Guide for Caregivers:
Dr. Benjamin Pratt suggests …
THE FOLLOWING GROUPS, WEBSITES and RESOURCES are recommendations from Dr. Benjamin Pratt—the pastoral counselor, caregiver and author of Guide for Caregivers: Keeping Your Spirit Healthy When Your Caregiver Duties and Responsibilities Are Dragging You Down.
We share these recommendations as part of the ReadTheSpirit Caregivers project—as an aid in your own online research into assistance you need.
We know that the following groups have a track record of helping people.
NOTE: We have taken special care in these entries to provide links to what we regard as especially helpful areas of these groups’ websites.
This list of Recommended Resources is just the beginning …
Our latest additions: February 6. The list will expand through 2012.
Please, help by sharing your suggestions!
Know a group, website or other resource that should be listed here?
Email us at [email protected]
Inspiration from ‘Superman’
Dana and Christopher Reeve Foundation
I offer this resource for caregivers in grateful memory of Dana (March 17, 1961, to March 6, 2006) and Christopher (September 25, 1952, to October 10, 2004) Reeve. As caregivers, we face the question from friends: “Are you a Superman?” Or we ask ourselves: “Am I a superwoman?” Many of us feel we need to be emotionally, physically and spiritually a super person to accomplish and survive our daily tasks. It can be a big mistake to lay such expectations upon ourselves. I found this very down-to-earth, thoughtful and helpful interview with Dana Reeve, the wife of the man many of us thought of as Superman. Read this excellent interview with Dana Reeve and take a moment to visit the Foundation established by Christopher and Dana Reeve.
Dr. Benjamin Pratt
People You Should Know:
NOTE: As you scroll down, you will see that other recommendations on this page lead you to websites and helpful organizations. Now, we also are including recommendations of talented people who share caregiving issues in creative ways. Here is what Dr. Benjamin Pratt says about Jeanne Robertson:
I teach that laughter is vital for caregivers to sustain a healthy spirit. Here is a marvelous woman who will keep you laughing. 6’ 2” Jeanne Robertson is a Person You Should Know. Jeanne Robertson is a professional speaker who steps on stage at 6-foot-2-inches and quickly engages audiences with humor about real-life experiences. Speaking to thousands of people annually, she utilizes her positively funny style to illustrate that a sense of humor is much more than a laughing matter. It is a strategy for success.
Enjoy these two episodes from her talks …
Family Caregiver Alliance
If you are providing care to an older or disabled family member or friend, you know that navigating the long-term care system can be difficult. The Family Caregiver Alliance was founded in 1977 among a group of families and community leaders in San Francisco. It grew into the first nationwide community-based nonprofit to focus on the needs of families and friends providing long-term care at home. Within the larger site, the state-by-state resource provided by the Family Caregiver Alliance is intended to help you locate government, nonprofit, and private programs in your area. It includes services for family caregivers, as well as resources for older or disabled adults living at home or in a residential facility. It also includes information on government health and disability programs, legal resources, disease-specific organizations and much more.
Cystic Fibrosis Foundation
When the Cystic Fibrosis (CF) Foundation was established in 1955, most children who developed the disorder did not live to attend elementary school. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product lead to life-threatening lung infections and problems with properly absorbing food. Today, the predicted median age of survival is in the late 30s, thanks—in large part—to the care provided though the national network of CF Foundation-accredited centers. This Care Center Network provides expert cystic fibrosis care for people living with the disease and supports 260 clinics that specialize in caring for children and adults with CF. Besides taking care of people with CF, care centers also focus on the entire circle of men and women who are primary caregivers. In addition to an excellent monthly online newsletter, CFF provides a Patient Assistance Resource Library that can help families navigate the maze of health care.
Multiple Sclerosis Society
Multiple Sclerosis Foundation
Fear. Isolation. Confusion. These feelings are common when someone is diagnosed with MS. Although more than 450,000 people in the United States have multiple sclerosis, people who are newly diagnosed have often never heard of the disease; they don’t know where to turn for support. MS was identified as a disorder in the 1860s but, to this day, there is no cure. Treatments and support groups work with people to help return function after an MS attack, prevent further attacks and prevent disability.
