Christmases with Ben were filled with music

When I think of Christmases with Ben, I think of music 

Each Christmas Eve, Ben would play the organ at our local church’s candlelight service, and our two children would take part in the Nativity. Then we would walk home and have homemade mince pies and the children would want to have their own carol service. The children were very inventive and as they got a little older, they even made their own order of service sheet. Ben dutifully played their chosen carols on the piano and we all sang with the children acting out various parts. It was magical – the children, the music, the Christmas tree and decorations. And of course, the laughter.  

Christmas morning always started (too early) with the sound of the children discovering their stockings and delightfully opening each little present together. Ben would start preparing the Christmas meal while I spent time putting batteries in various toys – I should have done this in advance! While in the kitchen Ben would listen to recordings of carols, often from St John’s Cambridge where he had been a chorister. He was totally in his element, consumed by two of his great loves – music and cooking. The turkey was always done to perfection, and the roast potatoes and vegetables were incredible. After the main course we would turn off the lights and Ben would pour brandy on the Christmas pudding and set light to it, much to the children’s delight. 

I write about these Christmases with sadness, but also so much fondness. They were magical and we were a happy and secure little unit enjoying time together.  Christmas was always something to look forward to and enjoy.  

Sadly they were over too quickly.

Ben’s diagnosis of young onset Alzheimer’s disease

Ben wasn’t even 60 when he was diagnosed with Alzheimer’s disease. And while the news came as a shock, the signs had been apparent for some time. Even at Christmas time. He began to get very tired on the day and struggled when lots of people would come over on Boxing Day. I remember one time my mum asked me whether or not Ben liked the present she gave to him, as he hadn’t thanked her and had just looked at it. This was so unlike Ben. I said that yes, of course he did, he was just busy with everybody. While at the time we put it down to tiredness, it was obviously his dementia. And it was the beginning of many sad changes. 

It was only two Christmases before Ben’s passing that he got a bit muddled with preparing the Christmas meal, and I had to help him. It was hard because the children wanted one of us to be with them instead of both of us being in the kitchen for hours. For Ben’s last Christmas, when he could no longer talk, or cook anything himself, he was still able to be with me in the kitchen and indicate whether he thought the potatoes were ready. On that day, we gave him his last Christmas present – a new coat. We helped him unwrap it and the kids said, ‘It’s for you Daddy, it’s your present!’ He wasn’t able to speak but his face lit up. He loved it. I will never forget that. 

Admiral Nurse Jody was a lifeline through our toughest times

Our dementia specialist Admiral Nurse, Jody, was an incredible support to our family, and especially for me throughout this journey. During our meetings she would remind me that we still had Ben. However different he had become and however bad his illness was, he was still my Ben, the children’s dad, and we could still sit with him or hug him and he usually responded. I can’t tell you how much this helped me.

She also helped in so many practical ways. In Ben’s latter years, he was no longer able to work and so I was juggling multiple jobs. This, on top of caring for Ben and parenting two children entering their teenage years. While we still loved Christmas, it was really hard finding the time to prepare for it. The tree didn’t get brought out and decorated until the last minute, and often stayed up until well after the day itself. 

Jody helped with so many elements of Ben’s care, through to his final days in hospital, where she was by my side, explaining what was going on and ensuring that Ben was in the right ward. 

While Christmases have changed in his absence, I still adore spending time with the kids, even though they’re not really kids anymore! We’ll always remember Ben at this special time, and what he brought into our lives – the music, the food, the laughter and the love.