The decision to take my dad out of the care home wasn’t a popular one.
“You haven’t thought this through,” said my stepsister.
“Who’s going to look after him?” asked another relative.
“I suppose I am,” I answered.
“It won’t be easy,” said a voice-of-doom Facebook friend. “I looked after my mum for a week
before she went into a care home and it nearly killed me.”
I was in such a hurry to remove him from the situation that was causing him distress – being in a care home with a no-visitor policy – I hadn’t thought for a second about what was going to happen next.
I’d had a nagging feeling for weeks that I needed to take him out of the home as soon as possible. In Australia, residents were being imprisoned in care homes, not allowed out for any reason and my gut was telling me that the same would soon be happening in the UK. I was right.
I’d recently moved out of London. At 58 years old, with four flown-the-nest children, I was free to be where I wanted to be. A penthouse flat in Shoreham-by-Sea, with views of the River Adur, the Channel and the south downs had been my new home since July, but now it seemed I wouldn’t be living there. A run-down council house in Essex was not where I wanted to be but, as the incredulous relative had also pointed out, I’d made my bed…
My dad was happy to be home and thrilled that friends and family could visit. The first few days were a blur of activity. Reality soon kicked in though: caring for a 77-year-old man with vascular dementia is a round-the-clock job.
On the second night, I hear him clambering out of bed and pushing his walking frame across the carpeted floor for the third time.
“Are you OK, Dad?” I call.
“I’m just going to the loo,” he replies. “I might need some help.” And he does.
The next night, I wake to find him in my room. “What’s up, Dad?” I ask sleepily.
“I just fancied a chat,” he says.
“It’s 10 past four,” I tell him. “I don’t feel very chatty.”
Even in the semi-darkness, his hunched form silhouetted in the doorway, I can see that he’s
disappointed. I feel mean. More than mean.
“OK then,” he says quietly. “So what shall I do?”
“Go back to bed?” I suggest grumpily.
He shuffles away. My heart hurts.
I get up and help him back into bed and give him a kiss goodnight.
An hour later, he’s back in my room. “Get up,” he orders. “It’s three in the afternoon.”
I jump up, heart thumping. I hate being woken up. I’m like the proverbial bear – the one with the sore head, not the one who poops in the woods. Talking of which …
“I’ve had an accident,” he adds quietly.
I’m engulfed in a wave of pity. It’s a strange feeling… normal pity mixed with a kind of niggling anger and gut-wrenching disappointment. That’s my wise and witty dad standing there, lost and embarrassed. He’s a whisper of the man he used to be. In this moment I realise
I don’t want to be there, dealing with this.
I shower and change him and tuck him back up into bed. “Don’t you dare get up again tonight,” I warn, trying to sound playful.
But I’m not being playful at all; I’m deadly serious. I believe that if he comes into my room and wakes me again, I won’t be able to cope. I’ve had years of uninterrupted sleep since I had to get up in the night to deal with other humans (small ones back then) and I’m not sure I could manage going back to that.
That night, I dream of Dad. Even in my sleep, I can’t get away.
“We’re going to have to find you a live-in carer,” I tell him the next day.
“But I like you looking after me,” he says.
“I know you do,” I smile, sitting on the arm of his favourite armchair (“the throne”, we call it)
and giving him a hug. “But I have work to do and a new flat I’d quite like to live in!”
“You can live here,” he says.
I smile and pat his hand.
My relatives were right. I hadn’t thought it through. I hadn’t pictured myself having to escort my dad to the bathroom, having to shower him, wash the bits he couldn’t reach… I hadn’t imagined how long it would take to walk him across the living room, from the door to his throne, one hand on his walking stick, the other gripping my shoulder as I sing Lean On Me to him.
That’s what we were doing when he had his seizure. He was tottering behind me, holding on to my shoulder, a two-person conga, when I felt his fingers tighten. I twisted round. He’d frozen and his eyes were flickering rhythmically, darting upwards repeatedly… As he fell, I managed to push him onto the leather sofa … He was frothing at the mouth.
I rolled him onto his side and held him with my left hand, grabbing my phone with my right. I told the 999 operator I thought he’d stopped breathing because, by the time I’d got through, he was blue. She told me to lie him on his back on the floor. I said I didn’t think that was a good idea and, in a panic, I hung up. I called a neighbour to come and help then called for an ambulance. He started breathing again and was coming out of the episode by the time the paramedics arrived. I was shaking.
After he had been stretchered out of the house and driven off in the ambulance (‘new normal’ rules prevented me from accompanying him), I felt worried… and guilty too for thinking that, with him in hospital, at least I’d get a good night’s sleep.
As it happened, I didn’t. I had disturbing dreams, one in which he’d wandered out the back door into the darkness. I could hear him calling “help me, help me” from somewhere far away. I woke up crying, praying he’d be ok.
The next day, he was returned home and was fine. The consultant said that fits were common following strokes.
Another answer to my prayers came in the form of Tracie, a lovely pink-haired carer, recommended by a friend. She said she could start that Friday. The timing couldn’t have been better. After almost two weeks being the sole carer for my dad, I was fit to drop.
Three days later, Tracie took over and I drove home to my seaside flat. It took me two days to feel normal again. Six days later, Tracie had to leave due to a family emergency, so I returned to Essex.
Between family and friends, we’ve managed to keep the 24/7 care going. It’s been like a strange kind of relay race, except there’s no finishing line in sight. It’s tough on us all caring for him at home but what choice did I have? It was either that or leaving him to fade away in the care home that had become his prison.
I’ve now returned home again while a friend is doing a two-week stint. I’m hoping Tracie will be back soon. If not, I’ll find a new carer.
Tracie, who’s worked as a carer for 18 years, told me that caring as a job is one thing but caring for a parent is very different. I’ll never know.
What I do know is, regardless of how hard it is and regardless of what anyone says, I’ve done the right thing. And, for now, that – and my dad’s happy face – is all that matters.