DYING, SURVIVING, OR AGING WITH GRACE


Not necessarily in that order
Resources on illness, death and dying, loss, grief, and positive aging

Selected Works

Enjoying the golden years
Autism, Asperger's syndrome, Savant Syndrome
Depression, bipolar disorder (manic-depressive illness), schizophrenia, and other forms of mental illness
Including suicide and assisted dying
Plus memorials and requiems
Plus cemeteries, coffins, headstones, memorials, etc.
(stories about specific diseases, conditions, syndromes)
Narrative medicine (or medical narrative) Memoirs of illness, crisis, disability, differentness, and survival
Assisted living, nursing homes, cohousing, or living in place (with or without caregivers)
What's wrong with American health care? Understanding the issues reform must address

Caregivers, caregiving,
long-term care and caregiver burnout

In my view, the word is "caregiving," not "caretaking."
Caretakers take care of a building or property; caregivers take care of people.

• Resources for caregivers
• Caring for caregivers (limiting caregiver burnout)
• Online caregiver support groups
• Helpful organizations
• Helpful articles and sites for caregivers
• Key documents family caregivers may need
• Books by, for, and about caregivers
Give a caregiver the gift of a book if you can't offer a gift of your time
• Caring for patients with dementia
• Books about caregiving for elders
• A reading list of books on the practice of medicine, health care, and emergency care
• For your medical reference shelf
(and right below that a list of recommended cookbooks--good food that is also good for you)



Resources for caregivers



The Caregiver Space (The Caregiver’s Survival Network), a free social network for learning about recommended resources, sharing experiences, developing personal networks, and learning ways to minimize and cope with caregiver stress.
Caregiver: helpful tips from experienced caregiver (Bob Harrison, Caregiver Space, 6-6-16) he writes about the diagnosis, insurance, clinical trials (which many people do not know about)
Caregiver Reviews (for finding unbiased information about caregiver products, blogs, websites, timesavers -- spend time looking at categories and you'll find forms of help you may be unaware of), respect between doctor and caregiver, the need for a strong support system, anticipatory grief, learning to control the cancer and not letting it control you, never making eating the source of an argument, loving the patient, learning how to get sleep, "never assume anything," and the bottom line: "Try to keep things like medication, bed baths, food, and so on, on schedule. In other words, if you set up a schedule and stick to it, you will avoid a lot of chaos, and be able to provide better care."
AlzLive (for those who care for people with dementia) -- excellent resource page. Explore the whole wonderful website.
Lotsa Helping Hands (connects friends and volunteers with caregivers who need support or help (from friends, neighbors, colleagues, family) and helps them schedule things like delivering meals, providing rides, and other tasks that can overwhelm patients and caregivers. See Caregiver Review.) A wonderful resource--truly helps you deal with caregiving, especially when you can't handle it all yourself.

The Caregiver's Legal Guide Planning for a Loved One With Chronic Illness by Christopher J. Berry, CELA. A very helpful guide which you can download for free (PDF of whole book) by visiting this page http:/​/​www.theeldercarefirm.com/​planning-for-a-loved-one and providing your email address and verifying it by clicking a verification link sent to your inbox. "Estate planning is planning for what happens if you were to pass away, and elder law is planning for what happens if you do not," says The Eldercare Firm, which published this work and is making it available to the public, free. "“If you are caring for a loved one with a chronic illness—perhaps that person has just been diagnosed with Alzheimer’s or dementia—it is important to understand that legal documents must be drafted from an elder law or elder care perspective versus an estate planning perspective." Other points made (among many): “Financial powers of attorney only cover incapacity. A trust can cover not only incapacity but also the management and distribu¬tion of assets after the loved one has passed away.” and "Medicare is not a long-term-care provider. Medicare pays for short-term rehabilitation only." And "When someone passes away, there are four ways in which assets can be transferred out of their name: through joint ownership, a beneficiary designation, a trust, or probate. What I did not mention, you may have noticed, is a will. A lot of people think a will avoids probate. Well, it does not. A will is what gives instructions to the probate court on how to administer your estate." and "You do not want the services of an attorney who helps business owners pass down their businesses and who focuses on planning for estates worth $5 million if your loved one has only $300,000 and has been diagnosed with Alzheimer’s."

