As Julianne Moore's Oscar-winning performance as a woman with dementia in Still Alice continues to enthrall cinema audiences, here, Tamara Sturtz, 46, whose own mother is disappearing into the disease, explains the devastating moment she decided she could no longer handle it alone...
I have just ordered 50 iron-on name tapes – not for my six-year-old daughter’s school uniform, but for my 75-year-old mother’s clothes.
Sadly, iron-on name tapes aren’t the only similarity between my mum Jane and my daughter Daisy these days. I help her with the buttons on her coat, wash her clothes, make sure she’s having regular baths and cuddle her when she’s crying, too.
Three months ago, I was drinking cappuccinos with Mum in Carluccio’s in our hometown of Bath, having a gossip. Now she’s sectioned in a mental health unit, where she has been diagnosed with dementia. She is never going to get better.
"When I was growing up, Mum always said to me, ‘Whatever you do, never put me into an old people’s home.’"
When I was growing up, Mum always said to me, ‘Whatever you do, never put me into an old people’s home.’ But over the last month, I’ve realised that is exactly what I have to do. Dementia is complicated; it is only going to get worse, and I am already helpless as her disease progresses before my eyes. Caring for Mum would become my life, and I can’t do that to Daisy.
Having scoured all the local care homes that specialise in dementia, I have finally found somewhere really lovely. There isn’t a professional, friend or family member who doesn’t think that I’m doing the right thing for Mum. As an only child whose parents divorced 32 years ago, I can’t handle this alone. But still – I am racked with guilt.
I saw the trailer for Still Alice, and just like Julianne Moore’s character – who is diagnosed with Alzheimer’s disease, a form of dementia – my mother, once a vibrant and independent woman, a psychotherapist, has faded to a shadow of her former self within a matter of months. But no matter how many accolades the film has received, I won’t be going to see it. Living with the real-life nightmare that is dementia is bad enough; I don’t want to see what Mum’s illness will look like in another year’s time.
I knew things weren’t quite right a couple of years ago, but Mum has never been an easy character, so I simply put odd behaviour – such as shouting at children in the park or stating that my daughter’s first nativity ‘left her cold’ – down to a bad day.
But those days got more frequent, and gradually got worse. She started calling me by her sister’s name, forgetting where she’d parked her car, or turning up at places on the wrong day. Then she stopped knowing what day it was altogether. I had regular phone calls from the supermarket when she had forgotten her PIN – that was if she had remembered what she’d gone there for in the first place. I tried broaching the subject of her memory loss, but she was having none of it. There was always an excuse for it, and if she ran out of options she’d say, ‘I haven’t forgotten, I just can’t remember.’
Gradually, at the end of last summer, I began to come to terms with the fact that Mum, more than likely, had the ‘D’ word. If I could hardly bring myself to say it, I was even less prepared for the speed in which she declined. She went from forgetting the day of the week to being locked up on a mental health ward after she fell in the night early last December and gave herself a black eye. A visit to the GP set the alarm bells off, and she ended up in A&E. Ten weeks on, she’s still in hospital.
"I can’t mourn the loss of Mum because she hasn’t died"
At first, I was like a rabbit in the headlights and had to learn how ‘the system’ works in record time. I managed to get a solicitor into the hospital within the first few days so that mum could sign a Lasting Power of Attorney (LPA), meaning no one could make decisions about her future without my permission.
Since then, we have been through hell and back. She attacked a nurse on Christmas Day, has sobbed in my arms, begged me to get her out, accused me of being her enemy and asked how I can live with this on my conscience. I can’t mourn the loss of Mum because she hasn’t died – but in some respects, part of her has. I still can’t believe that I will never be able to confide in her, or even dial her home phone number, again.
It has been an intense few months, but with the help of my husband Mike and some wonderful support charities, I feel strong enough to get Mum through this. She must be terrified of how fast her world is shifting – especially in her more lucid moments. I need to be her emotional anchor.
Yesterday she was talking about her handbag; today it had become her school bag. She regresses to her childhood a little bit more every day. For the first time in our relationship, she is the vulnerable one, needing me to mother her. Just like Daisy.
For help and support: contenteddementiatrust.org or alzheimers.org.uk