he isn’t the only person with Alzheimer’s disease to conclude, after one too many failed attempts at buttoning his shirt correctly, that the shirt was “broken,” as described by his granddaughter in one essay. Nor is he the first to find that his mind has been full of “puddles” since the “tsunami of forgetfulness” cascaded through his brain. But Taylor might be the first to say it so eloquently.

He’s now a public advocate for the more than 5 million Americans diagnosed with Alzheimer’s disease. He speaks nationally on behalf of patient involvement in treatment decisions and edits a quarterly newsletter for people with early Alzheimer’s and their caregivers.

Having sat on the clinician’s side of the couch himself, Taylor doesn’t hold back in his plea for help from his former profession. He says he’d like to see psychologists get more involved in counseling and treating people with Alzheimer’s, especially in the disease’s early stages, and move away from viewing advanced patients as half empty.

“We’re always a whole person in our own minds,” Taylor says. “Psychologists should be supportive of people’s wholeness-their all-rightness.”

Is this the end of the beginning or the beginning of the end? Print version: page 25
Excerpt from an essay by Dr. Richard Taylor

“I am scared I am running out of usable time. Usable in the sense that I am using it now. I know I am not at the same level of general competency this January as I was last January. I am more dependent on others for assistance in performing the daily activities of living my current life. Clearly I could not keep this pace of activities without my spouse cleaning up behind me, reminding me to do this or that, asking if I wanted to do this or that. Taking care of me when I can’t, and helping me to take care of myself when I need help. Her patience is both generous and essential.

I have good days and bad. Good hours and bad. Good moments and bad. There is no predicting when or how the bad ones will come, except when I am very tired. Sometimes I am aware I am floundering and cannot seem to hold myself together. It is strange watching yourself misdial a phone number, time after time after time. Look for a name and then forget what I was looking for right in the middle of my search. Stand up from my chair to do something and not have a clue as to what it was. Most dangerous for me are the moments I do not understand, but think I do, or do not remember. I say things, I tell people things, I think I understand situations that are not true, a little true, or from out in left field, and the worst part of it is I do not know when each of these moments are happening. Will I do something on this date? Sure. Except I wrote it on the wrong month in my calendar and did not find out for three weeks. Can I do this? Of course! When I really did not understand what was being asked of me, and I just said “yes” for reasons that only Dr. Alzheimer knows.

Tie these all together; multiply them by 25 and you have an insight into my days. There is of course lots of time between the events, when I cruise along acting, and sometimes thinking like there is nothing wrong, until SPLASH-another glass of ice water in my face, compliments of Dr. Alzheimer.”

Don’t forget, if you haven’t already you can register here for Dr Al Powers Webinar  Living with dementia: new perspectives next week.

 

Editor: Kate Swaffer