I had known Rachael and Irene for many years. Rachael is a professor at a leading university and Irene had been head of English at a prestigious secondary school in Yorkshire. They were the life and soul of the party – outgoing, proud of their relationship and adventurous – travelling the world together, always planning something new, something different.
They had been together for a quarter of a century when Irene was diagnosed with Alzheimer’s disease. She was in her early 50s.
Rachael started to write a journal around the challenges faced by the partner of someone diagnosed with a life-limiting illness, but Alzheimer’s is more than that – it can have devastating effects on the memory and on behaviour as well as impacting on the vulnerability of the person diagnosed.
Rachael wrote so beautifully about the impact on her, her career, their family and friends. Her book ‘Irene, Alzheimer’s and Me’ will be published in March 2016 by Medina Publishing. It’s more than a love story, it is the journey they both were forced to embark upon which would lead to Irene’s death at the age of 66 in 2013.
Rachael knew me as a playwright and asked if I would read her journal to see if I thought there was the possibility of bringing their story to life on the stage. I was gripped by the rawness and read the whole journal in one day.
How could someone who had been so vital and vibrant be reduced to an almost vegetative state by this cruel illness? How could Rachael continue to love someone who was so reduced? Does love ever die and duty begin?
I wanted to explore these questions and if not to find answers, then to at least give the carer a voice.
Cindy and Chris Toulman had been together more than 40 years. They met when Cindy was 18 and Chris 20. They had a deep and abiding love for each other. They married and had two children.
Chris had never had a good memory, the family used to joke and tease him about it. He stayed away from social gatherings. He was embarrassed. He had a successful family garage business and Cindy was his book-keeper.
Chris’s dementia was diagnosed when he was in his early 50s and for the last four years of his life he was confined to bed unable to speak or apparently understand anything that was happening around him.
Cindy visited him every day, all day, Monday to Saturday in his care home. She took Sunday off to do the housework and washing. Every day she spoke to him, fed him and loved him. Perhaps he lived a longer life because something within him was aware of her presence and devotion.
Their adult children felt rather pushed away – they had already ‘lost’ their father and now they were ‘losing’ their mother because all her focus was on what remained of their father. It created some family friction.
Don’t leave me now
I fused the stories of Rachael and Irene, Chris and Cindy together to create the play ‘Don’t leave me now’. I gave the Chris and Cindy characters one adult child – an only child – because the burden of duty falls more heavily on an ‘only’ child. Does she/he put their own life on hold to help care for the person they have already ‘lost’?
The play was workshopped at the West Yorkshire Playhouse in Leeds and we have since been invited to do more than 40 rehearsed readings of the play at a range of venues including theatres, universities, NHS trusts, hospitals and libraries and now the hospice movement has taken a keen interest in the play.
About a year ago the National Council for Palliative Care approached me with a view to doing a performance for Dying Matters week. The NCPC does not shy away from talking about the inevitability of death and chief executive Claire Henry felt that the play dealt sympathetically and authentically with families facing the loss of someone they most love, and a play can certainly open a dialogue.
After each performance, which lasts around 70 minutes, there is a discussion generally headed by an expert in the field of palliative or dementia care. Hospices and hospitals are facing the challenges of those being admitted to palliative care who have a dementia-related illness together with other life-limiting conditions.
The play has five actors and can be performed in any environment – it does not need a stage, complicated lighting, music or costumes. All the cast are professional actors and it is professionally directed by acclaimed theatre director, Jeni Draper.