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.
Photos, writing, prose poems and poetry, plus short courses and materials to help you capture the art of everyday wonder.
Twitter: JulieGibbons
says:
Twitter: JulieGibbons
says:
@Julie Gibbons: @Julie Gibbons oops - something went wrong there - this was sposed to say “love everything about this”
Twitter: jackiewalker
says:
What a moving, honest and vulnerable post Joanna, I’ve loved it and am sure your Mum would too. xx
Thank you so much for sharing this, Joanna. It took a lot of courage and trust to open yourself up like that.
You’re right that sharing your writing, yourself, like this is extremely powerful.
How lucky you are to have captured your mother in your journal’s memory. It made me wish I’d done the same 19 years ago when my mother was dying. I’ve forgotten a lot about that time and about her. Well, perhaps not as much as I think. Writing is a a good way to access the memories.
I hope you share your mother poems when you’re ready.
Nicola x
Very moving Joanna xx
Most of my thinking writing is what goes on my blogs. Which my parents get. Which means that I haven’t been writing about watching my parents in this process. Which means I haven’t been thinking. Thanks for the reminder of paper.
Joanna, thank you for sharing this. It’s incredibly moving and it shows the immense love you have for your mother.
Twitter: ebbstachio
says:
Wow Joanna.
Powerful stuff. Thank you for being brave enough to share this. My Grandfather died in his sixties from Alzheimer’s and my Aunt is very ill now. It is such a difficult illness to deal with.
My mother wrote a poem about her Dad. I’m going to email it to you, as she is happy to share it.
Conor
I’m amazed at your ability to capture this important time despite the pain of pressing emotions at the time. Your descriptions reflect not just your mother but the Joanna I have come to know on this blog. To not freeze up when it’s most tempting is a gift.
Diana,
Lovely choice of photo too.
Joanna ~
First of all, my condolences on losing your mother. It’s a loss I don’t think one ever trully “gets over.”
Second, thank you so much for sharing such an intense and personal experience. Your treatment of this issue is so beautiful and moving ~ I read your journal entry with tears in my eyes. My father was just in the hospital this past week after a fall and the only way I could cope with seeing him reduced to utter helplessness was to write about the experience.
So please keep writing about this if you can ~ there are many of us out here dealing with similar heartbreak. It’s a comfort to know we’re not alone.
Twitter: joannapaterson
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Julie Gibbons,
Thank you Julie x
Jackie Walker,
Oh Jackie… thank you. I hope so.
Gill Potter, thanks Gill, for listening and noticing x
Twitter: joannapaterson
says:
Nicola Henderson,
Oh Nicola, this is one of many comments in response to this post that has made me feel deeply moved, sad, and yet also connected. Thank you for sharing some of your experience with me.
You are right, I am lucky that this happened at a point when I’d learned so much about the power and necessity of writing. It helped me enormously. I will press on with the poems, though I might be looking out for help at some point in the summer - will be in touch.
I’m sorry about your mum.
Twitter: joannapaterson
says:
jon,
Oh Jon. Not for the first time I wish you weren’t so far away. I’m sorry.
Re the writing / pen and paper, I kept my journal on a private wordpress blog. That’s the way I think and write and reflect the best, framed into blog posts. Just an idea.
Twitter: joannapaterson
says:
Brad Shorr,
Brad, thank you, and for the message you sent me. Thanks. Sometimes we just have to keep sharing, even when it’s hard.
Conor Ebbs, you are right, it is hard, terribly hard and sad and unfair. I suppose like most of the things like that, also a great teacher of what it means to be human. I’ve been reminded of that in the responses to this post, here and by email and on Twitter. Not least the poem, thank you so much for sending it, and your mum. I haven’t had the right moment yet to read it, but will do over the weekend, and then reply properly.
Twitter: joannapaterson
says:
Diana,
I am deeply touched by your words Diana. There is much for me to realise there. Thank you x
Twitter: joannapaterson
says:
Mikaela D’Eigh,
Hello, and thank you so much for your feedback Mikaela. It is hard, deeply upsetting to see our parents reduced to helplessness, everything in us rails against it… but still… we must learn to accept. I do believe writing helps us to do that. And yes, I will keep on sharing.
Joanna,
This hits very close to home for me. I’m on my second experience of caring for a loved one with Alzheimer’s. Journaling is a help.
Twitter: joannapaterson
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Lillie Ammann, oh Lillie I’m sorry, that is hard. Glad the journaling helps.
Twitter: karenswim
says:
Joanna, with dementia a growing problem that impacts so many families your words offer comfort and wisdom. I still have some of the poems you penned during that hospital stay and read them frequently, awed by how you capture the essence of working through the journey of illness. Thank you so much for your openness and for giving voice to what so many have or are feeling. xx
I wish I had read this post a year ago. Your post is not just about alzheimers. My wife has been fighting small cell lung cancer for the past two years. We went through the chemo phase and the radiation phase and are now in hospice care. What the doctor said would be “months” has turned into two years. Certainly we are blessed with the time….I just wish I had thought to record my feelings and emotions as you have. For the time left I will now and thank you for that.
[...] 6. complete the book on dementia [...]
Twitter: joannapaterson
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Karen Swim,
I am so touched Karen that you would have kept my words… it is a reminder to me (again) not to underestimate the power of our words and writing. We really never do know the difference they might make.
Twitter: joannapaterson
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George Bordner,
Oh George I am so sorry. I hope that writing with care and kindness offers some comfort through this time.
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