We lost Dad in his mind… but dementia could not steal our memories

In a profoundly moving elegy, a top author offers a message of hope: We lost Dad in the ruined cloisters of his mind … but dementia could not steal our memories

  • Nicci Gerrard recounts her father, John, living with Alzheimer’s for ten years
  • She says he went into hospital healthy and came out inarticulate and immobile 
  • She questions why the scandalous state of dementia care continues
  • Her family paid for care that allowed John to spend his last nine months at home 
  • Nicci started John’s Campaign following her father’s hospital experience  

When I think of my father, I see him running around the garden with a hose, chasing his grandchildren . . .

I see him throwing branches onto a bonfire. I see him crouched by a rock pool, absolutely attentive and entranced. I see him dancing with my mother in his beautiful soft dance shoes. And I see him lying in a bed, propped up on pillows, at the long drawn-out end, a ghost in his own life.

We were fortunate enough as a family to be able to pay for the round-the-clock professional care that made it be possible for my father to spend his last nine months in his own home, surrounded by familiar things and by those who loved him.

Most people, of course, cannot afford this, or even if they can it is often not possible to give the ill person the level of care they need. Sometimes a residential home is the best place, the only place, for them to be — and if some are terrible and unhomely places, many are spaces of refuge and unflagging kindness.

Nicci Gerrard (pictured with her father, John, on holiday in Sweden in 2013) explores the state of dementia care, following the death of her father who lived with Alzheimer’s for ten years

Yet, as this paper has illustrated, families that place their frail and vulnerable loved ones in homes may not realise that they could be subsidising the care of others who have no funds and are at the mercy of state provisions.

There is a hidden gulf between what the state provides and what the illness costs. The scandal is not just that some people who can afford the cost of care are unknowingly also paying to keep this gap hidden from public view; the scandal is that in one of the richest countries in the world, men and women at the end of their lives are dying in poverty.

Dementia is the illness we fear above all others, and the suffering it causes spreads from the individual to the family. It should be our collective responsibility like any other disease, yet far too often people deal with it alone, bearing the unbearable.

Sometimes, the love of the individual carer can be put under unimaginable strain, leading to soul-sickness and despair — even to the point that killing the beloved other seems like the only option. That’s what happened earlier this year, when the bodies of Tony Meadows and his wife Paula were found at their home in a small village in Berkshire.

The couple were in their 80s; he was a former Concorde pilot. Paula Meadows had dementia. So Tony Meadows killed his wife, then killed himself, in a final act of love and desolation, leaving behind three devastated children and a shocked community.

This is not an isolated incident. Two years ago, a 95-year-old man was spared a prison sentence for trying to bludgeon his beloved 88-year-old wife (‘the most beautiful woman in the world’) to death with a lump hammer and a ceramic pan after she repeatedly begged him to kill her.

‘And I haven’t managed to,’ he said to the police officers who came to their home, ‘and now I have just increased her suffering . . . I would happily be a murderer. Please tell me I killed her.’

To want to die rather than be dependent and helpless; to try to kill the person you love the most because their future seems mere torment: what does this say about our culture?

Nicci (pictured) recalls her family reading out a list of things her father loved at his funeral, she describes him as honourable and clever

So I know that if my father was unlucky to have the illness, he was lucky it did not savagely demolish him or tear the family apart. No one should have to deal with dementia alone.

At his funeral, which my three siblings and I organised and conducted, each of us read a poem. My elder sister read Gerard Manley Hopkins’s Pied Beauty, because she and my father shared a deep affinity with the natural world.

My younger sister read John Masefield’s Sea Fever because, like my father, she loves sailing and the sea. My brother chose Henry Reed’s war poem, Naming Of Parts, which was one of my father’s favourites and which he used to read to us.

And I turned to Thomas Hardy’s Afterwards, the poet’s beautiful elegy to himself as a man ‘who used to notice such things’.

At that service, full of his friends and family, full of memories and the music and words he loved, it seemed he was still among us. And of course he was — we carry him in our hearts.

My father was courteous, honourable and modest. He was a doctor, a scientist, a practical, clever man who went to work every morning in a nice suit and a tie done up just so.

He could read maps, mend china, fix the electrics, build fences, keep life in good order. He was also quite shy, eccentric and dreamy; he believed in water divining and the power of dreams.

At the funeral we read out a list of things that he had loved — boats, dancing, English puddings, red wine, crosswords, cats.

He had a deep and nourishing feeling for nature. In many of my most vivid recollections, he is staring into a pond to look at water boatmen, cupping a butterfly in his hands to take it to safety, or stooping to identify a wildflower.

I remember how as a child he would take me to listen to the dawn chorus in the woods near our house and standing in the dim light he would tell me which song was the blackbird’s, which the song thrush.

He loved his home, his circle of friends, his children and grandchildren; above all he loved his wife, our mother, who he was married to for 61 years.

These things that he loved and was comforted by sustained him during the ten years he lived with Alzheimer’s.

He worked in the garden, watered the tomatoes and fed the plain brown birds that came to the bird table. He walked by the river, teased his grandchildren, told stories about his past that seemed to become ever more vivid as his memories of yesterday faded.

Looking back on the decade her father spent with dementia, Nicci (pictured) says he lived well and was happy 

My father was unlucky to have dementia, but was lucky to have a kind that came gradually, in almost imperceptible incremental steps, Grandmother’s Footsteps in the mind, and that did not alter his personality (some forms of the illness are much crueller, bringing violence with them).

For the most part, he lived well during that decade, and was happy.

When I look back at that time I think of family canal holidays in France — 20 or more of us in two boats chugging along the beautiful, tree-lined stretch of water and often my father at the wheel, his white hair blowing in the wind.

