Nicci Gerrard > Quotes

“We desire and love and hate and quarrel and deceive and weep – and in a short while we’re gone and our lives leave no trace, and all those tears and all that laughter might never have happened.”
― Nicci Gerrard, The Moment You Were Gone

“How was it that time only flowed in one direction, implacable and impersonal, dragging everyone with it, and couldn’t be stopped and turned back to that one moment?”
― Nicci Gerrard, Missing Persons

“To mourn someone who is still alive brings a particular, complicated pain. And often it brings guilt; to mourn someone who has not yet died is to consign them to a kind of death.”
― Nicci Gerrard

“How do you ever get over the love of a child? How do you get beyond it?”
― Nicci Gerrard, Solace

“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 Gerrard

“In her scorching memoir, Keeper, about the two years she lived with her mother-in-law and her rapidly worsening Alzheimer's disease, Andrea Gillies asks, 'What it is that dementia takes away?' And she answers herself: 'Everything; every last thing we reassure ourselves that nothing could take away from us.”
― Nicci Gerrard

“But for people who are at the end stages of dementia, death should not be fought against. It's a kindness. Let them go.”
― Nicci Gerrard

“As Atul Gawande writes, 'We end up with institutions that address any number of societal goals ... but never the goal that matters to the people who reside in them: how to make life worth living when we're weak and frail and can't fend for ourselves any more.”
― Nicci Gerrard

“Dementia is a particularly long farewell to the self. With most illnesses, death comes quite swiftly. With dementia, the flicker with which life ends is excruciatingly slowed.”
― Nicci Gerrard

“Death twitches. "Live," he says. "I am coming.”
― Nicci Gerrard

“We each live in a tiny pool of light, and around us lies the darkness of our un-seeing. We see what we look for and what we look at. (...) It is not possible to see the world we live in, only minute, shuttered portions of it where the beam of our attention falls. When I was a teenager, I noticed other teenagers. Pregnant, I suddenly saw all the pregnant women; then the babies; and then the world was full of small children and their exhausted parents; full of single mothers . . . No I see countless people who are frail and scared -- but that's only because I saw my father so frail and so scared.”
― Nicci Gerrard, The Last Ocean: A Journey through Memory and Forgetting

“There's an anticipated, ambiguous grief; a premature mourning of the self, or of the beloved other.
During dementia's last stages, a beloved person may be there and yet absent, a powerful reminder of the self's loss.”
― Nicci Gerrard

“My father went into hospital with leg ulcers that were slow to heal. There were strict visiting hours and then, with an outbreak of norovirus, a virtual lockdown of the ward, which meant that for days on end he was alone: nobody to hold his hand, speak his name, tell him he was loved; nobody to keep him tethered to the world. His leg ulcers were healed, but away from the home he loved, stripped of familiar routines and surrounded by strangers and machines, he swiftly lost his bearings and his fragile hold upon his self. There is a great chasm between care and 'care', and my father fell into it.”
― Nicci Gerrard

“In the US, there are apparently more than 2 million cases of elder abuse each year in nursing homes; one in ten old people will experience some form of abuse. People with dementia are much more likely to be abused than those without it. What's more, elder abuse is probably the most under-reported form of violence in the country.
It's the same depressing story in the UK, where the care system is under severe pressure, with many experts saying it is disintegrating; home-care workers are paid paltry amounts of money to spend tiny amounts of time in the homes of the old and vulnerable. There have been over 23,000 allegations of home-care abuse in the last three years - which means there must be more, because often the people who are being abused can't tell tales (which, of course, is partly why they are being abused). Many care homes are understaffed and operating within a punitive, impossible budget; the tens of thousands of allegations of abuse over the last three years include, neglect, physical abuse, psychological abuse and sexual abuse.
All over the world, in poor countries and rich ones, hundreds and thousands of old and vulnerable people live the last part of their life in fear and distress, in loneliness and in sorrow.”
― Nicci Gerrard

“Contents Beginnings 1. Facing Up 2. Getting Older 3. The Brain, the Mind and the Self 4. Memory and Forgetting 5. The Diagnosis 6. Shame 7. The Carers 8. Connecting through the Arts 9. Home 10. The Later Stages 11. Hospitals 12. At the End 13. Saying Goodbye 14. Death”
― Nicci Gerrard, What Dementia Teaches Us About Love