There are at least a dozen MS organizations and foundations working across the U.S. on various issues from funding research and advocacy to directly helping families. The Society and the Foundation are two of the most important non-profits with a solid track record across the nation.
The Multiple Sclerosis Society was founded in 1946 and works on promoting research, services for people living with MS, education and advocacy. Look around the website and you will find lots of information on all of these ongoing efforts. If you are a caregiver, especially interested in advocacy and keeping up on new efforts to combat the effects of MS, check out the group’s Advocacy section. Advocacy takes many forms through the Society, but on this landing page you’ll find links to efforts that may interest you.
The Multiple Sclerosis Foundation was established in 1986 with a mission and a range of programs similar to that of the Society. If you or a loved one have just received this diagnosis, you might start on this landing page within the MSF site, called Coping with Multiple Sclerosis. The links from this page provide answers to all sorts of common questions about topics ranging from “Newly Diagnosed” and “The Search for Causes, Treatments and a Cure” to special topics like “Pediatric MS.”
While researching the new book, A Guide For Caregivers, I attended one of the Alzheimer’s Association’s excellent educational programs designed to help caregivers. I can personally vouch for the quality of their programs. This global organization now ranks as one of the most important first stops families should make as they prepare to care for a loved one with this kind of health issue. In 1979, Jerome H. Stone and representatives from several family support groups met with the National Institute on Aging to explore the value of a national, independent, nonprofit organization to complement federal efforts surrounding Alzheimer’s disease. That meeting resulted in the April 10, 1980, formation of the Alzheimer’s Association with Stone as founding president. The Alzheimer’s Association works on a global, national and local level to enhance care and support for all those affected by Alzheimer’s and related dementias and is the largest private, nonprofit funder of Alzheimer’s research. Local chapters provide services within many communities. Use the group’s main website to find a chapter near you. Or call the professionally staffed 24/7 Helpline at 1-800-272-3900 for information and advice, including translation services in more than 170 languages. The organization runs more than 4,500 support groups throughout the country and connects people around the globe through their online message boards and deliver 20,000 education programs annually. While writing A Guide For Caregivers I attended one of their excellent educational programs for caregivers. You can find numerous resources through this excellent Association site, but a good place to begin is http://www.alz.org/carefinder/index.asp.
Home Caregiver Network
Frustrated by a new challenge in your home? Want someone to show you how to do it? The Home Care Library is developing a series of helpful How To videos on specific skills home-based caregivers need to learn. You may not need all of these videos, but when you need to answer a crucial new challenge? These videos can help. In addition to the basic How To lessons, some videos help you realize the importance of taking care of yourself and how to do it. Among the general themes the Network is trying to cover: How to cope with the numerous challenges of caregiving, successful communications skills, what to look for when choosing a nursing or long-term care facility, and extensive tips and information to make the home caregiving experience more enjoyable. Once you become a subscriber to The Home Care Library you’ll be able to watch all of the videos you like— as many times as you like. Videos range from Basic to Advanced Caregiving Skills, Helpful Products, Coping Skills, Emotional Support and techniques as essential as Moving a Person to the Side of the Bed. For this recommendation, we’ve had several people preview videos on the site, including colleagues who work with caregivers, and what we’ve seen is quite helpful. If you decide to subscribe, you may want to try a single month and judge the usefulness of the videos for your own situation. We don’t recommend paying for a full year of the service until you’re sure it’s helpful in an ongoing way.
One of the most popular chapters in our new Guide for Caregivers encourages people simply to laugh—and laugh on a regular basis! A sense of sense of humor is vital to keep your spirit healthy. Here is an opportunity to load up some guaranteed laughs! The Funny Times is a monthly forum for humor and satire for people who understand that their world does, indeed, seem totally insane sometimes. The Funny Times team reads thousands of cartoons to find and collect what they regard as the “best of the best” each month. Celebrating their 25th year, they supply us with delightfully funny, intelligent humor. Every issue has more than 100 cartoons and at least a dozen written features. You may find some old favorites as well as up-and-coming artists you’ve never met before. “Come over to the funny side and join our more than 70,000 subscribers who love to laugh at us,” say Ray Lesser and Susan Wolpert, who call themselves Publishers, Editors and Troublemakers at The Funny Times.
