Q&A with Cathie Borrie
Cathie Borrie is the author of The Long Hello: Memory, My Mother, and Me (Simon & Schuster), a memoir of caring for her mother with dementia. Based largely on recorded conversations, the center of this work is the mother-daughter relationship during the caregiving years, although many other back stories set this relationship within a moving and necessary context. Cathie has had an extensive and diverse working life, which includes careers in health, law, and business. In 2005, she obtained a Certificate in Creative Writing from The Writer’s Studio at Simon Fraser University. She lives in North Vancouver.
Cathie is dedicated to galvanizing a positive, honoring, and enlightened attitude in society’s perception of the dementia experience, a perspective she learned at her mother’s side.
You can read a print-friendly PDF version of this interview here.
How did you come to write The Long Hello?
I had always wanted to write, but always wanting to are such hollow words. I had lived a very rich and full life, but it was only after my mother was diagnosed with dementia that I began to place pen to paper. Pencil to paper, actually. As she traveled back in time, so did I. Reminiscing brought back many experiences that I wrote down in brief, lyrical vignettes – a form that continues in the book. Additionally, her voice – that is, her perspective, language, and opinions, were changing. She became a poet and said the most amazing things, and I think it was the poet in her that released the writer in me. This is one of my favorites:
“Cath, we’ll have to have a little fire in here when they come, and they’ll have to have a little fire in there. You can’t have no fire – they dance by the fire.”
I taped many of our conversations and then transcribed them, so her magical voice weaves throughout The Long Hello with humor, insight, and an astonishing lyrical sensibility.
The book’s description notes that, as a caregiver to your mother with dementia, you realized your “role was to follow, not lead.” This is captured in the beautiful, lyrical tone of the book, your memories, your conversations with your mother. How did you come to this realization?
The hard way! In a sense, I think that following should be our role in many relationships, don’t you? But of course it is terribly difficult, in part because we all are so desperate to have our own stories listened to . . . and we can’t wait to share them, to be heard. One day we were driving past a store that had been on that block for a long time. My mother pointed it out, saying what a lovely new store that was. In my entirely too human response, I corrected her, thinking it was important that she be oriented, that she would feel better, do better, if I kept her in the world. That is, my world. The crestfallen, embarrassed look on her face taught me a valuable lesson – I should have said yes, what a great new store. There was no good reason to correct, fill-in, orientate. Against a background of many slip-ups over the years, I had at least learned how our communications should be, and tried to follow, instead of lead.
This September, as part of our World Alzheimer’s Month campaign, we’ll be talking about stigma and language as they relate to people with Alzheimer’s disease or another dementia. Words can inform and comfort us, excite and thrill us or inspire action. Words can also rattle our nerves, discourage our initiative and chip away at our self-confidence. We can react physically and emotionally to what is said to us and about us.
Is there any parallel to be drawn between your reasons for writing The Long Hello and the idea of the power of words to reinforce – or to fight – stigma? Do you think this may be a reason it’s been received so positively?
I had no plan or objective when I was writing The Long Hello, and never thought of what might be the response down the road. I did not even know if it would one day be a book, though I had hoped for that to happen. That’s what the writing process is like – you write and write and write and edit and edit and edit and you listen to feedback and edit some more, but I never had a reason to write, beyond my love of language, of writing, of these stories, until much later in the process. I had no audience in mind and did not even sense I was writing about dementia. I was writing about my mother and me, and all the stories we had lived through.
As to its positive response, I can only tell you that my readers and audiences tell me that they appreciate hearing my mother’s voice, are hungry for an honest, raw, and beautiful story, and that they see in the writing the possibility to maintain a relationship through very difficult times. The lyrical, non-conventional form appeals to many. The most important responses include those from people with dementia, as they are the final arbiters of the work. You would have to ask them, but I hear from many who fell in love with my mother’s voice, with the connection we were able to maintain, and with the honoring perspective the book holds.
Do you have any other words of advice for those who are caregivers to someone on the dementia journey?
I think we are doomed if we continue to rely on linear memory and rational language. This experience requires, at some point, moving into emotional communication, into imagination. The need for relationship never disappears. I have had people with dementia tell me it is catastrophic to lose memory, but unconscionable to lose relationships. The most important thing I learned to do, although I was not always successful, was to stop trying to bring my mother back into my world, or the world that used to be ours. It is pointless and cruel. It does not matter if they know us or not. Surely the time we have had as ourselves is sufficient, and now we need to become other, if that’s what they need. A focus on other, rather than on self, on ego, is a good perspective. Not always easy, but preferable. I never felt I lost my mother, though this is a common grievance. I felt that her essence, her spirit, her soul, endured, and I tried to stay connected to her in any way I could. Music is a huge help, and everyone should watch the film Alive Inside. Everyone should research the several iPod projects that exist, and discover ways to connect through music and art – there is much evidence that the arts continue to support and assist those experiencing dementia, and their care partners.
Anything else you would like to note about the book – or about yours and your mother’s story?
My mother taught me that her spirit continued, the soul of her persisted, and she invited me to stay connected and loving in whatever way I could. I tried to do this with song and music, through touch, by following her lead, by taping her voice – and finally by offering her story, our story, in The Long Hello: Memory, My Mother, and Me.
Could you comment, in general, on the changing face of dementia in our communities?
People with dementia ask to be supported in continuing to live very rich and meaningful lives for as long as they are able. Many are outstanding advocates serving on boards, committees, and international bodies, promoting policies that support the dementia community. I believe that all organizations and events should be inclusive of the dementia community, just as has been the case for many diseases. Who knows best what is needed other than the people with the need? In the same sense of following my mother’s lead on a personal basis, we should all be following the lead of those with dementia in the setting of templates for care models and policy development.