“It's like she's the living dead,' says Pauline. 'A long time ago, I lost her. I talk, and there's no reaction. Sometimes, when she laughs, or something in the tone of her voice - then I recognise the way we were twenty years ago. You fill in the gaps and the memories. Then she leaves again. You say goodbye all the time.”
― Nicci Gerrard

“I feel guilty for my mother's state,' she says. 'She is not dignified. She has lost everything she was. She is in this beautiful home. But every time I leave her I leave her alone. I feel guilty: I have left her there, knowing that she wanted to prevent living this way. She is helpless in every way and I am guilty all the time. And in some ways, it isn't good that she is round the corner, because she's too near me to distance myself from this feeling, which is overwhelming. And of course,' she adds, always scrupulously honest, 'it will be a relief to one day not have this feeling that I am leaving her there, in this beautiful place, in this awful situation.”
― Nicci Gerrard

“Each year, news stories reveal the neglect and abuse that goes on behind closed doors - because to be a professional carer is a woefully undervalued and underpaid occupation, and if someone can't remember they can't tell tales; and because as a culture we have infantilized and even dehumanized the old, frail and cognitively impaired.”
― Nicci Gerrard

“En toch dwaalde ze al die tijd in gedachten door de kathedralen van het bos, in die nog altijd witte wereld waar de uilen krasten in het donker en een vriend op sterven lag.”
― Nicci Gerrard

“There are days when the younger self accuses you. Is this who you wanted to be? Is this the life you wanted to live? What had happened to the books she had dreamt of writing, the journeys she had planned to take, the person she had thought to become? What had happened to that quiet, stubborn, fierce girl who promised herself freedom and adventure and who thought she could do anything?”
― Nicci Gerrard, The Twilight Hour

“It has become easier to live longer but harder to die well.”
― Nicci Gerrard

“The adult children who often choose the homes prioritise safety. For the people who have to live there, other things might be more important: autonomy, for instance, or sociability, or fun.”
― Nicci Gerrard

“In the end you have to choose who you will become. You are your life’s work. Every moment of every day makes you. Only at the end, when your story is over, do you know what you have created.”
― Nicci Gerrard, The Twilight Hour

“The mystery of what goes on inside the mind of another person becomes terrifyingly impenetrable in the final stages of dementia; twilight to pitch dark at the vanishing line between life and death.”
― Nicci Gerrard

“What a difference a letter makes. 'Home' is a small word meaning the centre of one's world, the place from which one sets out that is 'at the heart of the real'. 'A home' in many cases doesn't mean safety at all but removal and unbelonging. Home is domestic and personal; a home, however welcoming and homely, is professional and institutional. Home is where you are in control of your life; a home is where your life is partially or wholly arranged for you, and maybe not in the way that you desire. Home is where you live, and a home is usually the place you go before you die.”
― Nicci Gerrard

“You’re supposed to gain things as you grow older in return for the things that you lose. But what had she gained? Dignity? She hadn’t got that. Peace? No. Wisdom? It seemed unlikely. And what had she lost? Beauty, youth, innocence, possibility. Your past grows longer and your future shrinks. And you lose your parents and your children – often at the same time so that you go from being daughter and mother to being neither. What are you then?”
― Nicci Gerrard, The Moment You Were Gone

“Over the past few years I have visited a great many residential homes, at home and abroad, and each time I step over the threshold I feel an anticipatory lowering of the spirits, a kind of muted dejection.”
― Nicci Gerrard

“Hospitals are often at the centre of things ('choirs and MPs visit them'), but 'homes are on the margins', so there is often a sense of being 'shut away out of sight; of loneliness'. Old age can push people to the edge of society; dementia often pushes them right out of sight, and then out of mind. They are the missing persons.”
― Nicci Gerrard

“During dementia's end-game, a person goes to a place where we cannot follow them and can barely guess at. The bursts of lucidity that those with catastrophic memory loss can sometimes have are like bright, sharp flashes of lightning over a blasted landscape.”
― Nicci Gerrard