United Cerebral Palsy
If you are familiar with Cerebral Palsy, that’s because United Cerebral Palsy is noted among charitable nonprofits for its early development of fundraising telethons. The group was founded just after World War II by four friends, including Leonard Goldenson, who later was president of ABC Television. Goldenson and his wife Isabel had a daughter with cerebral palsy; so he began raising funds for supporting disabled people via a telethon from a station in Chicago. From those roots, United Cerebral Palsy became one of the most important nonprofits advocating and providing support for people with a spectrum of disabilities. The backbone of UCP is the services and supports that are provided by its approximately 100 affiliates worldwide, which reach 176,000 children and adults, daily. Affiliates’ services include housing, therapy, assistive technology training, early intervention programs, individual and family support, social and recreation programs, community living, state and local referrals, employment assistance and advocacy. Each affiliate offers a range of services tailored to its community’s needs. Their One Stop Resource Guide helps you find answers to the most commonly asked questions. And, for people without disabilities, UCP provides a very helpful Ten Commandments of Etiquette for Communicating with People with Disabilities.
ARCH National Respite Network
Respite is a lifeline for millions of hard-working caregivers nationwide. The term, as defined by ARCH (Access to Respite Care and Help) means “planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers who are caring for that child or adult.” Millions need this assistance—but quality respite care often is difficult to find. The mission of the ARCH National Respite Network and Resource Center is to assist and promote the development of quality respite and crisis care programs in the United States and to help families locate these services in their communities. The National Respite Locator Service helps parents, family caregivers, and professionals find respite services matching their needs—and located appropriately close to their homes. Are you interested in making a difference on this issue? The group’s website also provides links to current legislative efforts to expand respite care. You might want to start by reading the “About Us” page that summarize’s the group’s mission and history.
National Alliance on Mental Illness
NAMI is the National Alliance on Mental Illness, the nation’s largest grassroots organization dedicated to improving the lives of individuals and families affected by mental illness. NAMI advocates for access to services, treatment, support and research. These days, the nonprofit organization that was founded in 1979 also works on issues of particular concern to our thousands of recent veterans and their families. For emerging issues and news about NAMI’s latest programs, watch the Newsroom section of the group’s website. NAMI works on national, state and local levels. The national office coordinates work through organizations in all 50 states plus more than 1,000 local affiliates. The group’s website now is enormous. So, depending on your particular interest, click around to find information on everything from support groups to NAMI’s “Legislative Action Center” to ways you can help fight stigma against mental illness. If you’re just grappling with news of mental illness in your circle of family and friends, check out NAMI’s extensive section on basic information about 17 different forms of mental illness.
Lotsa Helping Hands
Lotsa Helping Hands is trying to close the “digital divide” that keeps many caregivers and care receivers from using online tools to connect with a larger community. Clearly, there are many powerful connective tools families can use—if they know about them and understand how to use them. Lotsa Hands makes the process simple, flexible and secure. A Washington Times story about the group reported: “Lotsa communities can be created and dissolved easily, and revolve around all kinds of issues: parents who need help caring for their newborn triplets, military families caring for loved ones who came home wounded, families caring for someone with Alzheimer’s disease or cancer. Some communities last only a few months.” Here’s the About Us page that explains the group’s guiding vision. But you’ll find the How It Works page more helpful in welcoming newcomers to the site’s nuts and bolts.
National Family Caregivers Assoc.
