Dementia stole everything my father held dear

The care assistant was feeding my dad liquidised sponge cake.

Tears pricked my eyes as I looked around the dingy nursing home lounge where my dad spent his days. I tried in vain to block out the terrible images I was presented with: a dozen elderly people — all bewildered and wretched, all suffering the effects of the irrevocable, debilitating and devastatingly cruel illness that is dementia.

All the home’s inhabitants had dementia — all were confused and disorientated, every one as pitiful as the next. All the residents manifested a different behaviour — there was incoherent rambling, aggressive shouting, incessant singing of the same song, rocking backwards and forwards in the chairs, perpetual asking of the same question, and random shrieking. It was indignity personified — and it was heartbreaking.

My dad did nothing but relentlessly try to escape the confines of his chair. He’d struggle to his feet only to find he was too weak to stay upright, and stumble back down. Undeterred, he’d try again and again. He was up and down constantly, sometimes for hours, until eventually collapsing into the chair and falling asleep, exhausted from the exertion.

Dad was unable to articulate where he wanted to go — he was no longer able to speak — but nothing that anyone could do or say would pacify him. He was agitated and exhibiting signs of profound distress — attempts to ease him back into the chair were met with defiance: he’d stare wide-eyed at the carers, desperate to understand why they were preventing him from getting up on his feet.

When he’d been stronger, dad’s incessant wandering led to him suffering numerous falls; one day falling backwards and sustaining a fractured skull — an injury so severe we were told he would not survive it. Against the odds though, he did. He’d always been as strong as an ox, and had an astonishing tolerance for pain, and I suppose we should not have been surprised that he defied death, not once but several times. After he fractured his skull though, the agitation he already frequently displayed became a constant.

He was desperate for something or someone, but there was no way of finding out what. It felt cruel to thwart his attempts to get up and we had no way of conveying to him that sitting down was for his own good. He would look at us perplexed and wounded — seeing the confusion in his eyes broke my heart.

Dad’s confusion was first noticed in the aftermath of my mum’s death in 2010, and his descent into full-blown dementia was rapid. We dismissed his forgetfulness initially, putting it down to the trauma of losing mum so quickly, but it was not long before he displayed behaviours we knew we couldn’t ignore. Dementia, and all its associated horrors, was an unpalatable reality.

He would often seem fine to those who would encounter him infrequently — he was plausible, and was his friendly, smiling self. But to those who were closer to him, his confusion was much more obvious. The outside world didn’t know that he would get up in the mornings and get ready for work, even though he’d retired twenty years previously. They were blissfully unaware that he would cry wondering why mum had left him, because he was unable to remember that she’d died. They had no idea that he would wander around the estate at night, unable to remember where his house was.

But through all these terrible episodes, he was still dad. He was still funny and warm, and his eyes would sparkle as he told stories of his youth, and he’d delight in seeing friends and relatives. He was still the dad we’d always adored.

Sadly, though, his condition deteriorated alarmingly quickly. He soon became too vulnerable to live alone, and after a while of having wonderful carers to help him at home, it was obvious that for his own safety, he would have to enter residential care. By this point, he was too unaware of his surroundings to realise that he’d been moved, which was both a relief and a tragedy. Months later, after he fractured his skull, dad was even further impaired, and it was decided he would have to be cared for in a specialist nursing home.

The care assistants and nurses in the home were good, mostly, and no-one could fail to appreciate the enormity and difficulty of their jobs. They remained patient — for the most part — their good natures prevailing in the most trying of circumstances. I often wondered how they remained so cheerful and upbeat in the face of such immense pressure — their working days resembled endurance tests, I thought. I had great admiration for most of them. But today, the one assigned the unenviable task of feeding my dad, was running low on patience.

She struggled to hide her exasperation as he obstructed her efforts to feed him; he was agitated and distracted and even more intent on escaping his chair than usual, and spoonful after spoonful dribbled down his chin and onto his clothes.

I’d scarcely seen a more distressing situation. A few weeks previously dad had devoured every morsel of food put before him — he’d always been a strapping man, with a voracious appetite. Now he was being fed the most unappetising looking gunk imaginable, and I knew that there was nothing left for him. He’d been robbed of the ability to enjoy food, as well as so much else.

Bit by bit, dementia had stripped dad of everything he held dear. His speech, his ability to feed, bathe, and clothe himself had all disappeared. He’d not recognised me or my sister for months and had no idea he had grandchildren, or any idea at this point, about the life he’d led at all.

And now here he sat, pitiful, thin, dishevelled and devoid of his dignity.

My sister and I wondered how much more he could take; how much more the disease could engulf him before he finally succumbed. He was tough, and had survived sepsis, a fractured skull and numerous other very serious physical illnesses during late-stage dementia.

Pneumonia was to be dad’s final adversary. Often referred to as the old man’s friend — a reference to its ability to kill people suffering long-term disease swiftly and relatively painlessly — pneumonia was the illness to which dad finally succumbed.

The doctors insisted on treating the pneumonia with antibiotics, a decision that my sister and I opposed. It seemed unspeakably cruel to prolong his misery, and in my eyes, the pneumonia was an indication that his body had finally had enough. We were only concerned that he be comfortable, and to have dignity in death — dignity that had so cruelly eluded him over the final few months of his life.

The antibiotics were no match for pneumonia’s ravages, and shortly afterwards, my father was finally defeated. Harrowing and devastating though it was, his death meant his suffering was finally over.

Dad would have despised what dementia had done to him, despised what he had been reduced to, and despised having to live as a frail, confused, shadow of his former self. Much as his death broke our hearts, he was finally at peace.

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Freelance journalist, ghostwriter, memoirist

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