Caregivers, caregiving,
long-term care and caregiver burnout
The word is "caregiving," not "caretaking." Caretakers take care of a building or property; caregivers take care of people.
• Resources for caregivers
• Some of our favorite ways to help patients, caregivers, and their families
• Caring for caregivers (limiting caregiver burnout)
• Online caregiver support groups
• Caring from afar
• Hiring a geriatric care manager
• 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
• How to Be a Caregiver: Six Things to Know (Tara Parker-Pope, New York Times)
• Does America Care About Care? Not Enough (Courtney E. Martin, NY Times, 9-4-19) No paid family leave? Why not? Some 41 countries across the globe guarantee their workers paid family leave to tend to children or elders. The United States doesn’t. That may be changing.
---Child Support vs. Deadbeat States (Courtney E. Martin, NY Times, 9-10-19) When states take over managing child support, watch out. Most of the money paid in by parents often disappears into state coffers. It doesn’t have to be that way.
---A New Wave of Caregivers: Men (Courtney E. Martin, NY Times, 9-18-19) The shortage of caregivers around the country has opened a constructive path for men seeking work, including some who have served time in prison.
• Caregiving at an Early Age (Vera Rulon, Pfizer, GetHealthy, StayHealthy, 11-26-14) Young caregivers (children and young adults) may not be getting the support they need, mostly because people may not know that they are taking care of someone. These young people need to know that it is OK to let the adults in their school or community know that they are a caregiver. These organizations provide support to young caregivers:
---American Association of Caregiving Youth (Caregiving Youth Project)
---Young Adults Caring for a Parent With Cancer (Cancer.net)
---Checklist for Times When You Need Respite Care (Aging Care) H/T Anna Webber
• Caring from a Distance (provides information on financial management, institutional options, diseases/conditions and treatments, insurance, and end-of-life care)
• The Mindful Caregiver (Nancy Kriseman, Atlanta Jewish Times, 5-27-14) Planning ahead prevents rash, costly decision-making errors.
• Caregiver Resources The NIH Clinical Center's great long list--resources across the country.
• What to Know About Home Care Services (Reed Abelson, KFF Health News and NY Times, 12-4-23) What kind of home care do you need? How do you find help? Should you use an agency?
• Find the Right Home Health Aide for Your Loved One (Barbara Sadick, AARP, 10-21-21) What they do, what to look for and how to hire help for your loved one at home.
• Caregivers tackling complex medical tasks with little training (Liz Seegert reporting in Covering Health, Association of Health Care Journalists, 7-10-19) "Half of the nation’s 40 million family caregivers are performing complicated medical/nursing tasks for their family members and friends, including giving injections, preparing special diets, managing tube feedings, and handling medical equipment, according to a recent report from AARP. Additionally, 70% of these caregivers are dealing with the stress of managing pain relief amid a national opioid crisis." So reports AARP in Home Alone Revisited:Family Caregivers Providing Complex Care. Building on the original Home Alone study, this one takes a deeper dive into the daily medical tasks family caregivers must perform — often with little to no training.
• Drumbeat Builds for a Peace Corps of Caregivers (Judith Graham, KHN, 10-10-19) The Administration for Community Living, part of the Department of Health and Human Services, is taking steps to establish a National Volunteer Care Corps. If it’s successful, healthy retirees and young adults would take seniors to doctor appointments, shop for groceries, shovel snowy sidewalks, make a bed or mop the floor, or simply visit a few times a week. Younger volunteers might get class credit at a community college or small stipends. Older volunteers could enjoy a satisfying sense of purpose.
• Getting Paid as a Family Caregiver Through Medicaid (MedicaidPlanningAssistance.org) Programs are available that allow Medicaid recipients to hire family members as caregivers.
• Programs that Pay Children to Care for their Aging Parents (Paying for Senior Care) Are you eligible?
• Getting Paid as a Family Caregiver: 3 Government Benefits Programs (Daily Caring)
• Patients Turn to GoFundMe When Money and Hope Run Out (Mark Zdechlik, Minnesota Public Radio and KHN, 1-16-19) Tammy Fox wanted to help after a friend took ill with a rare and difficult-to-diagnose autoimmune disorder that required many trips to the Mayo Clinic. Although Fox couldn’t do anything medically, she knew there was a way to ease some of the burden of medical bills and costs associated with doctor visits. She turned to the website GoFundMe and set up a site for her friend.“You’ve got meals; you’ve got hotel stays,” she said. “And gas. So that all needed to be covered.”
