Caregivers, caregiving, and preventing or minimizing caregiver burnout

• Useful links
• Caregivers on caregiving
• Books for and about caregivers
followed by books about caregiving for elders
• A reading list of books on medicine, health care, and caregiving
• For your medical reference shelf
(and right below that a list of recommended cookbooks--good food that is also good for you)

Note that the word is "caregiving," not "caretaking."
Caretakers take care of something like a building or piece of property.

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Useful Links

• A Family Caregiver Speaks Up: "It Doesn't Have to Be This Hard" Suzanne Mintz (also available on Amazon)
• Age of Uncertainty (Roanoke, VA, blog with video stories about those who are aging, vulnerable, with Alzheimer's, etc)
• AgeWise Living (helping families resolve eldercare issues by choice, not crisis)
• Aging, end-of-life, and caregiver resources (Nancy Yanes-Hoffman)
• Alzheimer's Association
• Alzheimer’s Association online communities (share experiences, advice with those who have Alzheimer’s or care for someone who does)
• Alzheimer’s Caregiver Guide (National Institute on Aging)
• Alzheimer’s caregivers guide (many tips also helpful for people with other forms of dementia or traumatic brain injury)
• Alzheimer List (an online discussion group)
• Alzheimer's Facts and Figures (Alzheimer's Association)
• Alzheimer's Project shown on HBO (this series, appearing on HBO in May 2009, can also be viewed free online at this link).
• Alzheimer's Reading Room (caregiver Bob DeMarco's site, rich in current information, research, caregiver tools, advice, and insight into Alzheimer's disease)
• Alzheimer's, resources for caregivers (David Shenk's site for The Forgetting)
• Alzheimer's support groups (AARP)
• An Uncertain Inheritance: Writers on Caring for Family, ed. by Nell Casey
• AARP on Medicare questions
• Anatomy of medical error
• The Beneficial Effects of Life Story and Legacy Activities (Pat McNees, PDF file, Journal of Geriatric Care Management)
• Arts allow Alzheimer's patients to live in the moment (Mary Brophy Marcus,USA Today)
• Best books for Alzheimers (Paula Farris, Dementia Caregiving 101)
• Beyond Indigo (caregiving and terminal illness)
• Between Comfort and Care, a Blurry Line, by Sandeep Jauhar, MD (The New York Times)
• The Big Picture Approach to Aging and Caregiving (Charles Puchta urges us to consider the interlocking pieces in a person's life puzzle rather than merely tackle one isolated problem at a time)--click your way around this site!
• Books on the autism spectrum
• The boy in the plastic bubble and other stories of clinical research at NIH
• Brain injury organizations (Northeast Center for Special Care's links to websites related to brain injury, spinal cord injury, ventilator weaning, rehabilitation, cognitive therapy, neurobehavioral disorders, neurology, disabilities, independent living and more)
• The Bumpy Ride from Hospital to Home (Jane Gross, NY Times)
• CareCommunity (share experiences with a community of caregivers)
• Careflash (for simplifying communications about a major illness or hospitalization to a circle of friends and family)
• Caregiver.com (with special attention to Alzheimer's, bipolar disorder, schizophrenia. long-term care, and medication management)
• Caregiver organizations, information, advocacy and support fesources (useful NFCA links)
• A Caregiver's Bill of Rights
• Caregiving.com (articles about issues caregivers frequently encounter)
• Caregiving Resources (Marty Tousley's excellent page of links for caregivers, on her website GriefHealing)
• Caring Today (caregiver guides and other resources)
• Caring Connections (useful brochures on a range of topics, in PDF form)
• Caring Connections
• Caring for Tommy, Beth Macy’s account of how Linda Rhodes copes when illness (West Nile virus) precipitates her husband’s mental decline
• Center for Aging with Dignity (helpful series of brief articles on what's normal and what's not, common roles, phases of various processes, etc., connected with aging, caregiving, driving, and grieving)
• Children of Aging Parents (CAPS – support groups and newsletter focus on problems such as stress among siblings, caregiver burnout, etc.)
• Children of Aging Parents (scroll down, click on, and download, free, Aging Answers, by Valerie VanBooven, a registered nurse and professional care manager), a PDF file
• Coping with grief (terminal illness, BBC)
• Dementia Caregiving 101 (sisters Paula Farris and Lanette Stultz share what they learned caring for their mother)
• Eldercare Locator (national directory assistance service to help locate local support and resources for older Americans)
• Fact sheet on dementia (Family Caregiver Alliance)
• Fact sheets on caregiver issues and strategies
• Family Caregiver Alliance (many useful articles)
• Family Caregiving 101 (includes answers to 10 Questions)
• Eden Alternative (contending that elder living spaces should be habitats for humans, not sterile medical institutions)
• Family Care Navigator (state-by-state help for family caregivers)
• Fighting a Rare Illness — Together (Meg Massey, Parade, 2-13-09)—the parents of a child with Barth’s syndrome emphasize the importance of connecting with others struggling to deal with the same disease.
• Finding help for caregivers (Eileen Beal)
• For Families of the Ailing, a Brief Chance to Relax (John Leland, Health, New York Times)
