Caregiving

Still Alice

Lisa Genova · 2007

Genova is a neuroscientist who wrote this novel to give readers the experience of early-onset Alzheimer’s from the inside — from the perspective of Alice, a Harvard linguistics professor whose language is being slowly taken from her. What makes it essential for caregivers is precisely this: the chance to understand what the person you are caring for may be experiencing internally, even when they can no longer express it. Alice’s intelligence, her dignity, her fear, her flashes of clarity — all of it persists inside the illness. Reading this novel does not make caregiving easier. But it makes it more human. It reminds the carer that the person is still there, even when it doesn’t look that way from the outside.

The Diving Bell and the Butterfly

Jean-Dominique Bauby · 1997

Bauby was the editor of Elle magazine when a massive stroke left him with locked-in syndrome — completely paralysed except for the blinking of his left eye. He dictated this memoir, letter by letter, by blinking as an assistant recited the alphabet. What he produced is one of the most extraordinary documents of inner life ever written: proof that the self, the imagination, the capacity for humour and beauty and longing, survives almost any physical catastrophe. For caregivers tending to someone who seems unreachable — through dementia, stroke, severe illness — this slim and luminous book is an essential reminder of what may be alive inside the silence.

Final Gifts

Maggie Callanan & Patricia Kelley · 1992

Two hospice nurses with decades of experience between them write about what dying people communicate in the hours and days before their death — the symbolic language, the requests, the visions, the apparent conversations with those already gone. They call it “Nearing Death Awareness,” and their account of it is both scientifically grounded and profoundly moving. For family members and caregivers who have sat beside a dying person and felt confused or frightened by what they said or did, this book offers the most compassionate possible guide: these are communications, not symptoms. Your person is telling you something. This is how to listen.

Tuesdays with Morrie

Mitch Albom · 1997

Mitch Albom spent the last months of his old professor Morrie Schwartz’s life visiting him every Tuesday as Morrie died of ALS. What Morrie gave Albom during those visits — his thoughts on love, on work, on forgiveness, on aging, on death — became this book. It has been read by millions and dismissed by some as sentimental, but the criticism misses what it actually is: a record of what passes between a person who is dying and a person who loves them and is learning, for the first time, to be present in the presence of death. For those caring for someone at the end of life and wondering what to do with this time, what to say, whether any of it matters — Tuesdays with Morrie says: it matters more than anything.

“The truth is, once you learn how to die, you learn how to live.”

Crossing to Safety

Wallace Stegner · 1987

Two couples meet as young academics and stay bound to each other for forty years, through ambition, disappointment and finally through illness. Stegner writes the long, undramatic work of care better than almost anyone — the meals carried across town, the visits kept up, the friendship that simply does not leave. For carers who feel the years stretching ahead of them, this is a novel about staying.

Burnout: The Secret to Unlocking the Stress Cycle

Emily Nagoski & Amelia Nagoski · 2019

Most caregiving advice tells you to look after yourself and leaves it there. The Nagoskis explain the actual mechanism: dealing with the stressor is not the same as completing the stress cycle in your body, which is why you can solve a problem and still feel wrung out. Practical, warm and written for people who have been running on empty for a very long time.