'• The Caring Collaborative, a project of The Transition Network (TTN), a women's organization embracing change after 50. The Caring Collaborative produces three useful manuals, which you can download free (PDF) on the Internet:
---Guide to Creating a Caring Collaborative in Your Community
---Creating a Vertical Village in a High Rise-Building
---What You Need to Know When You Go to the Hospital.

Navigating the Local Eldercare System: A First Person Account (Ann Cochran, Bethesda Magazine, May-June 2015) Know which documents to have ready, and how to find services such as Meals on Wheels, The Senior Connection, Lotsa Helping Hands. "Medicaid is complex, but one thing is clear: It pays for skilled nursing facilities, but not for assisted living or help in the home." On page 3, online, Finding Help is a guide to care managers, elder law attorneys, long-term care insurance brokers, and other resources in Montgomery County, Maryland. Use that list for clues on key words to find similar help in other parts of the country.

Caring.com. A Bankrate company that provides information and support finding living and caregiving arrangements for seniors. They appear to get commissions but also explain differences between various options for seniors. See support groups for caregivers (for seniors in different categories from Alzheimer's to Parkinson's, from assisted living to living at home)
**** Caregiver Action Network, provides, among other resources, a helpful Caregiver Toolbox and links to resources for caregivers who live far away but are on the caregiving team
Strengthening Troubled Sibling Bonds to Deal With an Aging Parent (Abby Ellin, NY Times, 5-29-15) “The No. 1 complaint is ‘Why aren’t my siblings helping me?’” and after a mediation session: “They were each so righteous in their own decisions, but on some level they recognized that time was short and they had to move off of their positions.”
****CaregiverToolkit (A Place for Mom, Connecting Families to Senior Living). Search for resources under these headings: Caregiving 101 (an overview on senior care), Planning (checklists), Organizing (trackers, to organize your most critical information), Financing (tools to maximize your budget), Caring (worksheets to care for yourself), Joan Lunden's Tips (for visiting aging parents in holiday season). Very helpful!
Care Diary (free e-tool to help you manage appointments, track medications and get reminders, organize important documents, coordinate care among family members). See demo (YouTube), which gives you a model for setting up your own system at home. (My only hesitation: how reliable is your ability to get online?)
Eldercare Locator (U.S. Administration on Aging connecting you to services for older adults and their families)
Independent Living Assessment: Reviewing Functional Abilities (Philips Lifeline)
National Alliance for Caregiving (NAC) has helpful Links to resources.
National Patient Travel Center (provides information about all forms of charitable, long-distance medical transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network)
National Transitions of Care Coalition (help improving communications when a patient transfers from one health care center to another--believe me, this is when things often go wrong)
Philips Medication Dispensing Service makes it easy to know what medication to take at what time. (See Care Giver Review.
Veterans’ Families Seek Aid for Caregiver Role (Leslie Kaufman, NY Times, 11-11-08) Paying family caregivers "four hours is insignificant when they often spend 24 a day in the job. It also limits compensation to time spent on medical needs like bladder assistance and feeding, leaving out other tasks like chauffeuring and paperwork."
AARP's Caregiving Resource Center
Leeza's Care Connection (helpful locations online and on brick and mortar sites)
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Caring for caregivers (preventing caregiver burnout)


Respite Care (Alzheimer's & Dementia Caregiver Center) Call their 24/​7 Helpline: 800.272.3900
Respite Care, Eldercare Locator
Respite Care Program (Family Caregiver Alliance)
ABCs of Respite: A Consumer's Guide for Family Caregivers (ARCH National Respite Network). See Respite Locator.

