Organizations, Newsletters, etc.
These are the organizations, newsletters, and articles that helped me come to terms with the seismic shift in roles from daughter to caregiver to care "partner."
It's by no means a comprehensive list, just my favorites.
If you are new to caregiving, or have been doing it a while and need more support, contact this national support and advocacy group. I recommend signing up for their e-newsletter, and, if you have questions about caregiver resources in your area, contacting one of your state's CAN volunteer representatives listed on the site. (I am a representative for New York State: click here for my profile. Click here to download a pdf of a presentation about the Caregiver Action Network (formerly the National Family Caregivers Association) I gave to the New York State Bureau of Long-Term Care Services and Caregiver Supports.) Take advantage of their substantial online library of resources for caregivers, links to organizations, e-communities, pen pal program, and caregiver forums.
USAgainstAlzheimer's Community Support Group
A new Facebook group for individuals with Alzheimer's disease or other dementias, family members, and friends of Alzheimer's and dementia patients world-wide. A venue to share your questions, tips, thoughts, and advice and seek the same from your peers.
The Eden Alternative®
A national not-for-profit organization, founded in 1994 by Dr. William Thomas, a Harvard-educated physician and geriatrician, based on the core belief that aging is a continued stage of growth and development rather than a period of decline. The mission of the Eden Alternative is to improve the well-being of Elders and those who care for them by transforming the communities in which they live and work. The vision is to eliminate loneliness, helplessness and boredom. The Eden Alternative has trained over 23,000 Eden Associates and has over 200 registered homes in the United States, Canada, Europe and Australia.
Dr. Bill Thomas's blog (founder of The Eden Alternative, above), and many other contributors.
Eden at Home®
An initiative of the Eden Alternative, EAH captures the essence and successes of the Eden Alternative as they apply to improving quality of life for Elders living at home and their care partners. The concept of "home" here relates not only to the home care environment, but also to the Elder's community, to the Elder's world, and how she relates to and interacts with it. EAH offers a set of innovative efforts inspired by these key ideas: Elders have a legacy or gift to share with their loved ones and their communities; meaningful care nurtures the human spirit as well as the human bod; meaningful care also recognizes and nurtures each person's unique capacity for growth; The Elder is actively involved as a care partner in her own care; and Elderhood is honored as a valued phase of human development, not decline.
Allen Power's Blog
G. Allen Power, M.D., is the author of the book Dementia Beyond Drugs: Changing the Culture of Care, the Eden Mentor at St. John’s Home in Rochester, NY, and a Clinical Associate Professor of Medicine at the University of Rochester. He is a board certified internist and geriatrician, and a Certified Eden Alternative Educator and a member of the Eden Alternative board of directors. He encourages us to think of dementia not in the "traditional" way as tragic, irreversible, costly and burdensome, but as a shift in the way a person perceives the world, a state in which learning can and does still occur, and in which the person continues to have the potential for life and growth.
The Alzheimer's Reading Room
One of the top Alzheimer's blogs online, Bob DeMarco's site "tackle[s] real world problems and offer[s] advice and solutions on issues like: repetitive questioning, challenging behavior, how to understand Alzheimer's disease, how to cope with the disease, and how to communicate effectively with a person living with dementia." Sign up to receive his posts by email.
Dementia Specialist Consulting
Judy Berry, founder of Dementia Specialist Consulting, is an award-winning national leader in changing the culture of dementia care. She is the founder of the Lakeview Ranch Model of Specialized Dementia Care®, which is modeled after her conviction that people living with dementia are "still in there." I was so impressed with her work that I wrote my very first blog post about Lakeview Ranch.
Cathy Greenblat Photography
Cathy Greenblat is Professor Emerita of Sociology at Rutgers University, a Visiting Researcher at the International Observatory of End of Life Care (IOELC), University of Lancaster, UK, , and an Artist in Residence at the Hospital Network of Nice, France (CHU de Nice). I highly recommend her book of photographs of Alzheimer's care in the United States, called Alive with Alzheimer's (2004, University of Chicago Press). Her new book, Love, Loss and Laughter: Seeing Alzheimer's Differently, includes photographs of Alzheimer's care in the U.S., France, India, Japan, and the Dominican Republic.
