• The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here (61.9KB)
• Best books for Alzheimers (Paula Farris, Dementia Caregiving 101)
• Between Comfort and Care, a Blurry Line, by Sandeep Jauhar, MD (The New York Times)
• The Big Picture Approach to 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). See other articles on the 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)
• Care gap looms large for aging baby boomers (Cynthia Ramnarace, Reuters, 7-2-12)
• Caregiver.com (with special attention to Alzheimer's, bipolar disorder, schizophrenia. long-term care, and medication management)
• Caregiver stories to laugh about, 2011 (Care2.com). See also Top 25 Caregiver Stories of 2010: Funny Things Elderly Parents Do (Marlo Sollitto, AgingCare.com). A chance for caregivers to laugh at their situation.
• The Caregiver (James S. Liao's blog, The Caregiver/The Second Cancer Patient). With entries such as The Faraway Caregiver
• Caregiver organizations, information, advocacy and support resources (useful NFCA links)
• CaregiverProducts.com (daily living aids for in-home care -- for example, these handwriting aids and gadgets for people who have trouble writing
• A Caregiver's Bill of Rights
• Caregiver Resource Network (info and resources for family and professional caregivers, including Caregivers' corner radio programs, mp3 files you can listen to online)
• Caregiver Resources: 13 Tools To Help Reduce Stress This Holiday Season (Rebecca Klein, Huff/Post50, 11-20-12)
• A Caregiver's Wish List (Amy Goyer, AARP, 12-9-11). Many suggestions of things you can do to help a caregiver, in these broad categories: en empathic ear, positive reinforcement, practical help, connection, and fun. "The gifts caregivers most want are not big-ticket items. They are the things that soothe our souls, give us a smile and make us feel less alone."
• A caregiver's sacrifice (Beth Macy's account of how Linda Rhodes copes when illness--West Nile virus--precipitates her husband’s mental decline)
• Caregiving.com (blogs, webinars 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 an Ill Spouse, and for Other Caregivers (Alix Kates Shulman, NY Times, 5-9-11 explains how effective a caregivers' support group is, and why)
• Caring for Elderly Parents. A geriatric care manager can help long-distance caregivers (Lisa C. Deluca, Caregiver Support, 7-21-08)
• Caring for the Caregiver (by Sheree Crute, Compass Elder Care Specialists, reprinted from AARP)
• 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)
• Checklists and Forms (National Caregivers Library), about assisted living (various aspects), continuing care, home modification, nursing homes, hospice care, net worth calculation, appointment information, funeral planning, etc.)
• 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)

• Daddy Issues (Sandra Tsing Loh, The Atlantic, March 2012). "Why caring for my aging father has me wishing he would die."
• Dear Francy, Senior Care Tips for Care Giving Family and Spouses (blog of Francy Dickinson, with a special focus on Alzheimer's)
• Dementia Care Central (dealing with various forms of dementia, including Alzheimer's disease, vascular dementia, Lewy body dementia, and frontotemporal dementia or FTD)
• Dementia Caregiving 101 (sisters Paula Farris and Lanette Stultz share what they learned caring for their mother)
• Dementia Care Central (dealing with various forms of dementia, including Alzheimer's disease, vascular dementia, Lewy body dementia, and fronttemporal dementia or FTD)
• Early warning signs that Mom or Dad may need help (National Association of Geriatric Care Managers)
• Eden Alternative (contending that elder living spaces should be habitats for humans, not sterile medical institutions)
• Eldercare Locator (national directory assistance service to help locate local support and resources for older Americans)
• The Elder Care Network (a LinkedIn group)
• Fact sheet on dementia (Family Caregiver Alliance)
• Fact sheets on caregiver issues and strategies
• Family Caregiver Alliance. You'll find many useful articles, including
~Hospital Discharge Planning: A Guide for Families and Caregivers
~Durable Powers of Attorney and Revocable Living Trusts
~End-of-Life Decision-Making
• Family Caregiver Agreements: When a family member is “paid” to be a personal caregiver (Linda Fodrini-Johnson, National Assoc. of Geriatric Care Managers)
• Family Caregiving 101 (includes answers to 10 Questions)
• 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)
• 5 Ways to Cut Elder-Care Costs (Lisa Scherzer, SmartMoney, February 13, 2009, reprinted by Compass)
• Food and meal services (AGIS listings include Meals on Wheels, Brown Bag Programs, Pantries and Food Banks, Food Stamps and Vouchers,
• For Dying People, A Chance To Shape Their Legacy (Julie Bierach, Weekend Edition, NPR, 4-9-11). Imagine that you've just been told you have only a short time to live. What would you want your family and community to remember most about you? In St. Louis, a hospice program called Lumina helps patients leave statements that go beyond a simple goodbye. At the website of BJC Palliative Home Care and Hospice you can download a caregiver instruction manual (PDFs) and a PDF of Courtney Strain's What you can do when a friend (like me) faces the end of life.
• For Families of the Ailing, a Brief Chance to Relax (John Leland, Health, New York Times)
• For the Elderly, Being Heard About Life's End (Jane Gross, NY Times, 5-5-06, reprinted by Compass)
• Frequently asked questions about caregiving (caregiving.com)
• Frequently asked questions about caregiivng (Utah Coalition for Caregiver Support)
• Frequently asked questions about hospice (Caring Connections)
• FAQs about Medicare (Allsup Inc., a private Social Security disability claims services company)
• Full Circle of Care ("resources, information, and access to individualized assistance to caregivers nationwide")
• 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)