Seeing the ‘Invisible Patient’ (Jane Gross, NY Times, 11-17-14)
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."
Area Agency on Aging (your local area agency may help seniors find van and shuttle services to help them buy food or go shopping, etc.)
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)
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)
Home Alone: Family Caregivers Providing Complex Chronic Care (AARP Public Policy Institute, 2014). (You can download the full report, free.) Family caregivers have traditionally provided help with bathing, dressing, eating, and household tasks such as shopping and managing finances. These tasks remain important to the well-being of care recipients, but the role of family caregivers has expanded to include performing medical/​nursing tasks of the kind and complexity once only provided in hospitals. A survey of 1,677 family caregivers revealed that
---Almost half (46%) of family caregivers performed medical/​nursing tasks for care recipients with multiple chronic physical and cognitive conditions
--- Three out of four (78%) family caregivers who provided medical/​nursing tasks were managing medications, including administering intravenous fluids and injections
--- Caregivers found wound care very challenging; more than a third (38%) wanted more training.
Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers (Public Policy Institute, 2011)
Caring for the Caregiver (by Sheree Crute, Compass Elder Care Specialists, reprinted from AARP)
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)
Care2Caregivers (800-424-2494), a recently created helpline for caregivers to people with dementia and Alzheimer’s disease, operated by Rutgers University Behavioral Health Care.
It Takes a Team: How to coordinate your loved one's care—and take care of yourself in the process. (Gina Shaw, Neurology Now, Aug-Sept 2014), focuses especially on the health care professionals helpful with neurological conditions.
Caregiver Burden: A Clinical Review (Ronald D. Adelman; Lyubov L. Tmanova; Diana Delgado; Sarah Dion; Mark S. Lachs, JAMA, 3-12-14)
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.
An Uncertain Inheritance: Writers on Caring for Family, ed. by Nell Casey
Caregiver Resources: 13 Tools To Help Reduce Stress This Holiday Season (Rebecca Klein, Huff/​Post50, 11-20-12)
AARP guide to online support for seniors and caregivers
The stressed, ill and alone find solace in online support groups (Tyeesha Dixon, Orlando Sentinel, 8-12-07)
Children of Aging Parents (CAPS – support groups and newsletter focus on problems such as stress among siblings, caregiver burnout, etc.)
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Caregiver online communities


CaringBridge. No more repeating the story over and over. Connect with all of your family and friends at once, giving you time to focus on what matters. Personal, protected websites where family and friends of a sick or injured person can share news about and from the patient and receive emotional and other support (for example, signing up to bring a specific meal on a specific day). News of an illness shared only with family and friends, not broadcast to the world.
CareGiving.com
Caring Road support network
Inspire (Health and wellness support groups)
The Caregiver Space (a Facebook group)
Cancer Caregiver Support Group (a Facebook group)
Alzheimer's and Dementia Caregiver Support Groups

Other helpful organizations

Some of these will provide information and resources on family caregiving, some on managing professional or residential caregiving, some on resources specific to certain conditions, situation, or diseases. Ask friends who want to help to go through these lists and find resources and information helpful for your situation.