Believe in Yourself. Protect Your Health. Reach Out for Help. Speak Up for Your Rights. Those are Caring Every Day messages from the National Family Caregivers Association (NFCA). Founded in 1993, NFCA educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness, disability or frailties of old age. A major NFCA priority is fostering a grater public awareness of caregiving challenges, educating caregivers themselves and helping family caregivers work more effectively with healthcare providers. Look within the NFCA site and you’ll find the Caregiving Resources section. Sign up with the group and you’ll have access to a wide array of helpful information. NFCA’s News Releases section also is worth a look. In the last couple of years, the group has published a series of news items about everything from national polls to new studies of caregiving.
AARP is a nonprofit, nonpartisan organization with a membership that helps people age 50 and over find independence, choice and control in ways that are beneficial and affordable to them. Since 1958, this vast organization has been leading a revolution in the way people view and live the later years of life. AARP members reflect a wide range of attitudes, cultures, lifestyles and beliefs but this collection of diverse individuals function as one through this organization to influence positive change. You may be familiar with AARP, but the organization offers such a vast array of information that it may be tricky to find the Caregiving area on AARP’s website. The AARP Caregiving Resources Center is worth checking out! As a Caregiver, AARP emphasizes that you’re not in this alone. Nearly 44 million Americans are taking care of an older family member at any given time. Whether you’re just starting out in your new role or caring for someone who’s near the end of his or her life, this AARP resource center will provide you with all the information you’ll need to help make the job as easy—and rewarding—as possible. They offer advice and assistance on topics such as starting out, financial and legal issues, ideas about housing and much more.
The Autism Society
The Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. The nonprofit increases public awareness about the day-to-day issues faced by people across the spectrum of autism, advocating for appropriate services for individuals throughout their lifespan, and providing the latest information regarding treatment, education, research and advocacy. The Autism Society’s strength is in its vibrant grassroots community of chapters and its network of national partners and collaborators. For Caregivers in particular, the Autism Society has developed in-depth information on a variety of topics related to living with autism. This information is by no means exhaustive, but it should help to equip families with some of the basic tools they may need to provide the best outcomes for their loved ones with forms of autism. These publications are available through the group’s Resource Materials page. Note: You will want to register with the Autism Society to use these resources and get the group’s free biweekly newsletter (you can unsubscribe from that e-newsletter anytime).
The Arc is the nation’s largest grassroots organization advocating for the rights and full inclusion of people with intellectual and developmental disabilities and their families. Founded in 1950, the Arc has 140,000 members in 700 chapters—so there is sure to be an Arc group near you. In addition to its major goal of changing public perceptions about people with conditions ranging from autism to Down syndrome—the Arc also is a support group that provides resources to families. Within the larger Arc website, check out the Resources page that includes an ever-changing array of materials:
You’ll find basic fact sheets on various issues that concern families, other kinds of publications, too—and a blog with postings about recent news.
For 60 years, Mended Hearts has served as a national support group for heart-disease patients, their families and caregivers. With chapters in more than 200 communities nationwide, you’re likely to find one nearby. Recognized for its role in facilitating a positive patient-care experience, Mended Hearts partners with 460 hospitals and rehabilitation clinics and offers services to heart patients through visiting programs, support group meetings and educational forums. The national office also publishes a quarterly magazine, Heartbeat, to share news and inspirational stories. Within the larger Mended Hearts website, check out the Resources page: The best choice is “Managing Your Heart Health,” which downloads a 40-page, full-color guides to issues you—or a loved one—will face after any serious episode with the heart.
ReadTheSpirit Editor David Crumm discovered CaringBridge—like so many other men and women—when his far-flung family hit an unexpected crisis. His uncle was undergoing critical medical procedures and the extended family wanted updates. CaringBridge let relatives on the scene pass along vital news. In our Caregivers Resources list, CaringBridge ranks as one of the newest organizations. Founder Sona Mehring developed this concept after a hastily created personal website back in 1997 helped her friends through a crisis. This worked so well that Mehring wanted to make the basic web tools available to everyone. Mehring is based in Minneapolis, and her leadership team is clustered around the Twin Cities. But, their web concept now is used each day by half a million people. Within the larger website, check out the Our Service page, which provides lots of information about using this free resources for your own circle of loved ones.
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(Originally published at readthespirit.com, an online journal covering religion and cultural diversity.)