DYING: A Book of Comfort

Companion website about dying, bereavement, loss, grief — and aging with spirit

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Caregiving, caregivers, and needing care

I recommend: An Uncertain Inheritance: Writers on Caring for Family, edited by Nell Casey--really wonderful narrative essays on family experiences in the no-man's-land of illness, some written by the caregivers, some by those being cared for. Helen Schulman writes frankly about how unrewarding caring for her dying father was. Ann Harleman writes of how her husband's multiple sclerosis affects the quality of their marriage. Abigail Thomas writes about dealing with her husband's traumatic brain injury after being hit by a car. Julia Glass, who writes about dealing with breast cancer while also raising two small sons, writes: "I began to understand that taking care of someone doesn't always mean doing something for that person . . . Being is just as important as doing. Being awake. Being present in the next chair. Being funny. Being smart in a surprising, useful way. Being sympathetically perplexed. Being a mirror for the expression of pain." Andrew Solomon, author of The Noonday Demon: An Atlas of Depression, writes beautifully here of the humbling experience of being cared for as an adult by his father, admitting, "He meant his assurances to be uplifting, but sometimes they felt like trivializations of my very real condition. I was not going to be fine and I wanted him to acknowledge that. I was indebted to him, but my appreciation teetered constantly at the brink of ingratitude."


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Books for and about caregivers

Other titles of possible interest, many of which I have not personally reviewed yet, follow. Tell me which titles should or should not be here, in your personal experience -- which books you have found particularly useful at helping you care for someone seriously ill (or caring for yourself, when burning out from caregiving). Note that the word is "caregiving," not "caretaking" (caretakers take care of something like a building or piece of property).

Caregiving: The Spiritual Journey of Love, Loss and Renewal, by Beth Witrogen McLeod

I'll Be in the Car - One Woman's Story of Love, Loss and Reclaiming Life by Annette Januzzi Wick

And Thou Shalt Honor: The Caregiver's Companion, ed. Beth Witrogen McLeod (foreword by Rosalynn Carter)

The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own, by Gary Barg

Helping Yourself Help Others: A Book for Caregivers, by Rosalynn Carter and Susan Ma Golant

Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir by Carole O’Dell

Unholy Ghost: Writers on Depression, ed. Nell Casey

We Carry Each Other: Getting Through Life's Toughest Times, by Eric Langshur, Sharon Langshur, Mary Beth Sammons

Dancing with Rose: Land in the Life of Alzheimers by Lauren Kessler

Death in Slow Motion: My Mother's Descent into Alzheimer's, by Eleanor Cooney

No Small Miracles: Heartwarming, Humorous, and Hopefilled Stories from a Pediatric Chaplain, by Norris Burkes

Brain, Heal Thyself: A Caregiver's New Approach to Recovery from Stroke, Aneurysm, and other Brain Injuries, by Madonna Siles , Lawrence J. Beuret

Caring for Your Parents: The Complete AARP Guide by Hugh Delehanty, Elinor Ginzler, with a foreword by Mary Pipher

Slipping Away by Luree Miller (about TIAs)
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"I know why Tony Snow, George W's press secretary, called his bout with colon cancer, 'the best thing that ever happened to me.' And why my friend, Gilda Radner said about cancer, 'If it wasn't for the downside, everyone would want it.'

"The best side-effect of fighting a life-threatening disease is learning how to live.

"When you're made frighteningly aware of how little time you may have left, learn what is important: family, friends and helping others."
--Joel Siegel, after ten years of fighting colon cancer


"Happiness is someone to love, something to do, and something to hope for."
-Chinese Proverb

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