Agencies and organizations (Caregiver Action Network's excellent links in many categories)
Alliance for Health Reform
Alzheimer’s Association
American Association for Long-Term Care Insurance
American Cancer Society . How to care for someone with cancer; when your child has cancer; and other topics. Including Find Support Programs and Services in Your Area and Road to Recovery (volunteers provide transportation to and from cancer treatment)
Americans for Better Care of the Dying (useful links)
Association of Health Care Journalists (AHCJ) resource links (for health care journalists but parts are accessible by consumers)
California Partnership for Long-Term Care
CancerCare provides free, professional support services for caregivers and loved ones, as well as caregiving information and additional resources (including online support groups, telephone groups and face-to-face groups)
Care.com (find local babysitters, nannies, child care and senior home caregivers near you. Post jobs for babysitting, tutoring, home health care, pet care etc.). Talk for free to a care.com senior care advisor.
Caregiver Action Network (education, peer support, and resources for caregivers--including connecting you with volunteers who can help educate you about caregiving). See also tips and how-to guides, among other resource.
Caregiving Resource Center (AARP)
Caring.com. See resources and information about companion care, senior care, in-home care, caregiver wellness, and support groups for caregivers for various groups (such as Alzheimer's and dementia care, Parkinson's, cancer, diabetes -- it's a long list, with many helpful links).
Caring from a Distance (CFAD)
Commonwealth Fund State Scorecard on Long Term Services and Support
Elder Care Locator
Family Caregiver Alliance (education, advocacy, and connections for loved ones with chronic, disabling health conditions)
Government resources (NORD). Excellent links to strong government sources of help, for everything from information about drugs to clinical trials, National Institutes of Health (NIH) to National Library of Medicine, and so on.
Medicare's site on long-term care
National Academy of Elder Law Attorneys (NAELA)
MedlinePlus (trusted information from the U.S. National Library of Medicine, on NIH campus). See interactive and self-playing health tutorials on specific diseases and conditions and on specific tests and diagnostic procedures.
National Alliance for Caregiving
National Association of Professional Geriatric Care Managers (NAPGCM)
National Caregiver’s Association
National Care Planning Council Guide to Long-Term Care Planning
National Clearinghouse for Long Term Care Information
National Family Caregivers Association
National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases. Among other things, access reports from the rare disease database. See very helpful links to other resources and tools, including financial medication assistance resources, resources for people with disabilities and special needs
National Partnership for Women & Families . See resources on Family & Medical Leave Act
Neurology Now has a list of organizations to turn to for various "brain diseases," including Alzheimer's disease, ataxia, autism, brain tumor, cerebral palso, Chiari malformation and Syringomyelia, depression and mental disorders, dysautonomia, dysphonia, dystonia, epilepsy and seizures, headache, migraines, Huntington's disease, hydrocephalus, infectious disease (encephalitis, meningitis), multiple sclerosis, myasthenia gravis, neuromuscular diseases (ALS, Kennedy's disease, Moebius syndrome, and others), Parkinson's disease and movement disorders, rare diseases, stroke, Tourette's syndrome, transverse myelitis, trauma, trigeminal neuralgia).
RareCaregivers.org (Caring for Rare Disease Caregivers, part of Caregiver Action Network)
Strength for Caring.
Support Groups and other resources (by state, Caregiver.com)
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Helpful articles and sites for caregivers