• Helpguide, a general site but with material on dementia care
• 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.
• Hiring In-Home Caregivers--What Every Caregiver Needs to Know /a> (Beverly Bernstein Joie, National Association of Geriatric Care Managers)
• Housing Options for the Older Adult (Miriam Zucker, National Association of Geriatric Care Managers)
• How can we tell if our aging parents need help? ( Carol Bradley Bursack, ElderCareLink)
• How to communicate your loved one's symptoms during a crisis (ABTA Orientation to Caregiving)
• How to Care for Your Aging Loved Ones While Still Taking Care of Yourself (San Francisco researchers Alexander Smith and Jennifer King, The Atlantic, 4-19-12)
• How to prepare for in-home care services (Shannon Dauphin, ElderCareLink). Among tips offered:
~Install anti-scald devices in showers and faucets
~Choose smoke detectors with strobe lights and vibrate features
~ Select carbon monoxide detectors with a high sensitivity rating
~ Install "grab bars" in the shower and bath
~ Consider motion sensors and other security features that alert to a lack of motion.
• 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 Blended Families, Responsibility Blurs (Paula Span, New Old Age, NY Times, 2-5-13) Who’s going to take care of you if you become sick? Talk about that while you’re still healthy.”
• In-home care can serve a variety of needs, one of many helpful articles on in-home care (ElderCareLinks)
• In-Home Care (Caring.com)
• 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
• Life Remotely: Redefining Travel While Living and Working Anywhere (Martha Retallick, Freelance Switch, 8-1-12). If you're freelance, you CAN take your laptop with you and work while caregiving. Sometimes you have nothing BUT time, so you can get a lot done. And sometimes it's hard to concentrate.
• Living with an illness (tips from Caring Connections)
• Long Distance Caregiving (Jehnell Giganti, National Association of Geriatric Care Managers)
• 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 Alliance for Caregiving (NAC, many resources, including online brochures. (In theory there is a Family Care Resource Connection but I couldn't find it.)
• National Caregivers Library, offers state-by-state links and resources, including Free Tools and Resources
• 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)
• National Institute for Aging (free publications, some available in Spanish, include: Caring for a Person with Alzheimer's Disease: Your Easy-to-Use Guide; Choosing a Doctor; End of Life: Helping with Comfort and Care; Getting Your Affairs In Order; Health and Aging Organizations (Directory); Home Safety for People with Alzheimer's Disease; Hospital Hints; Medicines: Use Them Safely; Nursing Homes: Making The Right Choice; So Far Away: Twenty Questions and Answers About Long-Distance Caregiving; There's No Place Like Home -- For Growing Old; Understanding Alzheimer's Disease (easy-to-read); Understanding Memory Loss (easy-to-read).
• Navigating The Caregiving Frontier: 6 Steps To Accepting Your New Normal (Jody Gastfriend, The Blog, Huff Post, 2-9-13)
• Next Step in Care
• Next Step in Care (guides and checklists for caregivers)
• National organizations with various specialties, one of many resources on site of Administration on Aging (part of HHS, a federal U.S. agency)