• Frequently asked questions about caregiving (caregiving.com)
• Frequently asked questions about hospice (Caring Connections)
• Gail Sheehy on the rough passage of caregiving (Paul Kleyman, Aging Today), part 1
• Get­ palliative care (care to comfort, not to cure)
• The Gift of Time by Marc Lichter (Caring Today)
• The good death (Elizabeth Grice asks if we have lost the art of dying well)
• A Good Enough Daughter (Sara Myers' blog about taking care of her mother, whose increasing dementia is one concern)
• Help Wanted: Other Woman, by Alix Kates Shulman (the author’s 79-year-old brain-damaged husband believes he is having an affair with his caregiver—why else would she hold his hand when they go out?)
• HBO's Alzheimer's Project (this excellent series, being shown on HBO in May 2009, can also be viewed free online. Follow this link.
• How to communicate your loved one's symptoms during a crisis (ABTA Orientation to Caregiving)
• If the Schools Won’t Help Us, We Have to Help Ourselves (by Lisa Sweetingham, Parade – Randy Steinberg’s parents realized that the schools weren’t helping with the special needs of their son — an “emotionally fragile young man who had trouble learning in traditional classrooms and was prone to violent outbursts when bullied or picked on” — so they took matters into their own hands.
• In sickness and in health (Dick Gordon of PBS interviews Sam Woods about his wife's financially devastating death from breast cancer)
• L'Arche ("relationship, transformation")--L’Arche faith-based communities are family-like homes where people with and without disabilities share their lives together
• Living with an illness (tips from Caring Connections)
• Marc Lichter's blog about caregiving (Caring Today)
• Medication management form (Next Step in Care, PDF file to print out)
• Memoirs of illness, crisis, differentness, and survival
• Mistaken attachments, Alzheimer's, and the O'Connor family's decision to bring the subject out of hiding
• Mothering Mother -- video interview with Carole O'Dell, author of Mothering Mother (Melissa Long, CNN)
• Movies and videos dealing with illness, death, dying, and healing (comments about them, on the Literature, Arts, and Medicine Database), click on the titles
• National Association of Professional Geriatric Care Managers (NAPGCM) (GCMs can help assess elders' long-term care needs, find them a place to live, and help them navigate the health-care system--for example, hiring private nurses, as needed, for fees that range from $80 to $200 an hour)
• National Family Caregivers Association (NFCA)
• Next Step in Care
• Next Step in Care (guides and checklists for caregivers)
• Nonpharmacological management of agitated behavior in persons with Alzheimer’s disease and other chronic dementing illnesses
• Orientation to Caregiving: A Handbook for Family Caregivers of Patients with Brain Tumors (ABTA, a free PDF download of the book, chapter by chapter)
• Overtreated : Why Too Much Medicine Is Making Us Sicker and Poorer (excerpts from Shannon Brownlee’s new book)
• Pain Rating Scale (for use with patients with cognitive impairment, ABTA, PDF file)
• Personal stories of schizophrenia (WFSAD)
• Pioneer Network (advocates for culture change in eldercare models, from long-term nursing home care to short-term transitional care to community-based care)
• A Place for Mom (search for senior care)
• Program of All-Inclusive Care for the Elderly (PACE), an optional benefit under Medicare and Medicaid that helps older people frail enough to meet state standards for nursing home care stay in their home.PACE offers and manages all the medical, social and rehabilitative services enrollees need to preserve or restore their independence, stay in their homes and communities, and maintain their quality of life. Listen to this interview on Kansas Public Radio about PACE. There is evidence that this new model of care is effective, but it is not yet widely available. Here is a current list of PACE-provider organizations.
• Q&A for caregivers (Medicine.net)
• Recognizing Alzheimer's (symptoms)
• Relaxation exercises, online (requires Quicktime or RealPlayer software to listen)
• Setting Limits and Boundaries (Holly Whiteside, Transforming Caregiving)
• Senior Bridge (comprehensive care management, to help people stay at home--available in several cities)
• Simplifying Life: The Housekeeping Matrix (Holly Whiteside, Transforming Caregiving)
• Stories about patients in NIH clinical trials (most of these written by Pat, none ending in death)
• Ten Things Caregivers of People with Dementia Ought to Know (Beth Macy, Age of Uncertainty blog)
• They're Your Parents Too! (Francine Russo's site on how siblings can survive their parents' aging without driving each other crazy)
• Traumatic brain injury
• U.S. trauma centers that treat traumatic brain injury (TBI)
• Useful medical websites
• Well Spouse Association, which offers a complimentary PDF issue of its newsletter Mainstay
• What are we going to do with Dad? (geriatrician Jerald Winakur, Health Affairs, on the course of his father’s care and the lack of U.S. health care policy on long-term care)
• What kind of assistance should I provide (AgingUSA.com)
• What caregivers say (Caring Today, after survey of 500 caregivers
• Who Takes Care of Mom? by Francine Russo (Time, 2-1-2010), author of They're Your Parents, Too!: How Siblings Can Survive Their Parents' Aging Without Driving Each Other Crazy
• WorkLife Law (useful on Family and Medical Leave Act)