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
Caregiver.com
Daddy Issues: Why caring for my aging father has me wishing he would die. (Sandra Tsing Loh, The Atlantic, March 2012). Ready for a big dose of reality? Sandra TL give it to us through black humor and cold facts, starring her elderly father: "Back in his 70s, to prepare for his sunset years, this Chinese widower had taken the precaution of procuring (after some stunning misfires) his retirement plan: an obedient Chinese-immigrant wife, almost 20 years younger than himself, who, in exchange for citizenship, would—unlike American women—accept the distinctly nonfeminist role of cutting up his fruit and massaging his bunions." No sugar-coating here. Very funny, but also eye opening.
A Caretaker's Conflict: When Love and Resentment Collide (John Donvan interviews Sandra Tsing Loh, NPR, 2-29-12). Listen and/​or read the transcript.
Navigating the Local Eldercare System: A First Person Account (Ann Cochran, Bethesda Magazine, May-June 2015) Know which documents to have ready, and how to find services such as Meals on Wheels, The Senior Connection, Lotsa Helping Hands. "Medicaid is complex, but one thing is clear: It pays for skilled nursing facilities, but not for assisted living or help in the home." On page 3, online, Finding Help is a guide to care managers, elder law attorneys, long-term care insurance brokers, and other resources in Montgomery County, Maryland. Use that list for clues on key words to find similar help in other parts of the country.
Caregiving Resources (CDC -- Center for Disease Control and Prevention)
Caregiver Resources (Medicare.gov) For example, What types of assistance does Medicare cover?
Caregivers' Resources (USA.gov) Find a nursing home, assisted living, or hospice; check your eligibility for benefits; get resources for long-distance caregiving; review legal issues; and find support for caregivers.
Adult Day Care Directory (Caring.com)
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, have Alzheimer's, etc)
AgeWise Living (helping families resolve eldercare issues by choice, not crisis)
Aging and Abuse (WAMU radio programs on various topics). Listen online to:
~Elderly Couple's Tale Of Abuse Not So Uncommon (Rebecca Blatt, 5-3-13)
~Tackling Nursing Home Complaints With Ombudsman Programs (Michael Pope, WAMU, 5-7-13)
~Financial Exploitation Of Elderly Difficult To Detect (Matt Bush, 5-8-13)
~House Calls Can Be A Better Option For Some Seniors (Rebecca Blatt, 5-10-13)
How to Help Your Aging Parents Without Going Broke (Kate Ashford, Good Housekeeping ) From making their daily life easier to affording in-home care, here's a (money) wise guide.
Aging, end-of-life, and caregiver resources (Nancy Yanes-Hoffman)
Aging parents: 7 warning signs of health problems (Mayo Clinic staff). Concerned about your aging parents' health? Use this guide to gauge how your aging parents are doing — and what to do if they need help.
Aging parents: During emergency, details count (Mayo Clinic staff).
Caregiver page, American Heart Association
Could a Caregiver Corps Solve the Caregiving Shortage? (Hilary Young, HuffPost, 9-9-14)
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 by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here (61.9KB)
Benjamin Rose Institute on Aging
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.
A Blessing For One Who Is Exhausted (John O'Donohue's lovely poem, on Awakin site (about deepening our self-awareness, in a community of kindred spirits)
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)
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)
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 Elderly Parents. A geriatric care manager can help long-distance caregivers (Lisa C. Deluca, Caregiver Support, 7-21-08)
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 (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)
Early warning signs that Mom or Dad may need help (National Association of Geriatric Care Managers)
Easing the burden of long-term medical demands for family caregivers (Kathleen McCleery, US Public Broadcasting Service _Newshour_, Apr. 8, 2014) Video, audio (8 minutes 5 seconds) and transcripts.
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 sheets on caregiver issues and strategies
Family Caregiver Agreements: When a family member is “paid” to be a personal caregiver (Linda Fodrini-Johnson, National Assoc. of Geriatric Care Managers)
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 a Home Aide Can Be a Challenge
Finding help for caregivers (Eileen Beal)
Find the Right Care for Your Loved One (AARP 2-13-12). Quick overview of home health, assisted living facilities, nursing homes, hospice, and adult day care.
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)
For Some Caregivers, the Trauma Lingers (Judith Graham, The New Old Age, NY Times, 1-30-13). Some caregivers struggle with intrusive thoughts and memories months and even years after a loved one has died. Caregiving on its own may not cause post-traumatic stress disorder, but for a caregiver who has experienced trauma earlier in life "this kind of response might be activated." Graham goes on to write For Traumatized Caregivers, Therapy Helps(2-22-13)
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)