• Here If You Need Me: Learning to Be Present While Fighting for Your Father (Beth Kephart, Catapult, 1-10-19) When fighting on behalf of the father you love, who do you become?
• For Millennials Making Their Way, a Detour: To Caregiving (Susan B. Garland, NY Times, 11-27-19) Here is a concern that baby boomers might not have thought of: Their children could be taking care of them while still in their 20s or 30s.
• At 75, Taking Care of Mom, 99: ‘We Did Not Think She Would Live This Long’ (Susan B. Garland, NYTimes, 6-27-19) Ms. Faye and her mother are part of what many experts say is a growing phenomenon: Children in their 60s and 70s who are spending their retirement years caring for parents who are in their 90s and beyond.
• Pressed Into Caregiving Sooner Than Expected (Paula Span, The New Old Age, NY Times, 3-10-17) Elder care was a responsibility Ms. Rinehart expected to shoulder, eventually. But she didn’t foresee having to leave her home for extended periods and to give up her job when she was just 46.
• A New Wave of Caregivers: Men (Courtney E. Martin, NY Times, 9-18-19) The shortage of caregivers around the country has opened a constructive path for men seeking work, including some who have served time in prison.
• Long-Term Caregiving: The True Costs of Caring for Aging Adults (The Associated Press-NORC Center for Public Affairs Research, 2018) Five things you should know: Among adults age 18 and older with experience providing long-term care:
---"Eight in 10 pay for costs associated with caregiving out of their own pockets, and 13 percent spend upwards of $500 a month on these expenses.
--- One-quarter have reduced how much they save for their own retirement as a result of caregiving expenses.
--- One-quarter say that caregiving makes it harder to manage their own health.
--- Only 54 percent have a plan in place for who would provide care in the event they were no longer able to do it themselves.
--- Sixty-three percent cope with difficult caregiving situations by praying or meditating, but 44 percent sleep less and 17 percent drink more alcohol."
• Holding the Net: Caring for My Mother on the Tightrope of Aging by Melanie P. Merriman. A memoir about caring for an aging parent. As one reader wrote, "One keeps coming back to a fundamental question: is each decision improving the quality of Mom’s life or prolonging her death? This is such an important question, and inherently without an answer at the time you are asking it.... I read the book thinking about what I might do to avoid the downward spiral of dependence and expensive but futile care. This is a useful book to stimulate important questions and conversations, and hopefully to prevent unnecessary suffering at the end of life."
• GoFundMe CEO: ‘Gigantic Gaps’ in Health System Showing Up in Crowdfunding (Rachel Bluth, KHN, 1-16-19) Scrolling through the GoFundMe website reveals seemingly an endless number of people who need help or community support. A common theme: the cost of health care. It didn’t start out this way. Back in 2010, when the crowdfunding website began, it suggested fundraisers for “ideas and dreams,” “wedding donations and honeymoon registry” or “special occasions.” A spokeswoman said the bulk of collection efforts from the first year were “related to charities and foundations.” A category for medical needs existed, but it was farther down the list. In the nine years since, campaigns to pay for health care have reaped the most cash. Of the $5 billion the company says it has raised, about a third has been for medical expenses from more than 250,000 medical campaigns conducted annually....The prominence of the medical category is the symptom of a broken system, according to CEO Rob Solomon...He said he never realized how hard it was for some people to pay their bills: “I needed to understand the gigantic gaps in the system.”
• AARP resources for caregivers
• Caregiving Basics: Things to Prepare When Taking Care of Seniors (Gloves)
• Elder Care: Resources for Seniors and Family Providers (National Association of Nursing Home Attorneys, or NANHA) Excellent section of links to practical information, such as Benefits Checkup (Benefitscheckup.org, National Council on Aging), the nation’s most comprehensive web-based service where you can search benefits and programs for seniors with limited income and resources from all 50 states and the District of Columbia.
