True Moments, Precious Papers, and Writing Home
The ache for home lives in all of us. The safe place where we can go as we are and not be questioned. (Maya Angelou).
When a person is living with dementia, although they might be less able to express what “home” means to them, their need for a safe place where they can go as they are and not be questioned in no way diminishes. To know what home means to a person - whether or not they are living with dementia - is to be equipped with the best chance of helping them feel at home.
Earlier this month I had the great joy of running a mini “Words for Wellbeing” exercise at the Dementia Pathfinders’ Annual Celebration Event in 2017 held in London (already one of my favourite days of the year). The brief was this: to invite about a hundred people to use words in a way that may hold the capacity to enhance their wellbeing. Almost immediately I thought about the idea of “home”, a universal concept with as many different versions as the people who are exploring what home means to them.
To open the exercise, I invited people to finish the sentence “Home is...” Home may be a place, certainly. Home might also be a person, or even a pet. After this I invited people to hold on to their image of home, and to explore this scene through their senses, jotting down their thoughts on the way. What does home look like? And what does it sound like? Are there any smells of home? And are there any tastes associated with home? Is there anything that can be felt, or touched? By the end of the exercise, although there may be some shared and familiar ingredients - family, sunshine, the smell of coffee, or the feel of a comfy bed - each image of home would be totally unique.
At the end of the afternoon, I had the pleasure of meeting John and Lori. John is living with a rare type of dementia, Posterior Cortical Atrophy (PCA), and Lori - John’s wife and carer - had shared their journey together as part of the afternoon. As we chatted Lori told me how John had written down what “home” meant to him, and I said I was glad that he had taken part. Seeing that I hadn’t fully appreciated what this meant, Lori continued, that with this particular type of dementia:
John cannot even write his name anymore. He thinks he can write but has no idea he cannot spell any longer or recognise that he is writing words on top of each other. I was shocked to see John pick up the pencil and pad when you were speaking. And then for him to be listening to you and writing down his list was a true moment for me. If l had handed him the pad and pencil he would have looked at me puzzled. I am going to keep that pad with his precious papers.*
For me this was far and away the aha! moment of the afternoon. While the invitation to explore the concept of home had certainly been an open one, what I hadn’t anticipated was that the invitation was equally to engage creatively in the act of writing. Whether or not the words we write can be re-read afterwards, or even made any sense of by others at the time in no way compromises the rich value of in-the-moment meaning making. John’s precious papers are testament to the value in giving people ongoing opportunities through the creative arts to express - in true moments - what matters to them.
*Quoted with Lori’s kind permission.
(Reflection written in July 2017)