Hiring In-Home Caregivers--What Every Caregiver Needs to Know (Beverly Bernstein Joie, National Association of Geriatric Care Managers)
Home Alone: Family Caregivers Providing Complex Chronic Care (Susan C. Reinhard, Carole Levine, and Sarah Samis, AARP's Public Policy Institute, Oct. 2012) "In a fragmented health care system, it is often difficult to pinpoint individual or institutional responsibility for action. As a result, people with chronic conditions and their family caregivers too often move from the care of one professional to another or from one care setting to another without a clear sense of who is in charge. All too often, no one is in charge. Expecting family caregivers to perform the medical/​nursing tasks described in this report without substantial professional involvement is unrealistic and unacceptable." See 10 recommendations for action.
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 health insurance works (TurboTax) (thanks for link, Teresa Robertson)
How to communicate your loved one's symptoms during a crisis (ABTA Orientation to Caregiving)
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.
How to Say It to Seniors: Closing the Communication Gap with Our Elders by David Solie
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.
I Must Save My Child: The Axelrods, Lauren, and Epilepsy (Melissa Fay Greene, Parade, Feb. 2009) To learn more, see Cure Epilepsy
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)
Is Home Always So Sweet? (Paula Span, NY Times, 6-4-09) "To move or not to move: it’s a daunting decision that may pit an older person’s preference against his safety and health. It’s not always clear which should prevail, where quality of life really lies." Assisted living may be better than living at home in some situations.
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
(Not So) Golden Years (Madge Kaplan, Pulse, 3-7-14). The problems of caring for elderly parents at a distance.
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)
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)
Relaxation exercises, online (requires Quicktime or RealPlayer software to listen)
The Reluctant Caregiver (Paula Span, New Old Age, NY Times, 2-20-13). "Elder care can be a wonderful experience, satisfying and meaningful, but guilt and resentment are also standard parts of the job description, at least occasionally. For a reluctant caregiver, 'the satisfaction is, you haven’t turned your back... You can take pride in that.' "
Ruth and Erica (a 13-episode well-acted televised drama showing conflict between mother and daughter as family struggles to come to terms with the parents' declining ability--you can watch one episode at a time).
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 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 Don't Tell Anyone (Sally Abrahms, AARP, 11-20-12).
What caregivers say (Caring Today, after survey of 500 caregivers)
When They Won’t Spend the Money (Paula Span, New Old Age blog, NY Times, 8-4-11) Some seniors can afford to pay for what they need, but won’t. What’s this about?
Which Care Option Is For You: In-Home Care or Senior Housing? ( Sue Lanza, ElderCareLink).
Will your brothers and sisters help care for your parents? (Elizabeth O'Brien, MarketWatch, 11-5-14)
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
Who takes care of whom? Surprising new evidence (EurekAlert 6-29-15) New study from Population and Development Review finds rising need, reassurances
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).


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Books by, for, and about caregivers
(about caregiving for elders and patients with dementia)



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. For books purchased through Amazon.com, this site gets a small commission, which helps support the work of sustaining the site.

