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Jan’s story: "No one should face dementia alone

Jan shares the challenges she faced when caring for her parents with dementia, and why she’s leaving a gift in her Will to Dementia UK.

Jan and her parents’ last photo together in June 2009

Jan and her parents’ last photo together in June 2009

I am so lucky to have had two wonderful parents who gave me many precious memories to treasure. Sadly, they both developed dementia, my father in the last couple of years, secondary to cancer. My mother had the condition over many years, but her personality still shone through even in the latter period of her life.

Dad met my mum while studying at the wireless college in Colwyn Bay, and it was love at first sight. However, he ‘disappeared’ during his military service, never explaining his absence. In the last few weeks of his life, he told us his disappearance was due to being detached to secretly work at Bletchley Park during the Cold War, a secret he had kept his whole life.

Jan’s parents in 1952

Jan’s parents in 1952

My childhood memories are of happiness and love. Holidays with my grandparents in Colwyn Bay and with friends in Scotland and Cornwall. Long walks in local beauty spots, water fights in the back garden and sledging in deep, deep snow, always with much laughter!

Our journey with dementia

I first started noticing signs of dementia in my dad when he started being fussy with food. I found this really frustrating, and I have to admit I got angry with him. He also became less communicative and a little subdued. Over time, he became very sick, and mum and I were both physically and emotionally exhausted caring for him. We knew nothing about dementia and were offered no support. How different it would have been with an Admiral Nurse to help us.

A few years after dad’s death, my mum started to become forgetful, initially just in small ways, and she seemed to lose her confidence. Her sense of humour was also less defined. By this time, I had researched the subject of dementia extensively, and learnt strategies to support my mum. I avoided confrontation and was determined to remain positive. We shared memories, and talked about the war years and her childhood, all which helped to keep her more cognitively aware. I played her favourite music, getting her to sing along. We watched films, looked at photographs of our trips and laughed together, remembering our magical years as a family.

Sadly, I lost mum in 2017. She developed a serious chest infection and stopped eating or drinking. One afternoon, she held my hand and whispered to me “I want to join your dad”. That was the last time she spoke. I stayed with my wonderful mum and played her favourite Andre Rieu music, as she passed away peacefully.

Why I’m leaving a gift in my Will

Dementia is a cruel condition. The journey is hard, and for the carers often lonely and dark. The main lesson I learnt was to give unconditional love, however difficult things may get, and to treasure the time you have. The emotional pain of seeing the most special people in your life gradually drift away is at times almost unbearable, but the joy of those shared times can never be taken away.

I’m leaving a gift in my Will to Dementia UK, because no one should face dementia alone. It is an honour and a privilege to support the vital work they do to ensure carers get the help and expertise they need.