Writing has become a confirmation to me, of me, and by me.
Some people believe ‘they think therefore they are.’
I write, therefore I am.
~ Richard Taylor
Richard Taylor is a person living with the symptoms of dementia, as he declares in his 2007 book, Alzheimer’s from the Inside Out, and on the website to which he adds monthly:
Richard Taylor is a retired psychologist and university professor, living with his wife Linda in Texas. His book contains, in vivid prose, many thoughts about the experience of Alzheimer’s, including his advice to caregivers: “I do not want to become an advice columnist on caregiving. I do want caregivers to read my writings and figure out for themselves how this information and these insights can help them understand, appreciate, and honor their loved ones.” Taylor outlines for the reader a regular routine of writing that provides a means of therapy for him — to achieve greater clarity. Here is a sampling of the powerful messages from Taylor’s book:
“As the disease engulfs a mind, the ability to report what is going on within the mind is lost to the outside world. This is my attempt to leave a record of what is going on between my ears. I am writing about the disease as it is expressed by and is having an impact on my mind and perceptions, and my world – as I perceive the process.”
“Right now, I feel as if I am sitting in my grandmother’s living room, looking at the world through her lace curtains. From time to time, a gentle wind blows the curtains and changes the patterns through which I see the world. There are large knots in the curtains and I cannot see through them. There is a web of lace connecting the knots to each other, around which I can sometimes see. However, this entire filter keeps shifting unpredictably in the wind.”
“I appreciate and sometimes immerse myself in the process rather than only or mostly on the outcome. I like doing things. I like and appreciate the doing. Doing is how I know I am alive, and how I appreciate being alive.“
“Why not see us as a source of answers to our problems, rather than as a source of problems to which our caregivers need answers. We, too, want to be proactive when dealing with our symptoms, not just reactive to our problems!”
“I would encourage people with a disease that alters their thinking to write; not just a journal of what happened today or a dozen to-do lists for tomorrow. Think about yourself, your caregivers, your relationships, your present, and your future – and write.”
As exemplified by Richard Taylor, writing makes it possible for an individual with dementia to engage with others in a dialogue that creates meaning and forms identity. Writing renews an individual’s status as a contributing social partner, provides new and positive roles, and introduces empowerment and control. The memoirs demonstrate that dementia can be a time of growth and that authors with dementia construct and project positive new identities, which are full expressions of personhood.
Richard Taylor is one of the writers with dementia who are telling us how it feels to have been diagnosed with probable Alzheimer’s disease. Karen Bannister, Ann Anas, and I have published an article in the Journal of Aging Studies with our analysis of the writings of nine authors with dementia. [ DOWNLOAD: Writing to Reclaim Identity in Dementia]
Volume #8 in the Writing Down Our Years Series, Looking Through My Grandmother’s Lace Curtains: Writing to reclaim identity in dementia by Ryan, Bannister, & Anas (2008), contains the material from the article as well as many quotations from the writers on four themes: Threats to Identity, Metaphors for Living with Dementia, Thoughts for Caregivers, Thoughts for Persons Living with Dementia. This book can be purchased with the Order form on the home page – see also the top tab for Writing Series.
These authors are exceptional, as is anyone who manages to publish a book. However, individuals with dementia can all benefit from the opportunity to tell their stories. They can be assisted in this if their stories are recorded in their own words. Putting written stories into a Conversational Remembering Box along with favourite photos, objects, music CDs, etc. can facilitate subsequent conversations. Group poetry based on writing down the words of participants and re-reading them to generate additional lines can be a special way of preserving and sharing memories.
To Read More on Facilitating Writing for Persons with Dementia:
You Grow Out of Winter: Poetry in Long Term Care by Hagens, Cosentino, & Ryan, 2006
[Writing Down Our Years, #6] DOWNLOAD WITH PDF FORMAT
Reminiscing, Poetry Writing, and Remembering Boxes: Personhood-centered communication with cognitively impaired older adults, by Hagens, Beaman, & Ryan (2003). DOWNLOAD WITH PDF FORMAT
Web Resources on Dementia
Communication and Story in Dementia
Dementia Advocacy and Support Network
Alzheimer’s Society – Writing Room
Story Corps Memory Loss Initiative
Alzheimer’s Poetry Project
Memory Bridge: Alzheimer’s and Cultural Memory
In our own words
Alzheimer’s Society of Canada
Alzheimer’s Association (U.S.A.)
Murray Alzheimer Research and Education Program (MAREP), University of Waterloo
University of California Memory and Aging Centre
Mind your Mind Campaign, Alzheimer’s Australia
Mind your Brain
Mind your Diet
Mind your Body
Mind your Health Checks
Mind your Social Life
Mind your Habits
Mind your Head
Forget Memory: Creating Better Lives for People with Dementia, by Anne D. Basting (2009).
Baltimore MD: Johns Hopkins University Press.
This volume emphasizes the continuing personhood of individuals living with dementia – the need and remaining competence to maintain a sense of self, to relate meaningfully with others, and to be actively living. Basting describes many innovative arts programs which deeply engage persons living with dementia. She also presents a compelling case of the benefits of living in a community which promotes reciprocal relationships with persons with dementia.
See Anne Basting’s Blog: Forget Memory
Poems & Stories
This Little Light of Mine: Stories and Poetry from Family Caregivers DOWNLOAD IN PDF FORMAT
A Personal Book of Hope: M Pitkeathly
That Man: E Ryan
Talk to Me, Ma: M Lenartowicz
The Scarf – Excellent caregiver story about fostering personhood in dementia through creativity
Quotations from Writers with Dementia
I never really knew how many people are in this special fellowship [people with dementia] because I only looked into the lives of the heroic from my wholeness.
[R. Davis, My Journey into Alzheimer’s Disease, 1989]
Due to both the acceptance of this book and the wide gamut of media attention it has received, patients have the privilege of communicating for the first time with others like themselves. [D McGowin, Living in the Labyrinth, 1993]
The unreliability of my memory is as if the printer ink is running low and it sometimes works and sometimes doesn’t.
[C. Bryden, Dancing with Dementia, 2005]
I choose a new identity as a survivor. I want to learn to dance with dementia. I want to live positively each day, in a vital relationship of trust with my care-partners alongside me.
[C. Bryden, Dancing with Dementia, 2005]
I want to write the truest sentences I can in the hope my words give others the sense of struggle and joy I feel.
[T DeBaggio, Losing My Mind: An Intimate Look at Alzheimer’s, 2002]
I would love to see some people with Alzheimer’s not trying to stay in the shadows all the time but to say, damn it, we’re people too. And we want to be talked to and respected as if we were honest to God real people.
[C Henderson, A Partial View, 1998]
Until next time, mind your mind