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 Bittersweet Season: Caring for Our Aging Parents--and Ourselves. Jane Gross, New York Times blogger about elder care (The New Old Age), "shares her frustrating, heartbreaking, enlightening, and ultimately redemptive journey, providing us along the way with valuable information that she wishes she had known earlier. We learn why finding a general practitioner with a specialty in geriatrics should be your first move when relocating a parent; how to deal with Medicaid and Medicare; how to understand and provide for your own needs as a caretaker; and much more." "In the space of three years … my mother’s ferocious independence gave way to utter reliance on her two adult children. Garden-variety aches and pains became major health problems; halfhearted attention no longer sufficed, and managing her needs from afar became impossible … We were flattened by the enormous demands on our time, energy, and bank accounts; the disruption to our professional and personal lives; the fear that our time in this parallel universe would never end and the guilt for wishing that it would … We knew nothing about Medicaid spend-downs, in-hospital versus out-of-hospital “do not resuscitate” orders, Hoyer lifts, motorized wheelchairs, or assistive devices for people who can neither speak nor type. We knew nothing about “pre-need consultants,” who handle advance payment for the funerals of people who aren’t dead yet, or “feeders,” whose job it is to spoon pureed food into the mouths of men and women who can no longer hold a utensil."
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)
Bettyville: A Memoir by George Hodgman. "A witty, tender memoir of a son’s journey home to care for his irascible mother...an indelible portrait of a family and an exquisitely told tale of a prodigal son’s return."
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
Can't We Talk about Something More Pleasant?: A Memoir by Roz Chast. A graphic memoir, telling the story of her aging parents' last years through four-color cartoons, family photos, and documents, and a narrative evoking both tears and laughter. See Times review by Alex Witchel: "This is a beautiful book, deeply felt, both scorchingly honest about what it feels like to love and care for a mother who has never loved you back, at least never the way you had wanted, and achingly wistful about a gentle father who could never break free of his domineering wife and ride to his daughter’s rescue. It veers between being laugh-out-loud funny and so devastating I had to take periodic timeouts." Recommended reading for medical trainees, healthcare workers and administrators, and adult children!
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
The Complete Eldercare Planner: Where to Start, Which Questions to Ask, and How to Find Help, revised ed., by Joy Loverde. Considered a "must read" if you need help coping with practical and emotional issues, such as helping elders find the right place to live and face (emotionally) needing to leave there.
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)
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. "Whoever said love is stronger than death was full of malarkey," comments Cooney, setting the forthright tone early in this honest account of taking care of a parent with Alzheimer's.
Eldercare for Dummies by Dr. Rachelle Zukerman
The Eldercare Handbook: Difficult Choices, Compassionate Solutions by Stella Henry and Ann Convery. "Henry helps readers navigate the daunting logistics and powerful emotions of making care decisions for an elderly parent or loved one. Drawing from her 36 years as a registered nurse and a nursing home administrator, as well as her experience caring for both her parents (both of whom suffered the ravages of Alzheimer's disease), Henry tackles all the tough issues: spotting the warning signs of dementia, redefining sibling roles, doing a walk-through at an assisted living facility or nursing home, making the move, and coping with 'take me home!' demands. She also explains the medical, legal, and insurance maze."
Eldercare 911: The Caregiver's Complete Handbook for Making Decisions by Susan Beerman, Judith Rappaport-Musson
Elder Care: What to Look For, What to Look Out For! (3rd edition) by Thomas M. Cassidy). Addresses such topics as fraud, maltreatment, long-term care insurance, assisted-living facilities, nursing homes, hospice--and includes useful checklists.
The Elder Law Handbook: A Legal and Financial Survival Guide for Caregivers and Seniors
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."
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
The End of Your Life Book Club by Will Schwalbe. A son from a book-loving famly (plus, he works in book publishing) helps his once-highly-active mother, dying from pancreative cancer, through that difficult time by reading the same books and talking about them.
The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own by Gary Barg
The Fifth Season: A Daughter-in-Law's Memoir of Caregiving by Lisa Ohlen Harris. Caring for her mother-in-law for seven years, Harris became close to her and helped Jeanne file an advance directive specifying that no extraordinary measures were to be taken to preserve life. As they navigated the healthcare system in Jeanne’s final months, Harris and her mother-in-law realized that "an advance directive is not as clear and controlled as it seems. End of life issues involve a series of small decisions—sneaky ones, with no big drama—and life support is already established before any one big decision is made."
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley (a practical handbook)
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
Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn
Handbook for Mortals by Joanne Lynn, and Joan Harrold (free online consumer guide to end-of-life care, hosted by Growth House)
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
How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard. "An immensely wise book. Health psychology has been poisoned by the view that the best way to approach illness is through a muscular, militant resistance. This books shows otherwise."--Larry Dossey, author of Healing Words
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
Jan's Story: Love Lost to the Long Goodbye of Alzheimer's by Barry Peterson. 25 years into their marriage, Alzheimer's claimed his wife.
Keeper: One House, Three Generations, and a Journey into Alzheimer's by Andrea Gillies (reviewed in the NY Times by Paula Span).
Lucky That Way: Rediscovering My Father's World by Pamela Gerhardt. Glowing readers' comments. " A must read for anyone dealing with the chaos, particularly when siblings live far away, that often comes from helping an aging parent navigate illness and decline....Pam gives you permission to laugh when all you know to do is cry!" "..."a beautiful tribute to the complicated relationships we all have with our (somewhat dysfunctional) families"..."emotional honesty and wonderment."
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)
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
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)
Talking to Ourselves, a novel by Andrés Neuman. The story (in three voices) of a mother, a dying father, and their 10-year-old son. This story about complicated and terminal illness focuses on the caregiver and how family members lie to each other, or are silent, about illness. Hear or read discussion on Diane Rehm show (Susan Page hosting).
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)
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)
The Unheard Voice of the Aging Parent: Conflicts and Ambivalence in Intergenerational Relationships by counselor Carol Teplin and clinical psychologist Barbara Kaplan.
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
Changing the Way We Die: Compassionate End of Life Care and The Hospice Movement by Fran Smith and Sheila Himmel. Speaking on an NPR program recently, Smith said the commercial firms that operate hospice operations tend to "cherry-pick" the most profitable customers (long-term dementia patients).
*****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
Mother Daughter Me: A Memoir by Katie Hafner. (Here's a New York Times piece about the author's experience caring for her teenage daughter and her 77-year-old mother‘Mother Daughter Me’: The Best Memoir I’ve Read This Year by KJ Dell'Antonia (1-18-13)
My Mother, Your Mother: Embracing "Slow Medicine," the Compassionate Approach to Caring for Your Aging Loved Ones by Dennis McCullough
When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions by Paula Span (New Old Age columnist for the Times)
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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), as you may need it in a hurry:
• 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
Documents you need to protect your own and your survivors' rights and wishes
Document and information you should have available in an easy-to-find place
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Caring for patients with dementia