• What Care Options Are Available for Aging People on a Budget? (Ruben Castaneda, USA Today, 10-31-17) An informal network of caregivers and adult day care may offer cost-effective options.
• Home Care Services for Seniors (HelpGuide) Want to age in place? Learn about home care services that can help you maintain your independence and stay at home for longer.
• Caregiving (Next Avenue has many articles on caregiving)
• Caregiver Connect (Family Caregiver Alliance)
• Family Care Navigator State-by-state help for family caregivers -- helps family caregivers locate public, nonprofit, and private programs and services nearest their loved one—living at home or in a residential facility. Resources include government health and disability programs, legal resources, disease-specific organizations and more. Caregiving is challenging, but there are resources to help.
• Consumer Resources (Aging Life Care Association)
• Medical Alert Devices to the Rescue (Loren Stein, AARP, 11-11-10)
• What to look for in a medical alert system (Consumer Reports, July 2015) Compares several devices, and CR does not boost ratings based on how devices are ranked.)
• Best Medical Alert Systems (Best Company, 2017) These get a commission, which affects their rankings.
• Caring For A Loved One At Home Can Have A Steep Learning Curve (Taunya English, Shots, NPR, 12-12-16) About 44 million Americans are unpaid family caregivers like Bobo — sometimes for a child with special needs, more often for a frail older adult, according to a 2015 estimate from the National Alliance for Caregiving. Many people don't have the necessary skills. Thirty-three states have adopted legislation requiring medical centers to give caregivers basic training or instructions when a patient heads home from the hospital, though how this is carried out is largely up to the hospital. "What we needed was for someone to sit me down in a class and say, 'Here's how you change the sheets while she's still in the bed. Here's how you take her blood pressure. Here's how you monitor her breathing,' " says caregiver Ken Everhart.
• Getting home from the hospital, and staying there (The Pulse, Newsworks, 2-19-15) The transitional care model is the brainchild of Mary Naylor, a professor of nursing at Penn's School of Nursing. She started the program five years ago, and believe it or not, she says it represents a huge shift in health care culture. The idea is to meet patients when they're first hospitalized, establish a relationship and understanding of their discharge plan, and then follow up with them at home within 24 hours of discharge. The nurses then regularly follow up—often in person—for anywhere from three to nine months, depending on the patient's insurer. They only serve seniors enrolled in one of two Medicare Advantage plans, because that's who reimburses them for care. More institutions are adopting the transitional care approach in some way, and overall, readmission rates are starting to go down.
• 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)
• Caring Across Generations. To understand the importance of that organization, read How Can We Better Deal With the Caregiving Needs of Aging Parents? Ai-jen Poo Wants to Help (S.E. Smith interviews Ai-jen Poo, xoJane, 6-3-14) Historically, caregiving has been one of the most undervalued professions in society despite being one of the most important, and labor organizer Ai-jen Poo is setting out to change that. She's speaking up and working in solidarity with domestic workers, including caregivers, housekeepers, and so many more, illuminating an aspect of the economy that's often swept under the rug. She's fighting for better pay, better working conditions, and respect, and her new project, Caring Across Generations, aims to reshape the way we conceptualize caregiving in America." She says, "Our vision for the care economy is actually being able to make all of that work that is so important to our families visible, and to value it within our society, such that we can create a more sustainable system....The paid workforce has tended to be low-income women who usually work full-time, sometimes more than full-time, and are still living in poverty. Many are African-American or immigrant women workers. The workforce has been devalued not only because of the work they do, but because of their social status. I would love for these jobs to be living wage jobs with benefits, sick days, and paid holidays."
Be nice to the folks you pass on the way up because you’re likely to see them on the way down.
Caregiving from afar
• 7 ways to care for elderly parents who live far away (Liz Seegert, Fortune Well, 6-4-23) Details on building a care team, hiring an aging life care manager, using employer or insurer sponsored help, considering a home care aide or personal care assistant, trying an adult day center, tapping volunteers, or going high tech.
• Long-Distance Caregiving: 5 Key Steps to Providing Care From Afar (AARP, 5-15-2020) Steady communication and building a trusted team are crucial.
• Getting Started with Long-Distance Caregiving (National Institute on Aging)
• Long-Distance Caregiving Many useful articles from the National Institute on Aging.
