Staring at the framed photograph of my mum on the desk in my bedroom, I smiled. With long, wavy, auburn hair and a huge grin, she was the epitome of the perfect, happy mother. That’s my mum, aged 27, carefree and smiling – exactly as I want to remember her.
But that’s not Mum as she is today. Now she’s 43 and lying in a care home, unable to communicate or move, as dementia slowly steals her away from us all. We visit, but she has no idea that we’re there. I hate to say it, but she’s just waiting to die. Her personality, her soul, the woman that is my mother – well, she’s gone.
When I was little, Mum was a fun, sweet woman. She had bad hearing, so when she wanted to play music, the whole house would know about it. I’d be in my room and suddenly the walls would start shuddering to the sound of Madonna’s Like A Prayer. I’d sprint downstairs to see Mum dancing around the kitchen, smiling that infectious, big grin.
My dad didn’t stay around for long and I was four when Mum and my stepdad had my little sister, Louise. I was ecstatic to become a big sister. “I want to be her mummy,” I said, begging to cuddle her, giggling at her screwed-up face and flailing arms and legs. I loved looking after her, and would rock her to sleep, while Mum smiled at us. I didn’t really notice anything was wrong with Mum, though my grandma Julie would come round demanding to know why we hadn’t met her as arranged. Mum would agree to take us to her home or on an outing and then completely forget. And then one day, when I was six, Mum had a funny turn.
For no apparent reason she started pacing around the house, screaming and shouting and throwing things around. She’d never done anything like this before, and didn’t seem like my mum. I was frightened, seeing her so out of her mind. It carried on for a few minutes. My stepdad yelled at me to call an ambulance.
“I need help for my mum,’’ I said to the operator. “But I don’t know where we live.’’ I began to cry, but then Louise started crying too. I ran to her side and focused on preoccupying her. My stepdad then gave the operator our address. Paramedics arrived in a few minutes and forced Mum into the ambulance against her will. She was screaming and struggling, and I wanted to run and save her, but somehow I knew that it wouldn’t help her. I sobbed as I watched her being driven away.
Mum was taken to St Peter’s Hospital, Chertsey, about 20 minutes away from our home in Heron Walk, Surrey, in the UK. We visited her shortly after. She was distressed and clung to us. She looked very scared.
“Why am I here? I want to come home,’’ she cried. None of us understood what was happening and neither did the doctors. We just waited to be told that Mum was going to be OK and would come home.
But she never did.
Because she was so young – only 26 – it took the doctors a long time to diagnose her. Three years after that first incident, when I was nine and Mum was 29, we were told she had dementia. Doctors explained to my grandma that it was a term used to describe a condition where patients progressively lost memory and thinking skills, leaving them unable to perform normal functions.
By then she’d been moved to a psychiatric hospital – Abraham Cowley Hospital in Wimbledon. My stepdad, like my own dad, had disappeared and our great nan, great grandmum Ruby, then 71, had moved in to our home to take care of us.
Mum had begged her mother – Julie – to promise to look after us if anything happened and it was a promise Grandma stuck to. She lived just across the road so helped Ruby.
I didn’t know what dementia was back then. It was just a word – the one that explained why Mum was in hospital. I just knew her personality was drifting away. I thought you went to the doctor to get fixed and came home but as the months turned into years, I learned that wasn’t always the case. Without Mum around, I felt it was my job to bring up Louise and I began showering all my love on her.
Within a few years, Mum stopped recognising us. We’d visit her every week and she’d just stare blankly, not even aware we were there. “Who are you?” she’d ask us when we stood by her bedside. Although it broke my heart to see her that way, we’d made a decision to visit her often.
She was no longer the beautiful, smiling woman she once was, the woman in the photograph. She couldn’t move or even speak because the part of her brain that controlled movement was failing as dementia was taking over. Louise, meanwhile, was my whole world. She was so young when Mum was taken away that she didn’t remember it, which I was grateful for.