• Nonpharmacological management of agitated behavior in persons with Alzheimer’s disease and other chronic dementing illnesses
• Offering Thanks for Caregivers (Susan Gubar, Living With Cancer, NY Times Well blog, 11-21-12) These receptionists, nurses and nurse practitioners are actually caregivers, not caretakers. They come into our lives without second names, but their dedication helps innumerable cancer patients endure the unendurable.
• 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)
• Preventing Caregiver Burnout (Helpguide.org)
• 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)
• The Reluctant Caregiver (Paula Span, New Old Age, NY Times, 2-20-13)
• 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)
• Senior Care Resources (find by state, Care.com)
• Simplifying Life: The Housekeeping Matrix (Holly Whiteside, Transforming Caregiving)
• Slow Medicine and Difficult Choices (Suzanne Modigliani, NAPGCM). Recommended: My Mother, Your Mother: Embracing "Slow Medicine," the Compassionate Approach to Caring for Your Aging Loved Ones by Dennis McCullough
• So Far Away: Twenty Questions and Answers About Long-Distance Caregiving (National Institute on Aging)
• Strategies for Long-Distance Care of Aging Parents (Irene S. Levine and Betsy Rubiner, Better Homes and Gardens, April 2005)
• Suddenly, They’re All Gone (Carol Mithers, The New Old Age, NY Times, 3-22-13) "While you’re caring for the old, you can’t believe what you’re called on to do and where you find yourself, can’t believe that your time with them will ever end. Then one day, it just does." The caregiving is over, but instead of feeling relieved, I feel worse.
• Take Charge of Your Medical Information: Communication is a Two-Way Street (Kathryn Kilpatrick, ElderCareLink)
• Taking a vacation from caregiving: Part 1 and Part 2 (Carol Bradley Bursack, ElderCare Link, on coping with guilty feelings, finding substitute care, and recognizing signals of stress overload--such as skipping your own physicals, drinking or eating too much, and being short-tempered with family members)
• Taking a Zen Approach to Caregiving (Judith Graham, New Old Age, NY Times, 1-11-13, an interview with Jennifer Block, who practices “contemplative caregiving” — the application of Buddhist principles to caregiving)
• 10 Conversations to Plan for Aging with Dignity (useful PDF, Bruce Chernof, president and CEO of The SCAN Foundation)
• 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)
• Today's Caregiver magazine online
• Top five reasons to choose in-home care (Shannon Dauphin, EldercareLink). Many helpful articles on this site. Scroll down to find links to them.
• Top 10 Tips for Beginning Caregivers: Insiders’ Advice (Leigh Ann Otte, Our Parents)
• Toxic Elderly Parents and Their Caregivers (Beverly Bernstein Joie, National Association of Geriatric Care Managers)
• Traumatic brain injury
• U.S. trauma centers that treat traumatic brain injury (TBI)
• Useful medical websites
• Watching out for financial elder abuse (Cathy Jo Cress and Bunni Dybnis, National Association of Geriatric Care Managers)
• Well Spouse Association, which offers a complimentary PDF issue of its newsletter Mainstay. Well Spouse support groups offer support to spousal caregivers. Read Alix Kates Shulman's story about the importance of such a support group.
• 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 Broke My Father's Heart by Katy Butler (NY Times Magazine, 6-18-10). How putting in a pacemaker wrecked a family's life. "I watched them lose control of their lives to a set of perverse financial incentives — for cardiologists, hospitals and especially the manufacturers of advanced medical devices — skewed to promote maximum treatment. ,,,According to an analysis by the Dartmouth Atlas medical-research group, patients are far more likely than their doctors to reject aggressive treatments when fully informed of pros, cons and alternatives — information, one study suggests, that nearly half of patients say they don’t get." You may also want to read Knocking on Heaven's Door: The Path to a Better Way of Death
• What caregivers say (Caring Today, after survey of 500 caregivers
• Which Care Option Is For You: In-Home Care or Senior Housing? ( Sue Lanza, ElderCareLink).
• 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)
• Worry-Free Care for Faraway Parents: Geriatric Care Manager Helps Ease Stress and Get Better Care for Aging Parents (Phyllis Mensh Brostoff, Bottom Line Health, February 26, 2009, reprinted by Compass).

Carol Levine, Championing the Caregiver's Cause (listen to NPR program)

I Must Save My Child, by Melissa Fay Greene (Parade, 2-15-08) -- after her daughter was diagnosed with uncontrollable epilepsy, Susan Axelrod took on the cause

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BOOKS FOR AND ABOUT CAREGIVERS

Tell me which books you have found particularly useful at helping you care for someone seriously ill (or caring for yourself, when burning out from caregiving). Some of these books are free and online; click on the link and you should land where you can download them.