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Caregivers on caregiving

I highly recommend the book To Love What Is by Alix Kates Shulman, a beautifully written account of the life she found herself living after her husband, Scott York, fell from a sleeping loft and suffered traumatic brain injury (TBI). A beautiful memoir, both of love and intimacy between two independent spirits and of the difficulties of caring for a patient who can't remember what you just said and did together. I've turned down the corners of many pages, for later reference!

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).

• And Thou Shalt Honor: The Caregiver's Companion, ed. Beth Witrogen McLeod (foreword by Rosalynn Carter)
• The Boy in the Moon: A Father's Search for His Disabled Son by Ian Brown. Superb memoir of Brown's relationship with his son, Walker, born with a rare genetic disorder that leaves him profoundly developmentally disabled. Book available through Amazon Canada (based on Brown's superb series, The Boy in the Moon in Canada’s Globe & Mail, available online).
• Brain, Heal Thyself: A Caregiver's New Approach to Recovery from Stroke, Aneurysm, and other Brain Injuries, by Madonna Siles , Lawrence J. Beuret
• The Caregiver's Compass: How to Navigate with Balance & Effectiveness Using Mindful Caregiving by Holly Whittelsey Whiteside (how to apply life coaching principles to stay balanced during the difficult moments of caregiving, based on her own experience with her mother and as a life coach--especially like her matrix, on p. 72, for weighing what various activities cost in terms of time, money, energy, and what they return for you and the person you're caring for)
• Caregiving: The Spiritual Journey of Love, Loss and Renewal, by Beth Witrogen McLeod
• Caring for Your Parents: The Complete AARP Guide by Hugh Delehanty, Elinor Ginzler, with a foreword by Mary Pipher
• 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
• 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
• I'll Be in the Car - One Woman's Story of Love, Loss and Reclaiming Life by Annette Januzzi Wick
• Finding Life in the Land of Alzheimer's: One Daughter's Hopeful Story by Lauren Kessler (weighed down by guilt from her response to her mother's Alzheimer's 8 years earlier, Kessler takes a minimum-wage job as a resident assistant in a facility for Alzheimer's patients--and comes to see the positive side of life for those patients)
• Making Rounds with Oscar: The Extraordinary Gift of an Ordinary Cat by David Dosa (about a cat who senses death and stays to comfort the dying, but also about Alzheimer's and geriatric care and nursing homes and being there, at the end of life)
• Mommy I’m Still in Here: Raising Children with BiPolar Disorder by McLaughlin, Kate (a mother’s compelling, authentic account of a ravaging mental illness)
• Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir by Carole O’Dell
• No Small Miracles: Heartwarming, Humorous, and Hopefilled Stories from a Pediatric Chaplain, by Norris Burkes
• Slipping Away by Luree Miller (about TIAs)
• Still With Me: A Daughter's Journey of Love and Loss by Andrea King Collier (how a mother and daughter coped with terminal ovarian cancer--an account evoking both tears and laughter)
• The Story of My Father by Sue Miller (a portrait of her father, written as Alzheimer's changed him)
• That Went Well: Adventures in Caring for My Sister by Terrell Harris Dougan (a nostalgic look back at life with her mentally challenged sister, Irene, and how she handled things when her parents were no longer able to care for her at home)
• The Thirty-Six Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life, by Nancy L. Mace and Peter V. Rabins, MD
• A Three Dog Life, by Abigail Thomas (wonderful memoir about reinventing a marriage after a hit-and-run driver leaves her husband so severely brain damaged that she is forced to place him in a special institution for TBI patients)
• To Love What Is, by Alix Kates Shulman (a wonderfully written memoir about loving and caring for a husband with traumatic brain injury and no short-term memory)
• 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
• Welcome to the Departure Lounge: Adventures in Mothering Mother by Meg Federico (a frank, poignant, humorous account of both the love and frustration associated with managing a suddenly infantile, erratic mother who is married to an abusive man with Alzheimer's)

