“Can you see that steam over there? It’s their boiler – they’re back.”
Dad was looking out of the window towards a neighbour’s house. I peered into the distance; his eyesight, after two cataract operations, was better than mine. He could read the newspaper without glasses. But, no matter how hard I looked, there was no steam.
“I can’t see it, Dad.” He insisted there was. “It’s there. Can’t you see it?”
I smiled. Imagining things like this was part of his dementia. Three years ago, at the age of 89, we noticed he shuffled when he walked, in a way not dissimilar to someone with Parkinson’s disease. His mobility had worsened yet he was still digging his garden and determined to keep walking.
As winter set in, he succumbed to a chest infection. He refused to seek medical advice, reminding us he’d avoided doctors for most of his long life. But my mum took matters into her own hands; he was admitted to hospital, dehydrated and poorly. He suffered from delirium, delusions and hallucinations, both in hospital and when he came home.
“He’s been banging on the windows again, trying to scare people away,” Mum told me.
There never was anyone there, but dad was convinced there were burglars, children, you name it, around his house. We were the fools who couldn’t see them.
And so began my three years of grieving. I counted myself lucky to have both my parents when so many of my contemporaries had lost theirs decades earlier, often to cardiac arrest or strokes.
What I hadn’t bargained for was the grief that comes when a parent disappears into the dark tunnel of dementia.
I had what psychotherapist Jenny Clark says is known as a ‘living bereavement’.
This affects anyone whose loved one is still alive but with an illness that means communication and the relationship we have with them ends.
We go through all the stages of grief – shock, denial, researching the illness and any potential cure, confronting the medics – but with no support network because no one has died.
Each time I saw dad he was slightly worse; he could talk about his home being bombed in the Second World War as if it were yesterday, but not remember what he’d had for lunch.
Dad’s delusions, partly initiated by his infection, were the start of a long process of assessment. First, the memory clinic: name ten animals, repeat this address after me, recite the alphabet backwards, tell me one important event in the news at the moment.
Dad felt he’d done well. His scores showed otherwise. But he hadn’t done badly enough to be diagnosed with dementia. An MRI scan revealed lesions on the brain and vascular damage but, again, there wasn’t enough for a definite diagnosis. He merely had cognitive impairment. Were we supposed to be relieved?
Amazingly he was still allowed to drive and, despite our protestations, he took his car for a 50-mile spin down the motorway like a rebellious teenager sneaking out after a curfew. The keys had to be hidden.
At times it was as though we had the old ‘Dad’ back – his eyes would twinkle and he’d make an incisive observation, a dry joke. Maybe he wasn’t so ill after all.
I observed most of what was going on from a distance of 300 miles, while I worked and looked after my own family. Visits to my parents weren’t as frequent as I’d have liked.
Each time I saw dad he was slightly worse; he could talk about his home being bombed in the Second World War as if it were yesterday, but not remember what he’d had for lunch.
Mum would phone, exasperated and exhausted; he’d been up at 2am cooking breakfast, unable to tell the time any more.
I felt utterly helpless. I was losing him. This was my dad, who had walked from coast to coast aged almost 70, who could have me on the ropes when we debated politics or philosophy into the wee small hours; now, he couldn’t remember his age. “Am I really 90? I thought I was about 68!” It wasn’t a joke.
And it was nothing compared with what was to come.
On one visit, I helped mum sort the finances, reading the bank statements with her. Dad couldn’t understand the credit and debit columns. This was a man who had been a maths lecturer for part of career; now he ranted that his pension hadn’t been paid despite the figure being on the statement. Mum tried to hide them when they arrived, to avoid confrontation, but he would insist on seeing them.
I was helping her. Dad saw and was angry – very angry. I was trying to steal his money. I was being nosey. It had nothing to do with me. He tried to drag the files from us. He shouted I must never return to their house again.
I tried to reason with him and, I’m ashamed to say, ended up shouting too. I told him not to speak to me or mum like that, at which point he tried to kick me, pushed me and threatened to hit me.
Mum and I wept. We decided to see the doctor, who muttered about ‘safeguarding’, which mum said wasn’t necessary. Another assessment was scheduled at our insistence. We waited as the weeks passed, counting down to the appointment.
This time he could name only one animal. He couldn’t draw the numbers on a clock face. He couldn’t think of anything happening in the news. What, not even Brexit? And yes, he had dementia. Not Alzheimer’s, another type.
Dad was now 91; we hadn’t expected him to reach 90. We felt we were walking on eggshells. Most of the time he was placid but then the anger would kick in. At times it was as though we had the old ‘Dad’ back – his eyes would twinkle and he’d make an incisive observation, a dry joke. Maybe he wasn’t so ill after all.
Then he’d ask me exactly how many children I had, saying: “I have a terrible memory so I’m checking.” Sadly, he wasn’t joking now.
He’d lost so much. He couldn’t follow radio programmes, unable to retain the information.
The six novels a week he used to read became two hours to read the front page of the local newspaper. I’d lost so much too. I sat with him just so I was there, but the conversations we used to enjoy were long gone.
I’d spend a few days with them and then drive the five hours home, often fighting back tears. I’d lost my dad, and Mum had lost her husband – but he was still there, needing the same care and attention as a toddler who can’t be left near a hot stove.
Around two months ago I had a call. Dad had fallen in the bathroom. He was okay, but the paramedics insisted he went to hospital for an X-ray. He’d be out soon. Then the medics decided he might be eligible for a pacemaker, and they’d try to get him more mobile. But they didn’t because he sat for most of the day, losing the mobility he had.
“You don’t need come yet,” the family told me. “They’re talking of him coming out tomorrow.”
He opened his eyes for a moment but they were vacant, looking into the distance. Did he know I was there? I’ll never know.
His eyes still twinkled and he charmed all the nurses. They loved him. For a few days he enjoyed the change of scene. But when my mum and brother visited, he was angry and accused them of plotting to put him there so they could spend his money.
I was still told there was no need to be there; he’d been in hospital for almost two weeks and every day there was talk of discharging him. Then, suddenly, he began to refuse food. I got in the car and drove north.
What I saw shocked me. Dad was almost unrecognisable. He’d lost so much weight, his mouth moved as if he was trying to talk, but nothing came out. His eyes were shut, he wasn’t responding and even with his hearing aids he seemed unable to hear anything.
I stroked his head and talked to him. He opened his eyes for a moment but they were vacant, looking into the distance. Did he know I was there? I’ll never know. When we left the ward I purposely turned round and paused; I knew this was the last time I’d see my dad alive.
When the call came, Mum and I sobbed. But for us, the grieving had begun three years earlier. Friends ask how I feel and offer their condolences.
I’m okay. Sometimes I think “I must tell Dad that” before I catch myself. As Jenny Clark explained, I went through several stages of the grieving process before he died. Now, I’m grieving differently and on the way to that final acceptance.
