My sibling experience started in 1960 two and a half years after the birth of my older brother John. By the time of my arrival my parents had sought help to explain his developmental delays and been told by doctors that he would grow up living a dependant and much diminished life as a result of being born “mentally handicapped”.

Left to their own devices my mother, using her knowledge and skills as a nurse, together with my father set out to prove that this assessment of my brother’s future was not necessarily inevitable. It is testament to them both that for most of his adult life my brother earnt a small living, he played cricket and football, became an amateur referee and today is a much-loved member of the community in the town where he still lives.

For me childhood memories include my brother’s weekly speech therapy sessions, extra coaching to help with basic literacy and maths, his special school, tempers and behaviours that challenged as well as his funny obsessions and astounding recall for sporting facts of all kinds. These experiences moulded me in a way that will be familiar to many siblings trying to make sense of their brother or sister’s vulnerable and different world.

Difference was not something widely celebrated in the 1960’s, conflicting feelings of pride in my brother’s achievements together a sense of profound injustice if he was teased accompanied me through my childhood. Often embarrassed by his behaviour I worried that others thought of me as different too.

In adulthood, along with the demands of a career in nursing and my own family life, I strove to be closely involved in my brother’s life and care, all the more so after the loss of our father which left us all bereft and my mother widowed before her time. Over the years anxiety and depression increasingly impacted her quality of life and ability to cope with the ongoing care needs of my brother. As they continued to live together in the family home their increasing co-dependency was challenging for both my brother and I in different ways. Much needed support from myself and the adult learning disability team was not always welcomed by my mother as her autonomy and fierce independence began to wane.

As it became apparent that my mother was suffering from Alzheimer’s disease and dementia the responsibility I felt for their care and future was sometimes overwhelming. Both of my parents had been only children which meant we lacked extended family who we might have been able to call on for some support.
When it became obvious that neither of them could manage to care for each other at home, I began the lonely and agonising process of arranging residential care for my mother separating her from my brother for the very first time in his 60-year long life. This distressed them both but after two years and with the support of the wonderful care home and social services my brother was able to join Mum as a resident himself just as COVID arrived. They had ten months in residential care together before Mum caught the virus over the Christmas of 2020.

My film made with the help of The Tired of Spinning Plates research team attempts to describe how I tried to support my brother through this difficult period. A long and isolated hospital stay preceded my mother’s death in March 2021, these were extraordinary circumstances of course but, in any event, I had become increasingly aware that it would be something we would need to face together and I had no idea what that might be like.

How to talk about death and cope with the grief of a Sibling will be an increasingly pertinent topic for many as parents die and disabled brothers and sisters age themselves. Writing about my experience and making my film has helped me to acknowledge some of the challenges of the past few years and given me the opportunity to reflect on my own journey along the path of loss. I hope this topic, worthy of more discussion and future research, might be of help to others siblings as well as professionals providing care and support to adults with learning disabilities.

Anne Stevens 2024.