• Before You Hire: Interview Questions for In-Home Caregivers (Claire Wentz, Caring from Afar)
• 10 Sanity-Saving Long Distance Caregiving Tips (Sarah Henry, Caring.com)
• 4 Technology Solutions Long-Distance Caregivers Are Talking About (Claire Wentz, Caring from Afar) See also How Apps & Services Can Provide Effective, Long-Distance Care of a Senior (same site)
• Long Distance Caregiving (Vera Rulon, Get Healthy, Stay Healthy, 1-28-16)
• Organize Your Loved One’s Financial Records (AARP, 5-4-18)
• Long-Distance Caregiving for Elders (NOLO)
Hiring a geriatric care manager
• Hiring A Geriatric Care Manager (Anita Kamiel, HuffPost, 2-9-16) "GCMs are usually social workers, but they could be nurses or psychologists or someone in a geriatric health related field, that specialize in the care and problems associated with the elderly. They are certified through an independent agency to manage all aspects of the aging adult. They are totally familiar with Medicare, Medicaid, hospitals, rehab centers and home care through both private pay and long term care insurance. GCMs can provide the all important continuity of care when there are multiple professionals to manage and/or when transitions need to be made."
• How to find a geriatric care manager (Theo Thimou, Clark.com, 6-9-17)
• Why Hire a Geriatric Care Manager? (Jane Gross, NY Times, 10-6-08) What geriatric care managers do, how they are trained and certified, how much they cost, and how consumers can make wise decisions if they decide to hire one. What to ask when hiring one.
• What Is a Geriatric Care Manager? (National Institute on Aging) What do they do? How can you find one?
• What reporters should know about geriatric care managers (Melissa Patrick, Covering Health, AHCJ, 3-2020)
• Caring for a Parent From Far Away (Mary Kane, Kiplinger's, Nov 2017) Caregiving for an elderly parent or relative is especially hard for the nation's seven million long-distance caregivers.
• Consumer Resources (Aging Life Care Association)
• Aging Life Care Association 1-520-881-8008 (formerly, the National Association of Professional Geriatric Care Managers)
• National Academy of Certified Care Managers
• Eldercare Locator 1-800-677-1116 (toll-free)
Caring for caregivers (preventing caregiver burnout)
"You can't pour from an empty cup. Take care of yourself first."
• When the Caregivers Need Healing (Catherine Saint Louis, NY Times, 7-29-14) Nicholas Pinter's autism and bipolar disorder pose challenges for his parents. His father, Mike, right, learned mindfulness methods to help reduce his stress. Instead of "sharpening their parenting skills," parents 'learned ways to tackle their distress as problems arise. The idea is to stop wasting energy resisting the way life is....During the sessions Mrs. Shouse led, she tried to help other mothers understand it's O.K. to "enjoy their kids as kids" and to not make "all moments edifying."'
• The Personal Sacrifices Family Caregivers Make for Their Loved Ones (Edie Grossfield, Next Avenue, 11-8-18) A recent survey shows many give up health care, money and social time. "Caregivers are very invested in providing care to their loved ones, but they have a lot of needs themselves. Which begs the question--who’s providing support for the caregivers?"
• Intimate Lessons from the Front Lines of Family Caregiving (Facebook Live, Kaiser Health News, 11-20-19) 1.5-hour video of a panel discussion among caregiving experts, addressing such questions as: What emotional and practical challenges do family caregivers face as they undertake these responsibilities? How do they cope with changing relationships, financial burdens and the distress that serious illness often provokes? How do they balance their own needs with the needs of the person they’re caring for? Where do they find support?
• How Bogotá cares for its family caregivers: From dance classes to job training (Rhitu Chatterjee, Goats and Sode, NPR, 10-16-23) Caring for a loved one can take a toll. Around the world, women and girls do the bulk of all caregiving, and an estimated 75% of unpaid care work. Bogotá, Colombia, is trying to ease the burden, offering free dance classes, job training, and other services to caretakers in the city. They told NPR these "care blocks" allow them to take time for themselves, destress, pursue new interests, finish their education and find job opportunities.
• 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 ARCH's Respite Locator.
• 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.