• And Thou Shalt Honor: The Caregiver's Companion, ed. Beth Witrogen McLeod (foreword by Rosalynn Carter)
• An Uncertain Inheritance: Writers on Caring for Family, edited by Nell Casey, contains 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."
• The Art of Being a Healing Presence by James Miller and Susan Cutshall
• Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death (by Joan Halifax with foreword by Ira Byock)
• 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
• 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
• Exploring Hell and Other Warm Places: Redemption Through Caregiving by Holly Whittelsey Whiteside, author of The Caregiver's Compass: How to Navigate with Balance & Effectiveness Using Mindful Caregiving
• Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley
• 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
• Handbook for Mortals by Joanne Lynn, and Joan Harrold (free online consumer guide to end-of-life care)
• How We Die by Sherwin Nuland (what to expect -- how the various body systems fail, when they fail -- a primer even for healthy readers)
• 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)
• Heartmates: A Guide for the Spouse and Family of the Heart Patient by Rachael Freed. Wrote one Amazon reader: "a frank discussion of the most difficult issues, including the return of trust and intimacy in the couple's relationship as well as feeling isolated and crazy because of the grief that seems to be inappropriate because the patient has recovered." See also The Heartmates Journal: A Companion for Partners of People with Serious Illness
• Keeper: One House, Three Generations, and a Journey into Alzheimer's by Andrea Gillies (reviewed in the NY Times by Paula Span).
• 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)
• May I Walk You Home?: Courage and Comfort for Caregivers of the Very Ill by Joyce Hutchison and Joyce Rupp (especially helpful for family members, friends, chaplains, or health care workers). Stories and examples showing how to simply "be there with one who is seriously ill or dying - how to listen, when to speak, how to provide encouragement, and most of all, how one's simple presence can encourage the dying person to let go and make the final step of the journey in peace."
• 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
• Orientation to Caregiving: A Handbook for Family Caregivers of Patients with Brain Tumors (free download of book by Steffanie Goodman, Michael Rabow, and Susan Folkman, a collaboration between the
UCSF Osher Center for Integrative Medicine and the UCSF Department of Neurological Surgery)
• Handbook for Mortals by Joanne Lynn, and Joan Harrold (free online consumer guide to end-of-life care, hosted by Growth House)
• Passages in Caregiving: Turning Chaos into Confidence by Gail Sheehy. (She reports on eight stages of caregiving, or "Turnings," ranging from "shock and mobilization" to "the long goodbye," and about her experience caring for her husband, Clay Felker). Listen to Diane Rehm's interview with Sheehy (and read comments by listeners).
• Share The Care: How to Organize a Group to Care for Someone Who Is Seriously Ill by Cappy Capossela, Sheila Warnock, and Sukie Miller
• Slipping Away by Luree Miller (a beautiful story, with helpful information 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 is 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), depriving him of short-term memory. A memoir 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!
• 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)

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Books about Caregiving for Elders
A number of books in the list above (about caregiving generally) are also about caring for elderly parents.
• The Bill from My Father: A Memoir by Bernard Cooper ("a brusquely tender elegy to his baffling father, Edward").
• A Bittersweet Season: Caring for Our Aging Parents--and Ourselves by Jane Gross.
• Caring for Your Parents: The Complete AARP Guide by Hugh Delehanty, Elinor Ginzler, with a foreword by Mary Pipher
• The Complete Eldercare Planner: Where to Start, Which Questions to Ask, and How to Find Help by Joy Loverde (excellent guide to available resources. Says one reader: "Trains you in positive reactions, not 'ohmygawd.'"
• Coping With Your Difficult Older Parent : A Guide for Stressed-Out Children by Grace Lebow, Barbara Kane, and Irwin Lebow
(learning what they need and how to tell them they need to adjust--friends have well-thumbed copies)
• 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
• Elder Rage, or Take My Father... Please!: How to Survive Caring for Aging Parents by Jacqueline Marcell (practical answers to problems like getting obstinate elders to accept cleaning and caregiving help, see a different doctor, give up driving, attend adult day care, eat, sleep and bathe properly, move to a new residence, etc. Highly recommended by friends with fully marked-up copies of a book that clearly helped them -- "good for dealing with personal dynamics."
• 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
• Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste
• My Mother, Your Mother: Embracing "Slow Medicine," the Compassionate Approach to Caring for Your Aging Loved Ones by Dennis McCullough
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Gather Key Documents Family Caregivers May Need
Gather information on the topics listed below and keep it in one or two places (which you tell trusted, 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 ABOUT MEDICINE AND HEALTH CARE -- FOR PATIENTS AND CAREGIVERS
To help them understand the professionals they will depend on.

