Dear Richard,

You have been my shining beacon of light since my diagnosis of younger onset dementia. My Google and I were best friends for the first few weeks as I searched for information about dementia, and for help. Any form of help, as there seemed to be none out there, and I had not been referred to any. Eventually I found help locally, but the very first help I received was through finding an interview transcript and an excerpt of one of your essays.

They resonated with me so much that after crying for many hours from relief that I was not alone, they (YOU) stopped me crying and catapulted me into positive action. I started writing again, privately and through poetry. I started reading books on how to help myself, what non pharmacological and positive psychosocial interventions I might be able to use to help myself, to impair the speed of the symptoms of dementia. I started to believe I could help myself. But most of all, I wrote, and this became my therapy for healing, allowing me the emotional energy to help myself and remain positive.

At the time, I felt like you had saved my life.

It seems dreadfully unfair you now have to face treatment and surgery for this rare oesophageal cancer, but we all know, we cannot change many of the things that happen to us, but we can do our best to work with what we have. Right now, your friends around the world are undoubtedly thinking of you and your family and wishing you well. Peter and I also wish you well with this next phase of illness, and hope and pray the results are positive.

Thank you Richard for your extraordinary contribution to the world.

With gratitude, love and hope from one of your friends in Australia,

Kate xx

This is the first interview I read:

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

“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.”

And this is an excerpt of an essay:

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.”