• The Emotional Side of Caregiving (Family Caregivers Alliance)
• 'A socially isolated group’: Millennial caregivers are increasing, but they face unique challenges (Bethany Ao, Philadelphia Inquirer, 12-3-19) As the baby boom generation ages, 10,000 Americans turn 65 daily. This population is driving a rising demand for family caregivers, along with the high cost of senior living and in-home care. Millennials are stepping in to fill that gap, and in many cases, make sacrifices to do so. The American Association of Retired Persons (AARP) estimated in a 2018 report that as of 2015, there were 40 million family caregivers. One in four caregivers is between ages 22 and 37. Over half of them identify as Hispanic or Latino, African American or Asian American — communities where multi-generational homes are common.
• Caregiver Syndrome (PDF, Family Caregivers' Network Society), “a debilitating condition brought on by unrelieved constant caring for a person with a chronic illness or dementia....Nowthat this syndrome has a name, caregivers will hopefully recognize the signs and symptoms early on and feel comfortable in seeking help."
• How To Build The ‘Village’ You Need As A Caregiver (Terry Fulmer, Huffington Post, 10-9-16). Of particular note in this article are three evidence-based programs and interventions "shown to help improve the lives of family caregivers by connecting them to community resources and organizing the health care team, although few such programs have been widely adopted." There are no easy links to finding how to participate in these programs -- if the programs themselves have links for consumers, please let me know! Here, meanwhile, are:
---Skills2Care (Jefferson University), a program to help caregivers manage more effectively.
---Savvy Caregiver (provides basic caregiver training in the basic knowledge, skills, and attitudes needed to handle the challenges of caring for someone with Alzheimer’s disease)
---Resources for Enhancing Alzheimer’s Caregiver Health (REACH). Dementia care specialists work one-on-one with caregivers, providing in-home and telephone coaching sessions to find workable solutions for such problems as caregiver stress, challenging behaviors, home safety, depression, self-care, stress, isolation, etc.
• Families Caring for an Aging America (free PDF online of report from the National Academies of Science, Engineering, and Medicine, 2016) "The study shines a much-needed spotlight on the essential, often heroic role that people caring for loved ones with dementia play in our fragmented health care system, while drawing a chilling picture of the tremendous impact this labor of love can have on caregivers’ health, well-being and financial security."~Terry Fulmer
• The Sacrifices of Caregiving – A Tricky Journey (Caregiver Help)
• Caring For A Loved One? Care For Yourself, Too (Emily Bazar, Kaiser Health News, or KHN, 6-2-17) There are places to reach out to for help.
• Love and Burnout: Caregivers, Too, Need Care (Constance Gustke, Retiring, NY Times, 9-2-16) The stress of caring for a wife with Alzheimer's landed Mark Donham in the emergency room with a heart attack. “It turned out be stress and strain,” said Mr. Donham, who also joined an Alzheimer’s support group for men. “When you’re in the middle of caregiving, you don’t know what caring for yourself means.” Researchers have found that the human immune system can be weakened by stress and strain for up to three years after caregiving ends. As a result, caregivers can be more prone to having serious illnesses. “It takes a village to help people die with dignity,” said Ms. Kaseburg, who lives on Mercer Island, east of Seattle, with her husband. “And if you’re lucky, it’s the village of family.” Check out caregiver support groups, in the meanwhile.
• 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.)
Caregiver online communities
• Support groups: Make connections, get help (Stress management, Mayo Clinic)
• AARP Caregiving provides information and resources to assist family caregivers
• Alzheimer's and Dementia Caregiver Support Groups
• Arch National Respite Locator and Resource Center (with links to select State Respite Registries)
• Cancer Caregiver Support Group (a Facebook group)
• Caregiver Corner (Eldercare Locator)
• The Caregiver Space (a Facebook group)
• CareGiving.com
• Caring Road support network
• Family Caregiver Alliance Sign up for CareNav, a free and user-friendly tool/online dashboard to help families navigate the complexities of the caregiving journey. Register online or call us toll-free at 800.445.8106.
• Grandfamilies a national resource in support of grandparents and other relatives raising children within and outside the child welfare system
• Inspire (Health and wellness support groups)
• TimeBanks, a "pay it forward" model that allows member A to perform a service for member B, thereby earning a "time dollar" that can be redeemed for an hour of member X's volunteered time.