• 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)

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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Click here to order Dying: A Book of Comfort

Lost and Found (a story by Julie Evans, in Pulse)

Daddy Issues (Sandra Tsing Loh, The Atlantic, March 2012). "Why caring for my aging father has me wishing he would die." The stark reality, presented with humor. She quotes Jane Gross (author of A Bittersweet Season: Caring for Our Aging Parents--and Ourselves ): "...unresolved family dynamics will probably begin to play out: 'Every study I have seen on the subject of adult children as caregivers finds the greatest source of stress, by far, to be not the ailing parent but sibling disagreements,' Gross writes. Further, experts concur, 'the daughter track is, by a wide margin, harder than the mommy track, emotionally and practically, because it has no happy ending and such an erratic and unpredictable course.' " Do read the comments, too!

Once in a while
you have to take a break
and visit yourself.
~Audrey Giorgi, quoted in The Caregiver's Compass: How to Navigate with Balance & Effectiveness Using Mindful Caregiving by Holly Whittelsey Whiteside

“I have seen in you what courage can be when there is no hope.”
~ May Sarton

"One two-year study of married women caring for parents with dementia found that siblings were not only the greatest source of help to these caregivers but also the biggest source of interpersonal stress. Friction often stems from parents giving their children different information about how they're doing. Mom may put on a good show for the out-of-towner, who then discounts what the local sibling says." ~ from Who Takes Care of Mom? by Francine Russo, author of They're Your Parents, Too!: How Siblings Can Survive Their Parents' Aging Without Driving Each Other Crazy

Grief Counseling Resource Guide: A Field Manual (NY State Office of Mental Health). This guide for bereavement workers may be helpful to others, also. See for example, Alan Wolfelt on "companioning" -- to honor the spirit, not the intellect; to be curious, not an expert; to learn from, not teach, the bereaved; to walk alongside, not lead; to "discover the gift of sacred silence," not fill "every painful moment with words"; to "listen with the heart," not analyze the head; to bear "witness to the struggles of others," not direct those struggles; to be "present to another's pain," not "taking away the pain"; to respect "disorder and confusion," not impose "order and logic" -- and yet to help them organize day-to-day tasks and get them done. At the heart of grief counseling is "validation," according to Ken Doka: "reassurance that what they are experiencing is normal." And yet there are many different ways to grieve. Reading this helpful short guide for counselors will help regular people know how to be helpful instead of unhelpful! See also Companioning vs. Treating: Beyond the Medical Model of Bereavement Caregiving by Alan D. Wolfelt

Writing about caring for her Alzheimer's-afflicted father, Sue Miller says, "[T]his is the hardest lesson... for a caregiver: you can never do enough to make a difference in the course of the disease. We always find ourselves deficient in devotion.... Did you visit once a week? you might have visited twice. Oh, you visited daily? but perhaps he would have done better if you'd kept him at home. In the end all those judgments, those self-judgments, are pointless. This disease is inexorable, cruel. It scoffs at everything."
~ Sue Miller, The Story of My Father

"Often what we define as health problems are really support problems."
~ Judith Snow, quoted in Consequential Strangers: The Power of People Who Don't Seem to Matter. . . But Really Do by Melinda Blau and Karen L. Fingerman

"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

Click here to order Dying: A Book of Comfort

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

–Chinese Proverb

The Embrace, poem by Mark Doty (poets.org)

Commentary about poems dealing with illness, death, dying, and healing (Literature, Arts, and Medicine Database)

A Litany in Time of Plague, a poem by Thomas Nashe (poets.org)

Tubes, poem by Donald Hall (poets.org)

Visits to St. Elizabeths, poem by Elizabeth Bishop (1950), poets.org

Joel Siegel's advice for cancer patients

Mastectomy, a poem by Wanda Coleman (poets.org)

DYING, SURVIVING, AND AGING WITH GRACE

Resources on illness, death and dying, loss, grief, and positive aging

Selected Works

Quick Links

Caregivers, caregiving, and preventing or minimizing caregiver burnout

Caregivers, caregiving, and preventing

or minimizing caregiver burnout