Tuesday, January 26, 2021

How much do I want to know?

When Doug was first diagnosed with MCI (Mild Cognitive Impairment) I wanted to know everything. At the time I was somewhere in the middle of my dissertation - research was my life, and I was good at it.  Also very good at procrastinating by way of veering away down rabbit holes . . . 

My dissertation had a deadline. At some point, I had to stop reading about Alice Munro’s work, and use the information I had to write my own work. No one, alas, was going to stop writing about her fiction in order to give me time to stop researching (especially not since she’d recently won the Nobel Prize!). I had to make choices: would I read French articles written by Canadian academics (in translation)? Articles by French academics, in translation? Other academics in other languages? I was great at self-sabotage, fearing Imposter Syndrome, all too aware I’d only scratched the surface of what could be learned. 

(I spent hours and hours of my life at this desk . . . and this is the only photo. So thankful my friend, Amy, made me a scrapbook of our years at uni, and thought to record this, erm, mess . . . ) 

I discovered Baycrest, in Toronto, and bought Living with Mild Cognitive Impairment, which I recommend as an introductory read.  Its tips and suggestions worked well for some time - time when I prayed that Doug would be in the lucky 10% of people living with MCI who don’t develop Dementia. 

When it became clear that Doug was not, alas, in that 10%, I borrowed every book from every library. I spent (far too many) hours in front of the computer. When we returned to Canada I managed to get Doug an appointment at the √Člisabeth Bruy√®re Memory Program in Ottawa. We finally got a local family doctor (a challenge in this town). We saw the local Seniors’ Mental Health expert. I stayed in touch with our original doctor from Addenbrooke’s. When I learned one of our fellow travellers on our Civil War tour was a neurologist who wanted to write a book, I asked to sit with him at dinner and bartered an exchange of information. Almost too late, I discovered Dementiability, whose workshops I highly recommend. 

What’s helpful to one person may not necessarily be helpful be to another. That said, I have found these books useful on my journey. The 36 Hour Day (new edition coming in August),   Conscious Caregiving Guide and its companion, Conscious Caregiving Workbook (all available at https://chatnoirbooks.com or your local independent bookstore).

Of everyone I could, I asked the same question (one question that can never be answered): How long do we have? How long does Doug have?

“How long is piece of string?” my maternal grandmother would have replied.

I am not a neurologist myself; I am an expert only in terms of my lived experience. I know I can only know so much. At times, the knowledge is overwhelming, and I have to ask myself how much I need to know. How much of the future do I really want to see? I have to remind myself that I can’t keep looking for a magic answer - there is no magic answer. 

The doctors are the experts and I choose to trust them.

By the summer of 2018 I started asking myself if it would it be more helpful for us if I read one more book, or if we sat on our deck in the sunshine, feeding the ducks, just being together in the moment? 

And, really, isn’t all of life a question of how best we can spend our time? (And choosing how to define "best" for ourselves?)

There is so much that I’m aware I don’t know. There is, no doubt, much much more that I’m not even aware that I don’t know. But, for me, for now, I know enough.  I don’t regret the books I did read, but I don’t regret the ones I didn’t. Nor do I regret one second of the time my husband and I spent together, sitting on our deck.

1 comment:

  1. I love this, Louise. The power in knowing and not knowing both. It's never either/or. xo