Of all the things you expect to be doing as a 23-year-old graduate with a great job (and even better prospects), giving it all up to move in with your grandmother to care for her full-time isn't one of them. Especially if your gran has severe dementia. But that's what happened to me and what an eye-opener it has been, changing my personality, my career path and my whole attitude to life profoundly.
Dementia is relentless, depressing and debilitating. And that's just for the carer. There were days, in the months after I moved from a busy London life to be with my gran in her small Derbyshire village, that I wondered if I myself was going mad. I was certainly very low. She'd ask the same question again and again and again. And if I dared have a quick shower, I would often get the inevitable phone call. "Your gran's outside the post office in her nighty, love." This was a job harder than any employer could have thrown at me and it was 24/7, with an income of just £53 a week. I lasted just shy of two years. Not that I'm complaining. I have no regrets and would do it again in an instant.
It will come as no surprise that I've always been close to my gran. I grew up with my mum and my brother and sister and we enjoyed many summers with her in Anglesey. We stayed the whole six weeks and we loved every moment. She wasn't gregarious. If anything, she was reserved. But she came out of herself when children were around. When she moved to live round the corner, we couldn't have been happier.
She never forgot a single detail about our lives and she was so proud of us. When we took up karate, she came to watch every competition and she'd save every newspaper cutting. She was generous, too, presenting us with a huge box of treats every Christmas, a great luxury in our house.
By the time I was in secondary school, rare was the day that Gran didn't come round. But around the time I went to university to study a BSc in counselling psychology, things changed. Her normally pristine house was a bit messy. She came round less and she forgot things.
Finally, after I'd landed my dream job in London on a graduate scheme working with autistic children, Gran got diagnosed with dementia. I had an appalling sinking feeling, but it was tinged with relief. Her odd behaviour was explainable.
A year into my job, I visited Gran and was shocked to find her sleeping on her sofa and failing to wash properly. She'd become a terrible hoarder, making the place a deathtrap with her stuff. "It's time for a care home," I told my mum, but we both knew Gran would loathe it. Then it hit me. I could care for her. I'd saved up a bit from my job and it's not as if I'd have rent to pay if I lived with her. It was a spontaneous decision, but I'd never been more sure of anything. I wept as I handed in my notice – I'd never enjoyed a job so much – and my friends were amazed at my decision, but I was adamant.
I moved in on my 23rd birthday. I felt energetic and gung-ho and Gran's relief was apparent. I got the place tidy and clean, as well as Gran's eating and personal hygiene back on track. Anything she could do for herself, I made sure she did – I merely guided her. We enjoyed each other's company, chatting about everything from TV programmes to politics.
But the nights were awful. She became convinced she had work the following day. It would take two hours to get her in bed. Sometimes, I'd find myself going along with it. "Violet won't be coming in tomorrow," I'd say into the phone. I felt awful lying but it settled her mind.
The weeks passed and I became bored and claustrophobic. By 10am, the house was spotless, but if I left the room, she'd be out on the streets, lost. There were times I realised I hadn't left the house for a fortnight. But it was worth it.
Then, about six months in, she deteriorated rapidly. She obsessed about things and asked the same questions up to 100 times in a single day. "When am I going to work? Where am I?" I'd want to tear my hair out. If anything went wrong, which it frequently did (Gran sneaking outside and hurting herself when I wasn't looking; Gran hanging the washing over the gas fire when I nipped to the loo), I felt guilty. I often felt upset, too – she increasingly snapped at me.
A wonderful social worker (who once walked an hour in the snow to check we were OK) helped enormously. She got Gran into a daycare centre two afternoons a week and told me about the carer's allowance. It wasn't much, and I still marvel how other people survive on £53 a week, but my money was dwindling fast after paying for the food and phone bills, so it was something.
Over the next year, Gran got worse until eventually I was unable to just breathe in some outside air for fear of her causing harm. I was too tired to go out on her respite days and I felt I had nothing to talk about with friends anyway. I worried about money and my career, although mostly I just worried about Gran. Some days, she said there was nothing in her head – she meant she couldn't form a thought. It was excruciating to watch her just try to exist – that's all she was trying to do.
It didn't help that we were both sleep-deprived. She'd regularly wake me up through the night with her questions. I got three hours a night if I was lucky.
There were good days – days when I thought, "You can do this, you're making a difference," and they kept me going. Then, when my partner was home from Afghanistan, where he'd been serving in the military, we took a holiday while Gran went into respite care.
But Gran was in hospital with a badly broken arm when I got back. I was so angry. It had never happened in my care and I was on my own. It set her back hugely and by the time we both got home, I could no longer cope.
Just over a year ago, we found a good local care home and although I miss her like mad, I know it's the best place for her. Although she has some lucid moments on my daily visits, she's mostly confused and is now losing her balance.
I'll continue living in Gran's house just until I've done it up to sell it to pay for her care. Then I shall retrain. I've decided I want to work with adults with mental-health issues – what could be more rewarding?
Some days, I hardly recognise myself from the person I was before living with Gran. At 25, I'm more resilient than I could ever have imagined. Nothing could upset me as much as it did during those two years. I feel different from my friends, too – older than my years, somehow, although not in a bad way.
It's put things into perspective for me as well. If I think I'm having a bad day, I remember what genuinely bad days feel like. I also think my self-esteem is higher – not in a smug way, but I feel proud and lucky to have had the opportunity to stay with my gran when I did. Life throws all sorts of unexpected things at you, but I feel ready for anything now.
Interview by Kate Hilpern
Free information about Alzheimer's disease and related dementias is available from Alzheimer's Research UK by calling 01223 843899 or online at alzheimersresearchuk.orgReuse content