• Tyze networks, a social network model of care, explained in this academic article.
• VA Caregiver Support Program (US Dept of Veterans Affairs)
Some of our favorite ways to help patients, caregivers, and their families
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.
• 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.
• Eldercare Locator A public service of the U.S. Administration on Aging connecting you to services for older adults and their families (e.g., adult daycare programs, in-home help, long-term care--by zipcode or state, or call 1-800-677-1116)
• Frequently Asked Questions About Caregiving (National Institute on Aging)
• Lotsa Helping Hands A free Web-based system to easily organize meals and help for friends & family in need.
• Meal Train Organize meals for a friend after a birth, surgery or illness. Organize a meal calendar (free).
• Hiring In-Home Help (Family Caregiver Alliance)
• Eyeon app Signaling for help has never been easier. This app allows users to create check-ins on their smartphone or tablet, and signal for help if the person doesn't respond. See New York Times story Single? No Kids? Don’t Fret: How to Plan Care in Your Later Years (Susan B. Garland, 3-23-18) Uses a network of friends and social groups, as well as a cellphone app, to make sure an "elder orphan" is checked on periodically.
• EverSafe Guard against fraud, scams & financial exploitation (specialized protection for seniors & families). "Monitors accounts for unusual spending and alerts the client or a trusted advocate of possible fraud."
• Elder Financial Protection Network ((707) 981-8403) Resources to protect against financial elder abuse.
• Share the Care (how to organize a group for caregiving--brings together friends and family in an organized network to provide supports and services for people who are chronically ill, terminally ill, or disabled.) Read the book: Share The Care: How to Organize a Group to Care for Someone Who Is Seriously Ill a book by Cappy Capossela and Sheila Warnock. (Requires a dedicated group of friends and family and a super organizer to run things.)
• Next Step in Care provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients. Transitions are moves between care settings (for example, hospital to home or rehab facility, or the start or end of home care agency services). Because transitions are often rushed, miscommunication and errors can occur.
• CareZone a way to organize health information and access vital health services, document patient symptoms, create medication lists, store important medical contact info (e.g., doctor and insurance info). Calendar includes reminders for refills (shareable with family and helpers).
• Transition Network's Caring Collaborative (a program of friendly and neighborly assistance, offered by members, to preserve and promote healthy independence).
• Omega Home Network A national membership organization that promotes the development and expansion of community homes for dying people. Through information sharing, consultation and educational offerings, it provides direct assistance to those developing and operating homes in their communities.
• The village movement Resources, links, and information.
• Medisafe (app) Makes medication management easier.
• Dispose My Meds (find medication disposal programs at an independent community pharmacy in your neighborhood)
• Agencies and organizations (Caregiver Action Network's excellent links in many categories)
• Administration for Community Living (ACL) ACL advocates across the federal government for older adults, people with disabilities, and families and caregivers; funds services and supports provided by primarily by states and networks of community-based; and invests in training, education, research and innovation. We manage a variety of programs (authorized by several statutes), providing assistance on health and wellness, protecting rights and preventing abuse, supporting consumer control, strengthening the networks of community-based organizations, funding research, and much more. (That seems pretty broad and murky, but there are lots of useful looking links.)
• 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 resources.
• 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.
• HealthFinder.gov provides health information and tools on caregiving and other topics.
• Instructional caregiver videos (Caregiver Action Network. Call 855-227-3640) Measuring Vital Signs. Range of Motion Exercises. Shower Bath with Assistance. Turning & Positioning an Elder in Bed. Helpful Products – Toileting and Incontinence.
• 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 Institute on Aging
• 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)'
• Regis College, which offers online education for someone interested in advanced eldercare -- in getting a masters in "Nursing Adult-Geriatric Nurse Practitioner"
• Strength for Caring.
