Whilst not strictly a novel exploring Dementia, Say Say Say has been an important addition to my reading list this year. It centres around a small cast of characters: Bryn, an older man whose wife, Jill has sustained a traumatic brain injury and Ella, the young woman he employs as a companion and carer for Jill. Jill exhibits many of the symptoms associated with Dementia. She struggles to process thought logically, no longer recognises herself or the people around her, requires a lot of physical assistance and, most notably, displays a form of aphasia which leaves her language and communication skills confused. Her lexicon is greatly diminished and she often resorts to expressing herself through a series of repetitive linguistic tics such as, “say, say, say,” as alluded to in the novel’s title.
Interestingly, Lila Savage doesn’t really attempt to explore or convey Jill’s experience or feelings as she becomes increasingly dependent on her carers. Say Say Say is a novel which focuses on the family and carer’s experience and as such, is an essential read. The reader is given a wonderful insight into what it’s like for a young woman like Ella to be responsible for someone so very dependent. We see her struggle to communicate effectively with Jill as her linguistic possibilities are incredibly limited. Eventually Ella lights upon some creative ways to connect with Jill. She begins to mirror the older woman’s linguistic tics.
“As the next best thing, Ella began to respond to Jill’s circular rants as though they were friends chatting, responding in a steady, sympathetic murmur, as though the natural back-and-forth of conversation were occurring.”
And in some of the most moving scenes in the book, Ella learns how to slow her normally hectic pace of life down in order to be present with Jill. Jill potters around the house and garden, often silent or mumbling to herself. While Ella reads, draws Jill and writes poems about her. In this way she manages to connect with some essential part of Jill and this connection makes it impossible to administer the physical side of the older woman’s care with anything but careful dignity. “Ella wants Jill’s every encounter to be respectful.”
Through Ella’s eyes we are also given a snapshot of how Bryn feels as he cares for his beloved wife who has become incapable of looking after herself and no longer knows who he is. “Bryn essentially lived in hell, Ella knew this even if she didn’t always acknowledge it. It was like he was confined to an empty white cell with nothing to do but observe the sights and sounds of the torture of the person he most loved.” Savage offers her readers a very honest portrait of a good man, who loves is wife and yet has become worn down and frustrated by the burden of caring for her.
It is this unswerving honesty about the carer’s experience which makes Say Say Say an exceptional read. The characters here aren’t remarkable. They’re honest, very recognisable, figures, doing their best under difficult circumstances, sometimes excelling and sometimes failing. They’re occasionally angry and despairing, occasionally able to seize small moments of unexpected joy. It reminded me of so many of my own experiences working with people living with Dementia and talking to their carers and family members. It’s a very moving book, beautifully written, shot through with small nuggets of humour and perfectly placed to give the reader an accurate understanding of how caring for someone with a life-changing illness will affect every part of a carer’s life.
Say Say Say was published by Serpent’s Tail in 2019