Alzheimer’s Association
Age of Uncertainty (Roanoke, VA, blog with video stories about those who are aging, vulnerable, have Alzheimer's, etc)
Alzheimer's Association Do you know the names of your parents' doctors? Their health insurance policy numbers? Take time now to gather these and other essential details about your parents' health.
About New York; Lost and Confused in the Backyard, Central Park (Dan Barry, NY Times, 4-5-06). Tom and Sandra McCormack, a love story.
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
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)
Arts allow Alzheimer's patients to live in the moment (Mary Brophy Marcus,USA Today)
Best books on Alzheimers (Paula Farris, Dementia Caregiving 101)
Caregiver.com (with special attention to Alzheimer's, bipolar disorder, schizophrenia. long-term care, and medication management)
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)
Fact sheet on dementia (Family Caregiver Alliance)
A Good Enough Daughter (Sara Myers' blog about taking care of her mother, whose increasing dementia is one concern)
Life Lessons From Dad: Caring for an Elderly Parent (Dave Shiflett, Wall Street Journal, 6-27-14). "..one of the most important lessons we learned from this experience: Never take friends for granted. Among our most cherished memories are of friends who stood with us, whether by bringing over a meal, letting us use a second home to get away for a few days or simply asking how things were going."
In Alzheimer’s Cases, Financial Ruin and Abuse Are Always Lurking (Paul Sullivan, NY Times, 1-30-15) Abuse of elders with Alzheimer's almost always involves coercion and control. "Red flags include an elderly relative suddenly spending time with a new, younger friend — or an adult child or distant relative moving in. Putting good checks in place is not hard but it requires foresight: regular visits by someone who is trusted to monitor someone’s appearance, automated deposits and bill payments, and conversations with bank tellers or doormen who know the elderly person’s patterns."
Study Finds Wives Often Struggle With Stepchildren Over Caregiving (Jan Hoffman, NY Times, Health, 10-15-13).
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.
Top Mistakes We Make With Dementia Patients (Steve Slon, Be Close, interview with Teepa Snow). Part 2 of the interview: How Dementia Affects the Five Senses. (That's why she keeps telling you you're not following her recipe right! She's lost some of her ability to taste.)



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

Caregiving in the Age of Long Decline (Nell Lake, Guernica, 1-15-14). Ours is an age of long decline and slow loss. Her mother’s final death, then, came both hard and as a relief. From Lake's book The Caregivers: A Support Group's Stories of Slow Loss, Courage, and Love

“Be nice to the folks you pass on the way up because you’re likely to see them on the way down.”

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

Never Let Go (three-part series, by Kelley Benham, Tampa Bay Times, 12-9-12). Micro preemie parents decide: Fight or let go of their extremely premature baby? Part 1 Lost and Found . When a baby is born at the edge of viability, which is the greater act of love: to save her, or to say goodbye? Part 2, The Zero Zone In a neverland of sick babies, the NICU is a place where there is no future or past. Every moment is a fight for existence.; and Part 3, Calculating the Value of a Life.

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

"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




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