Books about Caregiving for Elders
• The Complete Eldercare Planner: Where to Start, Which Questions to Ask, and How to Find Help, revised ed., by Joy Loverde
• The Elder Law Handbook: A Legal and Financial Survival Guide for Caregivers and Seniors
• Elder Care: What to Look For, What to Look Out For!, by Thomas M. Cassidy (which includes, among other things, useful checklists)
• Eldercare 911: The Caregiver's Complete Handbook for Making Decisions by Susan Beerman, Judith Rappaport-Musson
• Eldercare for Dummies by Dr. Rachelle Zukerman
• The Eldercare Handbook: Difficult Choices, Compassionate Solutions by Stella Henry and Ann Convery
• Eldercare 911: The Caregiver's Complete Handbook for Making Decisions by Susan Beerman, Judith Rappaport-Musson
• Finding Life in the Land of Alzheimer's: One Daughter's Hopeful Story by Lauren Kessler (weighed down by guilt from her response to her mother's Alzheimer's 8 years earlier, Kessler takes a minimum-wage job as a resident assistant in a facility for Alzheimer's patients--and comes to see the positive side of life for those patients). See also her earlier book Dancing with Rose: Finding Life in the Land of Alzheimer's
• Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste

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Gather all information below and keep in one or two places (which you tell key people about):
• Self and family (including full names; dates of birth, marriage, divorce, death; social security numbers)
• Important telephone numbers
• Location of all key documents
• Medical history
• Insurance (life, health, home, etc.)
• Legal
• Employment history
• Income, expenses
• Net worth (financial assets and liabilities)
• Inventory of real estate and personal property
• Bank accounts
• Retirement accounts
• Passwords for various online accounts
• Funeral preferences, final arrangements

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A READING LIST OF BOOKS ON MEDICINE, HEALTH CARE, AND CAREGIVING -- FOR PATIENTS AND CAREGIVERS