Helpful articles and sites for caregivers
“I have seen in you what courage can be when there is no hope.” ~ May Sarton
• 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
• Late Stage and End-of-Life Care: Caregiving in the Final Stages of Life (HelpGuide.org)~
• Aunt Bertha, an online database and easy-to-use search tool that makes it easy to find need-based social service programs related to needs for food, health care, housing, education, and employment programs. “There’s almost a paralysis of choice, there’s so many choices,” says Aunt Bertha's founder, Erine Gray, a trim, young programmer who studied economics and computer science as an undergraduate and has a master’s degree from the LBJ School of Public Affairs. “People just can’t find stuff. They end up getting scared and intimidated. Agencies are bad at creating their own websites.” (‘Aunt Bertha’ site helps those in need find aid (Omar Gallagha, Austin American-Statesman).
• Caregiver.com
• Workforce Issues in Long-Term Care: Is There Hope for a Better Way Forward? ( Suzanne Meeks, PhD, FGSA, Howard B Degenholtz, PhD, FGSA, The Gerontologist, Special issue, June 2021) “Workforce issues are the most significant challenges facing the long-term care industry,” starts this special issue, with 17 articles covering
--- How policy and workplace practices might influence workforce size by attracting and retaining workers
--- How social and policy contexts affect recruitment and retention
--- How the day-to-day experiences of direct care workers might relate to quality of care.
• For 92 years my father buried his feelings. Then he started Zooming. (Laura Fraser, Washington Post,2-5-21) Forced by a pandemic to live by video, a once distant dad unlocks his memories and emotions.
• I never wanted to be a cancer expert, but then my wife got sick. A caregiver’s tale. (Saul Schwartz, WaPo, 2-17-14)
• Fax machines are still common in medicine — and med students are puzzled when forced to use this ancient technology (Christina Farr, CNBC, 2-12-18) Thousands of medical students across the country have never seen a fax machine, until the day they enter a hospital for the first time. Fax machines and pagers have virtually disappeared everywhere else. Health care is slower to digitize than most other industries...."It’s also considered safe and secure under today’s privacy laws. HIPAA, the federal regulations that govern how patient health records are shared, specifically state that fax machines or mail are acceptable methods for doctors to transmit a medical record." (Of course, other patients can often read what's sitting in the office fax machine.) You can usually get things faxed from a UPS store, Mail Boxes Etc. and office supply stores, among other places.
• 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.
• When Family Members Care for Aging Parents ( Sandeep Jauhar, NY Times, 9-19-18) "My siblings and I joined the ranks of the 15 million or so unpaid and untrained family caregivers for older adults in the United States. A recent study found that almost half of this largely invisible work force spends, on average, nearly 30 hours a week providing care to relatives, many of whom have dementia, an estimated more than $400 billion worth of annual unpaid time. The work takes its toll. These sons, daughters, husbands and wives are at increased risk of developing depression, as well as physical and financial difficulties, including loss of job productivity. Being sick and elderly in this country can be terrifying. Having a sick and elderly loved one is often a full-time job."
• Best Medical Alert Companies, 2016 (BestCompany) 63 Total Companies Rated 1,006 Real Customer Reviews
• A Caregiver's Guide to Wandering and Elopement (mmLearn.org, a Caregiver Training blog, 9-30-15) "Elopement simply describes an incident in which a person with cognitive loss wanders out of a safe area, such as a home or nursing facility. In some cases, elopement results from an intentional attempt to leave. In others, it's an unintentional act caused by disorientation and memory loss."
What Is the Difference Between Wandering & Elopement? "While some use these terms interchangeably, nursing home residents who elope from a building and nursing home residents who wander often have different motives. ... When eloping, residents believe they must go or do something outside the building." ~T&R attorneys
• Getting Serious About Home Care for Aging Americans (Michael Hodin, Fiscal Times, 6-20-16) "...working family caregivers are 50 percent more likely than their non-caregiver colleagues to experience daily physical pain. They also suffer from subtle but equally intrusive bouts of mental and emotional anguish. The report highlights the growing importance of formal elder caregiving, needed even more as demographic and cultural changes increase the burdens on family caregivers....In the process of improving lives, home care is creating U.S. jobs while exporting this quality care model across the planet."
• Tips for Caregiving at Home (Amy Goyer, AARP, 8-17-16) Tips on home modifications (for safety and ease of movement), keeping safety a priority, looking into h0me-based services, doing your homework when hiring paid caregivers.
