My mother was a vibrant and joyful person, the life of the party, always smiling. She was also a fantastic cook, her signature dish throughout my childhood was a hearty stew. She made it the same way for years, but one day, it was filled with random, unpeeled new potatoes. It was a tiny change, but so out of character it was alarming. We knew her father had died of dementia in his late 70s, but we didn’t connect the dots. My mother was only 58, and if she suspected what was happening, she didn’t show it. She simply laughed off any mistakes or forgetfulness, claiming she must be tired.
It wasn’t until her boss contacted my father, expressing concern about her work, that we realized something was seriously wrong. My mother was a meticulous and accurate medical secretary, but now errors were creeping into her work. We initially thought it could be any number of things, and obtaining a diagnosis took a grueling year. That wait was agonizing. My mother was becoming increasingly confused, wandering aimlessly, and losing track of her surroundings. I would take her into town for clothes shopping, and she would just wander off without explanation.
Living in London with my older brother, James, I was on TV every Saturday morning, trying to maintain a happy and jovial persona, only to then race up the motorway to Sheffield to see my mother. There was no room for tears. Meanwhile, my father was trying to hold the fort while working as an architect and surveyor. The strain was immense.
Finally, in 2005, my mother was diagnosed with frontotemporal dementia (FTD). It’s a rarer form that typically affects people between the ages of 45 and 64. By then, I’m not sure she understood, or perhaps she simply didn’t want to know. I never discussed it with her. I just remember thinking, ‘This can’t be happening to my mum.’ We all felt completely helpless. My father was given some leaflets and never heard from the hospital again. Determined to care for my mother himself, he gave up his job, and we all pitched in.
While my mother was the one diagnosed, the impact on our entire family was devastating. We knew it was a terminal illness, but we had no idea what to expect. My father was under immense pressure, it was a 24/7 commitment. I would rush home every week to clean and cook. Watching your mother change week by week is heartbreaking. I witnessed things I don’t want to think about. She lost her mobility and speech, becoming completely dependent on others.
As if the isolation for my father wasn’t bad enough, good friends started drifting away. The stigma surrounding dementia is significant even today, but 20 years ago, it was even worse. People were scared, as though it was contagious, or they didn’t know what to say. I didn’t talk about it either. I was in my 20s, and none of my friends were going through anything similar. It felt like a burden of shame, and I thought people wouldn’t understand. I remember one close school friend telling me he didn’t know dementia could be fatal. Shockingly, even now, only 10% of people are aware that dementia is a terminal illness.
My father struggled on by himself for the first few years. Then, he managed to find a wonderful retired nurse to help. Sylvia turned out to be our guardian angel. She lived locally and was there for my mother for the last few years, a ray of sunshine in our lives. My father also received tremendous support from the Alzheimer’s Society. They directed him towards day clubs and singing groups, which my mother adored. She had a beautiful soprano voice and used to sing in choirs. Right until the end, she would respond to music and try to lip-sync along to the words. Her favorite, for some unknown reason, was The Beatles’ ‘Yellow Submarine’.
Amidst the hardship, there were beautiful moments. We had always enjoyed wonderful family vacations – Spain, Portugal, Italy, and Disneyworld in Florida. My father is very spontaneous, and the Christmas before my mother died, he decided we should all go to New York. It was an undertaking, but my mother loved it. She was there in her wheelchair, smiling and trying to laugh with happiness. We were fortunate that my mother always knew who we were and seemed content. She never became angry or aggressive.
My mother passed away in September 2010. She was only 64. I was in London. I had turned off my mobile phone, something I’ve never done before or since. I still can’t explain why. I woke up to my father’s message. I’ll always wonder if my mother was looking out for me, wanting to spare me from rushing through the night to be by her side. Walking into the house that morning with my mother gone was surreal. It was as though I had known two different people – my mother before dementia and my mother with dementia. I don’t know whether it’s a good or bad thing to have those two individuals in my memory. As time has passed, I think more about the mother of my childhood. When I’m cooking, I’ll be chatting with my daughter, who is only three, about what her grandma used to make. It brings my mother back to life.
It’s been almost 20 years since my mother was diagnosed, and I get angry when I see how little things have changed. Families are still left with minimal support. It’s appalling that governments have been aware of this crisis and still do nothing. It’s a ticking time bomb. One in three people born today will suffer from dementia. Over the past 10 years, we have also lost my mother’s sister, Jean, and her brother, Peter, at a similar age, to this terrible disease.
I got involved in helping the Alzheimer’s Society after my mother died because it’s vital to spread awareness. I’ve raised a significant amount of money – I’ve run the London Marathon several times, trekked the Great Wall of China, and twice cycled to Paris. The bonus for me is that working with them has helped me talk about my beloved mother, connect with others who have experienced similar loss, and as she would have wanted, to raise awareness.
Dementia’s devastating impact is immense – it’s the UK’s biggest killer – but often the realities of the condition remain hidden behind closed doors. We must shed light on this silent epidemic, fight for better support for families, and ensure that no one faces this journey alone.