• The Story of My Father by Sue Miller (a portrait of her father, written as Alzheimer's changed him)
• An Uncertain Inheritance: Writers on Caring for Family edited by Nell Casey. Wonderful writing, excellent insights into the complexities both of caring and of being cared for, during an illness.
• An Unquiet Mind: A Memoir of Moods and Madness by Kay Redfield Jamison (about manic depression).
• Better: A Surgeon's Notes on Performance by Atul Gawande
• Brain Surgeon: A Doctor's Inspiring Encounters with Mortality and Miracles by Keith Black
• Complications: A Surgeon’s Notes on an Imperfect Science by Atul Gawande
• Emergency!: True Stories From The Nation's ERs by Mark Brown
• Hot Lights, Cold Steel: Life, Death and Sleepless Nights in a Surgeon's First Years, Michael J. Collins memoir of his grueling surgical residency at the Mayo Clinic
• How Doctors Think by Jerome Groopman
• How We Die by Sherwin Nuland (excellent descriptions of exactly how the various body systems fail, when they fail -- a primer even for healthy readers)
• Illness as Metaphor: AIDS and Its Metaphors by Susan Sontag
• Intern: A Doctor's Initiation by Sandeep Jauhar
• In the Country of Hearts: Journeys in the Art of Medicine by John Stone
• Just Here Trying to Save a Few Lives: Tales of Life and Death in the ER by Pamela Grim
• Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, by Laurie Edwards
• Life Support: Three Nurses on the Front Lines (The Culture and Politics of Health Care Work) by Suzanne Gordon, author of Nursing Against the Odds: How Health Care Cost Cutting, Media Stereotypes, And Medical Hubris Undermine Nurses And Patient Care.
• The Man Who Mistook His Wife for a Hat and Other Clinical Tales, by Oliver Sachs
• The Measure of Our Days: New Beginnings at Life's End by Jerome Groopman
• Medical Detectives, by Berton Roueche
• Medical links for smart patients and smart parents: information about health care and medical conditions
• My Own Country: A Doctor's Story , Abraham Verghese's memoir of being a doctor during the early years of AIDS.
• On Call: A Doctor's Days and Nights in Residency by Emily R. Transue
• Second Opinions: Stories of Intuition and Choice in the Changing World of Medicine by Jerome Groopman
• Silence Kills: Speaking Out and Saving Lives , edited by Lee Gutkind (essays about communication failures that lead to potentially lethal medical error)
• Something for the Pain: Compassion and Burnout in the ER by Paul Austin ("tells it like it is")
• Unholy Ghost: Writers on Depression, ed. Nell Casey
• When the Air Hits Your Brain: Tales from Neurosurgery by Frank Vertosick Jr.
• You: The Smart Patient, An Insider's Handbook for Getting the Best Treatment, by Drs. Michael F. Roizen and Mehmet C. Oz, with the Joint Commission (one of a series by the charismatic Oprah favorite, Dr. Oz, and the knowledgeable Dr. Roizen)

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FOR YOUR MEDICAL REFERENCE SHELF
Although you can learn a lot online through sites such as Medline Plus and WebHealth.com, you may need a good general reference book at home, too. Here are a few possibilities:

• The Body Clock Guide to Better Health by Michael Smolensky and Lynne Lamberg
• The Cornell Illustrated Medical Encyclopedia: The Definitive Medical Home Reference Guide (Weill Cornell Health Series) by Antonio Gotto
• The Johns Hopkins Complete Home Guide to Symptoms & Remedies by Editors of The Johns Hopkins Medical Letter Health After 50
• The Johns Hopkins Consumer Guide to Medical Tests: What You Can Expect, How You Should Prepare, What Your Results Mean by Simeon Margolis
• Know Your Body: The Atlas of Anatomy by Emmet B. Keefe
• Mayo Clinic Family Health Book, 3rd edition, by the Mayo Clinic
• Mosby's Manual of Diagnostic and Laboratory Tests, by Kathleen Pagana and Timothy Pagana (helpful in interpreting lab test results)
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IF YOU ARE WHAT YOU EAT, LOOK AT THESE, TOO:

• The New American Plate Cookbook, a good-for-you cookbook filled with delicious recipes from the American Institute for Cancer Research
• Fast Food Nation: The Dark Side of the All-American Meal, by Eric Schlosser (read this and then start cooking from The New American Plate)
• The Food You Crave:Luscious Recipes for a Healthy Life by Ellie Kreiger (the turkey meat loaf is great)
• The Omnivore’s Dilemma: A Natural History of Four Meals, by Michael Pollan, whose book In Defense of Food: An Eater's Manifesto, which will make you think twice about the labels indicating "healthy" food (e.g., "low-fat milk").
• Animal, Vegetable, Miracle: A Year of Food Life (P.S.), by Barbara Kingsolver.

Bottom line: Shop the periphery of the supermarket; that's where all the natural foods are. The center of the market is full of the processed foods that are stripped of some nutrients and loaded with garbage that increases profits for stores and manufacturers while burdening you with extra calories and weight.
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