• 6 Tips for Choosing Family Caregiving Technology (Amy Goyer, AARP, 9-20-16)
• Care for Yourself (AARP). Start with Five Tips for Sandwiched Caregivers (Amy Goyer, AARP), Ways to find balance in a life with competing demands
• Seeking Family Forgiveness Through Caregiving (Barry J. Jacobs, AARP, 12-7-15) How a black sheep can become a white knight
• Caring for a parent with dementia (AARP community -- receive and share advice with others doing the same thing)
• AARP Local Caregiver Resource Guides
• Daddy Issues: Why caring for my aging father has me wishing he would die. (Sandra Tsing Loh, The Atlantic, March 2012). The stark reality, presented 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.
• 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!
• 4 Things Caregiving Taught Me (Jeff Yeager, AARP, 8-4-16) The popular savings expert shares his experience caring for his mother who battled Lewy body dementia. "After my father's death, my wife and I moved to Ohio to care for my mother in my parents' home. With support from my brother and other family members, as well as an extraordinary part-time care worker and in-home hospice services, each day until her recent passing filled a full spectrum of emotions, from tremendous sadness and anxiety to occasional joy and even a new appreciation of what it means to be alive."
• 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.
• The Aging of the Baby Boom and the Growing Care Gap:A Look at Future Declines in the Availability of Family Caregivers (Donald Redfoot, Lynn Feinberg, and Ari Houser, AARP Public Policy Institute, 2013) "In 2010, the caregiver support ratio was more than 7 potential caregivers for every person in the high-risk years of 80-plus. By 2030, the ratio is projected to decline sharply to 4 to 1; and it is expected to further fall to less than 3 to 1 in 2050, when all boomers will be in the high-risk years of late life."
• 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).
• American Heart Association Caregiver page
• 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’s Guide to Sleep (Purple, 4-22-19)
• 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).
Books by, for, and about caregiving and 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. 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 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
• 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)
A number of books in the list above (about caregiving generally) are also about elder care. These are particularly helpful and make good gifts. • The Bill from My Father: A Memoir by Bernard Cooper ("a brusquely tender elegy to his baffling father, Edward").
• Being Mortal: Illness, Medicine, and What Matters in the End by Atul Gawande. “It is not death that the very old tell me they fear,” he writes. “It is what happens short of death.” But we don’t think about it enough, and we talk about it even less. In the chapter "Letting Go," he talks about the powerful effect of frequent conversations about goals and wishes at the end of life — not just bland, advanced medical directives in writing but continuing talks out loud.
• Being My Mom's Mom by Loretta Anne Woodward Veney. Every day with a person suffering from dementia can be different, writes Veney, which requires you “to love each of the different people your loved one may become.” Part memoir, part how-to, it may both make you cry and make you laugh, as it does other readers; and will probably help prepare you for dealing with an elder with dementia.
• A Bittersweet Season: Caring for Our Aging Parents--and Ourselves by Jane Gross. The New York Times long-term expert on elder care (and founder of the New Age blog) writes about her own three-year experience and lessons learned caring for her own 85-year-old mother, who sees herself as rotting to death (or as a physician says, "inching toward oblivion"). Telling her own story, angrily, she weaves in information about Medicare and Medicaid and the financial side of elder care, and other insights about end-of-life care that we don't know we don't know--so we can avoid some of the pitfalls and potential mistakes Gross warns us about.
• 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
• Life with Pop: Lessons on Caring for an Aging Parent by Janis Abrahms Spring with Michael Spring. Reader Janet Corrette "read this book again for at least the third time. A truly loving tribute to Dr. Spring and her Dad as they travel as they travel his final journey as a widower in an independent living facility. His and her wrenching choices from where, how, and when he will live, and ultimately die, will make you love this charming man, and the trust and love between daughter and father. This book will give you courage to face your own last years with a loved one, even yourself."
• 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
• The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss by Nancy L. Mace and Peter V. Rabins. A must for anyone caring for someone with any form of dementia. As one reader puts it, "This gives you a lifeline to loving that person through this process and caring for yourself as a caregiver."
• When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions by Paula Span (New Old Age columnist for the Times)
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
Caring for patients with dementia
EXPANDED AND UPDATED HAS MOVED HERE:
Caring for patient with dementia
IN THE SECTION ON
Alzheimer's disease and other forms of dementia
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)
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.