Writing About Dementia

June 8, 2011 · by Joanna Paterson · in

It is Dementia Awareness Week this week.

I got a reminder about this from one of the main charities last Friday, and it prompted me to share some words about the value of writing about dementia.

Or rather, more accurately:

Writing about the experience of dementia as onlooker, family member, daughter.

Not as the person living through the disease.

Not as doctor, consultant, nurse.

Not as the person providing the main source of care.

Simply as someone who cared, and tried as hard as I could to notice, and honour, and understand what was happening.

Writing helped me to do that.

Writing was an essential part of learning how to do that.

Writing was, for me, an essential part of learning how to live with the onset, and onward march, of the disease.

A Journal Through Dementia

I kept a detailed, daily journal of my mother’s experience of dementia through two main periods, one a stay in hospital when she suffered post-operative confusion, the other a stay in a care home in the two months before she passed away (some 18 months ago now).  Keeping that journal helped me to:

  • Process some of the whirling thoughts and emotions that otherwise would have overwhelmed me
  • Pay attention to the detail and specifics of some everyday moments which might otherwise have got lost
  • See not just the sadness of illness and decline but also much kindness, care, humour and love
  • Learn a bit more about how the mind works, how we think and feel, what makes us who we are, what our essence might be, both through paying attention to what I saw and heard, and trying to capture some of my mother’s own philosophical musings on the subject
  • Tune into some of the language patterns of the illness: puns, word plays, nonsense, humour.  Patterns which contained a lot of what you might call poetry, and often also wisdom
  • Make sense of my daughter experience as I found myself carrying out some of the acts of care I remembered my mother doing for me as a child
  • Pay attention as a way to better remember
  • Capture some of the details as a way of feeling closer to my mum, which it did, and still does, even as the words choke me with emotion and fill my eyes with tears when I try and re-read them, when I find the heart to share them
  • Shift my perspective and understanding to see the person beyond the disease, beyond the labels, beyond the confusion, beyond the fear

The value of writing, shared

I shared an article the other day about the power that writing has when it’s shared.

I do try and take my own medicine… which means there are words from this experience that I too want to share, when the time is right. My aim is to complete a series of poems and prose poems this summer, based on the journal I kept. It’s hard to work on, but still: worth it.

I also want to explore ways to teach methods and approaches to writing and journal keeping for those who are caring for or caring about someone who is ill with dementia.  Writing this article is a first part in that.

To finish, here’s a short piece I wrote in the journal a month after my mother had died.  It was a slightly selfish realisation that I missed not just her, but the writing about our time together.

JOURNAL ENTRY, 26 January 2010

I miss the grip of your fingers on my hand.

I miss you wandering, lost, looking for your way, tidying mats and shuffling napkins, I miss you swinging yourself up from your chair and setting off purposefully, with nowhere to go, I miss trying to learn what you meant and what you wanted, I miss reading to you and I miss sitting with you, and holding your hand.

I miss writing this journal, these love letters to you and I don’t want to stop writing it because if I stop it  means you’re gone and it’s over and I don’t want it to be over.

It’s not time, of course, for it to be over, so I’m going to dip in, keep dipping in to the memories of the things not written so I can hold on to this, remember it, treasure it, and also, in some way, find a way to pass it on.  To share something of your grace and beauty and charm and wonder.

It’s some small compensation, but it makes me feel more connected as I write, and cry, as I weep, as the tears fall and blind me, while I type with hands that are missing the grip of your fingers

~~~

Dementia Awareness Week runs from 6 – 12 June 2011

The image is the hands of the queen in Henry Moore’s statue ‘King and Queen’, at Glenkiln Reservoir. The hands remind me of my mother.

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