I taught her how to ride her bike and tie her shoelaces. I plastered her knees when she fell over and watched her win races on sports day. ‘I’m so proud of you, you ran so fast!’ I’d say, thinking up the kind of things I guessed a mum might say. Louise never knew any different, so she was happy to have me there, her big sister, cheering her on.
I didn’t talk to my friends in school about Mum because I didn’t want to do a lot of explaining or be judged.
If Louise was bored I’d play with her, if she was having a nightmare, it was my bed she’d climb into for comfort. She may have been too young to remember Mum, but she still felt the effects of not having her around. She’d have days when she’d just want to cry. I became adept at making her laugh.
“Today, I spilt yogurt on my shirt. So I changed my shirt. Then I spilt yogurt on the new shirt too!” I’d say. Louise would burst into laughter at my misfortune.
Other times, joking around wasn’t appropriate. I knew when Louise needed a laugh and when she needed someone to hug. Sometimes no words can help, only a hug will do. We acknowledge that we can’t fix things. But we have each other.
“You’re my little Timon,” I’d say. She was Timon the meerkat, and I was Pumba the warthog from The Lion King. They had each other’s backs and were there for each other even though they were completely different. That was us. My little sister and I.
Because Louise doesn’t have her own memories of Mum before she was hospitalised, she grills me for every memory I have. She misses Mum more than I do in many ways, because she’s never really had the real Mum, the Mum before all this.
What was her favourite colour? Her favourite smell? I tell her everything I know and I try to fill the void for her. Sadly, I didn’t know much either. But I did have a few more memories than Louise and I knew the loneliness in not having a mum around, and I wanted to take that pain away for Louise. “She loved music,” I’d tell her. “She’d play Madonna all the time – loud and proud!” We’d laugh as we imagined it, putting the same tunes on and dancing around. We’ve both had to grow up so fast. Our friends can’t work their washing machines – I’ve been doing that since I was eight. I knew how to cook a decent meal, how to wash up. I kept our house tidy and made sure we always had food in the fridge.
There are times when not having a mother around blindsides me. When I was getting my GCSE results everyone was crowding around the results board at school, ringing their mums – I called my grandma. When they’d complain about their mothers annoying them I’d think to myself, you don’t know how lucky you are.
I’d give anything for one shopping trip with my mum. For Mum to fuss over my outfit or tell me I have to be home by midnight. Those little moments are lost forever.
We always had Ruby, but she’s had Alzheimer’s – a type of dementia that causes problems with memory and for which there is no cure – for the past six years and in June this year, she moved into a care home too. So now it’s just me and Louise at home, with grandma Julie across the road.
Louise is 16 and I am 20 now. We visit Mum in her care home every two weeks because we love her, not because she knows we’re there. She’s an empty shell. If I could fix her with love, Mum would be right here beside me now.
Some of our extended family and friends have stopped visiting Mum. They find it especially hard to see her in this state and I don’t blame them. But Louise and I know if it was us in that hospital bed, Mum would visit. We’d rather have these terrible memories than none at all.
Living with dementia in the family has made me who I am. I live for the day because I don’t know what tomorrow will bring. There was an opportunity to go to Africa in the summer of 2013 on a tour to raise funds for a local charity and while my friends said ‘maybe next year’ I seized the opportunity. Life is too short to put things off. I’ve learned that you have no control over the big things life throws at you, so you have to appreciate the little things. I’m at my happiest having what Louise and I call ‘family time’ – when we climb into my bed, eat pizza and watch TV. Everyone needs family time. Ours might not be textbook, but it makes us so happy.
We don’t know if we’ll get early-onset dementia like Mum. That’s why we have big plans. I want to travel the world, but I can’t be without Louise, so she knows she’ll be coming with me. As for Louise – whatever she wants to do in life, I’ll support her.
Our friends say they’re scared of dying. But I’ve seen worse – death is not as bad as living like Mum. It is difficult at times to see her in the state. I haven’t had the chance to see her do all the things a mum does for her child. But one thing is for sure. Louise and I will be visiting her as often as we can. I don’t have a ‘mum’ in the conventional sense, but I have a mum of sorts and a beautiful little sister who makes me complete.