The Green House Project®
A revolutionary new model of care developed by Dr. Bill Thomas, founder of The Eden Alternative (above). The Green House model takes the ideas and principles of the Eden Alternative and starts from the ground up to create small houses for 6-10 Elders who require skilled nursing care and who want to live a rich life outside of a large institution.
Sage Work Massage and Reiki for Elders: An inspiring example of a massage therapist who specializes in bodywork for elders. In an article, she writes that "as a care partner and a massage therapist, I can offer elders and others on the [caregiving] team relaxation and increased comfort and ease from sore, tight muscles, as well as lending an ear to hear them and be present with them."
The Fearless Caregiver e-Newsletter
Bi-weekly e-newsletter by the publishers of Today's Caregiver Magazine and caregiver.com.
A public service of the U.S. Administration on Aging that connects you to services for older adults and their families. Just type in your zip code and click the type of help you're seeking (for example, information about Alzheimer's disease, health insurance, in-home services, transportation, and long-term care) to see local agencies. If you're caring for an elderly parent, I would suggest using this service to find your county's Office for the Aging, which could offer you free counseling, a resource library, and often caregiver support groups.
Lotsa Helping Hands
If you're a caregiver, or know of a caregiver, who needs help, use this free website to organize friends, family and colleagues to each help as little or as much as they can. Set up this private, secure website—it's easy—and then have your friends click on the help they can offer—shopping, cooking a meal, visiting, etc.—on the days and times they're available. The website will email them reminders, and you don't have to coordinate the days and times yourself. Build your own caregiving community where many hands make light work. Many people find that if they can sign up to do tasks easily, without a lot of back-and-forth coordination, they enjoy their caregiving duties and get much in return.
When my mother first moved to a nursing home and went through a period of refusing to eat and losing weight rapidly, one of the home's administrators asked me how I'd feel about her being put on a feeding tube. I said, "No, that's not what my mother would have wanted." But I felt so anguished about that decision that I called my local Alzheimer's Association to speak to a counselor. He reassured me and gave me lots of information that I might not have gotten from other sources. I encourage anyone with questions about dementia caregiving to contact their local Alzheimer's Association. (Mom, by the way, started eating again, and, a year and a half later, is doing quite well.)
Family Caregiver Alliance, and the
National Alliance for Caregiving (with online Family Care Resource Clearinghouse)
Two national advocacy and support groups that I haven't used but that I know many people have.
The federal government's new (2012) website with information about Alzheimer's disease and related dementias.
Dementia coaching for individual families, in-home, and for professional caregivers serving people in the Alzheimer’s community.
National Board for Certified Counselors
Enter your zip code to find a certified counselor in your area. Or, if you are a member of a caregiver support group, ask for recommendations for a counselor who has experience with elder care issues. Most take medical insurance.
(For free counseling, search online for your county's name and "Family and Children's Services." You may find an agency, like the one in my county, that offers free counseling to family caregivers. One of the first kinds of support I sought when my mother moved in with us was this free consultation and counseling.)
National Council of Certified Dementia Practitioners:
Provides Alzheimer's and dementia education for family caregivers, clergy, health care professionals, front line staff. NCCDP offers free resources such as the elopement resources. Their annual Alzheimer's Dementia Staff Education Week is Feb. 14th to the 21st. Begin downloading free Power Points in-services Nov. 1st to March 15th.
Meals on Wheels Low-cost hot meals delivered to seniors.
Caring From a Distance: Help for those who care for a loved one long-distance.
National Adult Day Services Association
Visit this site to find an Adult Day Care program in your area. For elders who need supervision, opportunities to socialize, and/or support with activities of daily living for a few hours a day. If you're caring for someone in your home this might be a good way to make time for yourself.
211 Information and Referral Search
Call 2-1-1 for help with food, housing, health care, counseling and more.
National Center on Senior Transportation
To find door-to-door transportation in your area. I found out the hard way, quite late, that in my area my mother qualifies for the extended hours of our local wheelchair van service for the disabled.
National Hospice and Palliative Care Organization
National Association of Professional Geriatric Care Managers
To find a geriatric care manager to help you coordinate care and make those major caregiving decisions.
National Academy of Elder Law Attorneys
To find an attorney in your area familiar with the legalities of elder care such as Power of Attorneys, Living Wills, Medicaid rules, etc. You will need the best advice possible.