I went to my first Dementia Forward singing group yesterday as a fully fledged volunteer.
I was tasked with manning the kitchen with a octogenarian called Joan.Despite having been a volunteer for 12 months, Joan was also new to the kitchen role, but seen as she was more senior to me in her voluntary service, she took the reins and made the decisions with regards to how many cups, how many tea bags per pot, how much coffee in each mug and which cakes to group together on each plate. I was grateful for her leadership, having not been a new girl anywhere for a long time, it was quite a daunting experience and I felt a self-imposed pressure to get it right and not let any of these people down.
Joan was marvellous; a real inspiration. We almost made a hash of it though – the shutters to our kitchen hatch were opened and we were visible to our customers several precious minutes before we were ready and so the next few moments were spent in frenetic chaos as we tried to fulfill the drinks orders demanded of us. I had a lovely few hours making teas and coffees, serving drinks and cakes and watching a group of about 40 people sing their hearts out, accompanied by a very talented chap called Adrian on a piano.
As they started to fill in at 11am, I noticed a handsome man who was probably only in his fifties. He shuffled in, accompanied by a woman who I assumed was his wife or perhaps a carer and I noticed him looking at me and I smiled. He smiled back. A few moments later, this man, Les, returned to the kitchen door and spoke to me. They were not words though, it was a jumble of sounds and I could only guess he perhaps wanted a drink. “Would you like some water?” I asked, trying to communicate with him.
His carer then arrived at his side. “I wondered where he’d gone,” she said. “I don’t know what he wants,” she said, as he continued to talk to me. “Try giving him some water, that might be it.”
I got Les a cup of water and he seemed content with that. I kept catching him watching me throughout the morning’s singing session too and felt so incredibly sad for this handsome man. “Oh lovely Les,” Joan said. “He keeps looking at you. He always used to have such a lovely smile and a cheeky wink for the ladies.”
I was shocked, knowing that Joan has been at the group for only 12 months, I asked her if Les had really declined so much in just a year. “Oh yes,” she replied. “His decline has been rapid.”
I was shocked. I wasn’t shocked by the cruelty of this disease, its indiscriminate viciousness, its callous disregard for anyone who gets in its way, its annihilation and savage destruction of people no longer shocks me. No, simply seeing this lovely man, who was not much younger than my mum at a slightly more advanced state than my mum – that was shocking. It made me fearful of what the future has in store. I know it is not going to be good, or easy, but having the reality of that bleak future standing in front of me, struggling to ask for a glass of water was a particularly difficult moment yesterday.
It was so hard in that church hall not to well up and let the tears fall. So many people, so many couples affected by this horrible illness. But, I didn’t, I bit back the tears and the self-pity and I watched inspirational people enjoy themselves. I watched selfless carers try and bring joy into the lives of those they loved in a 90 minute sing-song with a cup of tea (badly prepared) and a slice of cake (poorly presented). I forced myself to marvel at the good in people; the will and determination in people; in ultimately, the love that filled that room yesterday and for a few moments at least banished dementia and its forces of evil from its four walls.
Then Joan and I washed up 40 cups and 40 saucers. I stuffed a piece of leftover flapjack into my mouth (I know!!!) and wiped down the surfaces and I realised, as I thanked Joan for her guidance and her good company that I was gasping for a cuppa and had completely forgotten to make myself one all morning. What an amateur!