Written by playwright, Cathy Forde.
One of the first things I learned about dementia is that the experience is different for everyone.
My play 'Hello In There' is inspired by my version of events.
In 2018 my husband was diagnosed with younger onset Alzheimer’s disease at fifty-six. Having known him since we were teenagers, and fallen in love with him for his sunny, funny, irrepressible nature, not to mention his sharp mind, I can attest he was already showing signs of change for at least five years before that. It would be little things at first: not being able to make simple decisions like choosing from a menu or becoming muddled when telling a story. Then things became more worrying; my husband lost interest in work, his driving became erratic, he started forgetting where he parked his car, losing things…
Gradually all these incremental changes increased until I started to realise my husband was morphing into a different version of himself day by day. And at first no one was listening. Family and friends and some of the medical professionals I approached were in denial, dismissing my concerns about his low mood, fatigue and irritability. A man as fit and healthy as my husband, with no family history could not have dementia. It must be something else: depression, mid-life crisis, over-exercising…
My husband was also in denial and even after he was diagnosed was reluctant to be associated with anything to do with dementia. However, I was desperate to access anything I could in order to educate and prepare myself for the challenges ahead. First port of call was Glasgow Younger Persons Services in Bridgeton where we were assigned a dedicated Link Worker to help navigate the lonely and turbulent seas of the future. I could not have coped without Lynne Meek or the service in those early times. She would come and visit us in our home offering advice and understanding to a couple in utter turmoil. She was always at the end of the phone. She met one of my sons and counselled him. She put us in touch with Playlist for Life just at the right time for my husband to have input into the songs he wanted to hear when he was out running. What a gift that was!
Alzheimer Scotland offered courses for carers, free counselling with psychologists and, crucially for me, introduced me to other couples living with young onset dementia. When I was talking to them I could convince myself for a while I wasn’t so alone but in truth, for me personally, the last few years have been the loneliest in my life.
Even pre-pandemic I was in a kind of lockdown with my husband as Alzheimer’s began to define us both and the life we used to have ebbed away. As my husband’s needs increased I could no longer work as a playwright the way I used to. All I could do was keep a detailed journal of my ‘new normal’ as it was unbearable not to be writing something every day. The truth of my Alzheimer’s experience around the time of my husband’s diagnosis informs the narrative of the play I have written for PlayPiePint. It is set around the most fractious time in the progression of my husband’s disease when neither of us were coping very well.
At times it is honest and unflinching but – I hope- there are moments of joy and laughter, usually triggered by music. I also hope it allows a glimpse into the relationship between a couple who still love each other unconditionally, against all the odds.
'Hello in there' is showing at the Oran Mor, Glasgow, between 9th May and the 14 May 2022 as part of 'A Play, A Pie, and A Pint'.