Or Christmases when he would still carve the turkey, pour the wine, hold up his glass in a toast.

Or that time in Sweden when he swam in the lake at twilight and sang to himself, as if he was the only person left in the world.

Or my parents’ 60th wedding anniversary, when we hired a small marquee and made an absurd English tea (miniature scones and eclairs and cucumber sandwiches) and played the music they loved in their courting days; he and my mother danced together while we stood round and cheered (wept).

He was leaving us, leaving himself, but very slowly. And it was sad and sometimes desolating, of course it was, but it didn’t feel scary, usually, or grim. It was a quiet and very common tragedy, not a horror story.

But then came a time when he was no longer living well with dementia, but dying with it. The change ambushed all of us. He went into hospital to have leg ulcers treated. The hospital had strict visiting hours and, with an outbreak of norovirus, a virtual lockdown. There were days on end when we were not allowed to see him at all.

At home, my father knew where he was; more important, he was surrounded by familiar faces. Away from home, he was in a strange environment of long corridors, machines, rattling trolleys, people in uniforms putting thermometers and pills in his mouth.

With no one to make sure he ate, drank, moved around; no one to talk to him, hold his hand, stroke his hair, he quickly became untethered from the world he loved, and was lost.

Hindsight is a very cruel wisdom. We did not know then how dangerous hospitals are for people who are frail, confused and vulnerable, or how essential it is that they be treated as people as well as patients.

Nicci (pictured) recalls her father going into hospital healthy for treatment on his leg ulcers but coming out immobile, inarticulate and helpless

Official figures have recently revealed nearly half of NHS trusts are providing inadequate care for those with dementia.

My father went into hospital healthy, mobile, articulate and contented. He came out skeletal (he lost about a third of his body weight in four-and-a-half-weeks), immobile, inarticulate (he could barely utter a word), helpless.

At home he lay in a little room downstairs, where he could look out at his garden.

He was fed and lost that starved look — but he never walked again. There was music playing in his room. When we visited, we read poetry and held his hand.

Occasionally, he would have a burst of lucidity and be able to put together a simple sentence.

Once, when a French carer asked him in her native language how he was, he answered to everyone’s great surprise, ‘Tres bien merci’: an odd little fragment of memory.

He didn’t recognise all of us, but I think he recognised that he was with people who loved him.

Sometimes we managed to get him into a wheelchair and take him outside so he could see the flowers and trees and feel the seasons turn: late winter, with violent storms and floods, spring and then summer; and as autumn edged towards winter, he died.

I don’t think anyone’s really ready for the death of someone they love, however prepared they think they are — but I know that this death was a kindness. He was old, ill, lost to himself, and had lived beyond his time.

My father’s story is just one among many thousands of stories. There are 850,000 people in the UK diagnosed with dementia; about the same number again are thought be undiagnosed.

There are nearly a million carers, unpaid, unrecognised and unsung, often old and ill themselves.

Between one in three and one in four hospital beds are occupied by a person with dementia. One in six people over 80 will get it. If it’s not you or me, it’s someone we love.

Yet it remains a largely hidden illness, played out behind closed doors, in houses and hospitals and residential homes. It is all around us and among us, yet we don’t properly see it — not until it knocks at our own door and forces its way in.

Nicci (pictured with family) says death restored her father to all the selves he had ever been, she hopes he wasn’t aware of what happened to him

Perhaps that is why the scandalous state of dementia care continues — because those affected cannot speak for themselves, while those who care for them have no energy to do more than keep their loved one alive and safe, if they are lucky enough to have the resources even to do that.

Either way, it is surely the only illness for which we force society’s most vulnerable people to stump up the money for their own care — and even contribute to that of others not lucky enough to have the funds themselves.

Because of what happened to my father when he was in hospital, I started John’s Campaign to seek more compassionate care when a person with dementia has to leave home. I’ve spent much of the past four years meeting people whose lives are connected to dementia — nurses, doctors, scientists, above all those living with the illness and those who care for them. Almost everyone has a story.

And I’ve been thinking about what the illness means: what is it to have a self, and then to lose it? Who are we when our memories fall away?

Above all, I’ve been thinking about what dementia teaches us about being human. We live in a world that values autonomy, independence, youth, purpose, vigour and health.

What happens when we lose all of that and become vulnerable, defenceless, at the mercy of the people who love us and dependent on the kindness of strangers? How do we as a society value and care for those going through this terrifying transition?

It’s important to realise the situation is not hopeless — that stepping in to provide proper care and support, and helping people to stay in their homes, can make a real and sizeable difference.

People can live well for a long time after diagnosis, and one of the things I’ve come to understand is how much of what is terrifying about the illness is the way we, as a society, view and treat those who have it.

There are terrible stories about cruelty and neglect — and extraordinary ones of rescue.

For many, it still carries a shame and a profound loneliness. Yet dementia — all the many and various forms of dementia — is an illness: a complex brain condition.

One day there will be a cure, and I think we will look back on this time with a kind of bewilderment: how did we let hundreds and thousands of vulnerable men and women live the last years of their lives like this?

My father died with dementia, of dementia. At his end, he was entirely helpless. I do not know what was happening in the ruined cloisters of his mind; I hope he didn’t know what had happened to him.

Death restored him. He became all the selves he had ever been.

Bit by bit in the years after he died, he returned to me: healthy and strong and smiling and whole; turning the soil in the garden, drinking his red wine, feeding the birds, peering into rock pools, building the bonfire, dancing with my mother, crouching down beside a wildflower and staring, entranced.

There he is again. There he will always be.

What Dementia Teaches Us About Love by Nicci Gerrard (Allen Lane, £16.99)

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