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      Inside the Dementia
     Epidemic: A Daughter's
     Memoir

     
     
      On Wall Street Journal best seller
      list (May 1, 2015)

     


    One
    of Alzheimers.net's 2014 Top Alzheimer's Books for Caregivers

    Winner of the Memoir category of the 2013 Next Generation Indie Book Awards

    Winner of a Silver Medal in the Health/Medical category of the 2013 Readers' Favorite International Book Awards (and finalist in the Memoir category)

    Finalist, 2013 Eric Hoffer Book Award for Excellence in Publishing

    Winner of an Honorable Mention in the Life Stories category of the 20th Annual Writer’s Digest Book Awards 

    Finalist, 2013 Indie Excellence Book Awards

    Finalist, 2013 Santa Fe Writer's Project Literary Awards Program, Non-fiction category

     

       

     

     

    Inside the Dementia Epidemic: A Daughter's Memoir shares the lessons I learned over 8 years of caregiving at home and in a range of dementia care facilities. I describe not only what I learned about navigating the system, but how I learned to see Alzheimer's disease differently—not as a "long good-bye," as it's often called, but as a "long hello." Through caregiving, my challenging relationship with my mother was transformed, and I learned to enjoy and nurture her spirit through the last stages of dementia.

    Appendixes share facts about dementia that I wish I had known years ago, such as how to get a diagnosis of Alzheimer's disease; what medications are approved to lessen the symptoms of Alzheimer's disease; lesser-known risk factors for dementia; and possible antidotes. I include my favorite resources for caregivers, my source notes, and an index.

    Inside the Dementia Epidemic: A Daughter's Memoir is available in paperback and hardcover, as an e-book for Apple devices, the Nook, and Kindle, and on Kobo.

    Reviews and Testimonials

    Order the Book

    ______________________________________________________

    PHOTOS:

    The photo at the very top of this page is of my mother, Judy, in 2010, smiling up at Suzanne, a massage therapist I hired who specializes in bodywork for elders.  Suzanne massaged her hands, arms, upper back and legs, talked to her, and played music for her.  [photo by Jason Kates van Staveren]

    Right: My mother at her 75th birthday party in 2007, three years after she could no longer live alone. A few days after this picture was taken she fell, fractured her pelvis and needed more care than her assisted living facility could provide. I had to quickly research alternatives.









    In 1996, Judy and her grandson, Andrew, age 1, on the shale beach outside the cottage on the lake in Upstate New York where she lived by herself for 25 years. It's his first visit, and she's showing him the "big lake water" and how to draw on the flat rocks with pencil-shaped pieces of shale. Her worrisome behavior starts around this time, but as her daughter I don't realize what is going on until much, much later.

    Above: My mother, age 74, and I at the cottage in 2006 with her old miniature Schnauzer, Trinka. I can see the stress of those early caregiving years in my face and in my extra weight. Little did I know how much I would learn over the coming years.

     

     

     

     

     

     

     

    Above: Judy, age 79, and me in early 2012 at the nursing home Judy moved into in 2010. Mom lived with advanced Alzheimer's disease and vascular dementia until she passed away in late 2012, but until the end she often shared her lovely smile. 

     

    Join the fight to stop Alzheimer's by 2020:

        

     

    For caregiver support and resources, visit the Caregiver Action Network. (Membership is free if you are a current family caregiver):

                        

        The Purple Angel--a symbol of hope and dementia awareness

    Wednesday
    Aug102011

    Resources

    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.

    The Caregiver Action Network

    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.

    ChangingAging Blog
    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."

    "Letting Go of My Father" (article), Jonathan Rauch, The Atlantic, April 2010.

    The Fearless Caregiver e-Newsletter
    Bi-weekly e-newsletter by the publishers of Today's Caregiver Magazine and caregiver.com.

    Eldercare Locator
    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.

    Alzheimer's Association
    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
    Na
    tional 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.

    www.Alzheimers.gov
    The federal government's new (2012) website with information about Alzheimer's disease and related dementias.

    Engaging Alzheimer's
    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.