Lessons learned from 7 years of caregiving at home, in assisted living, rehab, “memory care,” and a nursing home, beautifully told.
After years of work, I am completing the final edits on my book, Inside the Dementia Epidemic: A Daughter’s Memoir, which I plan to self-publish. I am an editor with a master's in English Education from Teachers College, Columbia University. I love language, and I love story. This is my first book. (Here's an excerpt.)
Seven years ago, my mother, Judy, who is living with late-stage Alzheimer’s disease, moved in with me and my young family. I write about the challenges I faced as her dementia worsened, and how I sought help as she moved from her remote cottage on a lake in Upstate New York, to our home in a cohousing neighborhood, then to an assisted living facility, a rehabilitation center when she fell and suffered a fracture, a “memory care” facility for people with dementia, and a nursing home.
Why Support This Book Project?
I believe that my book is unique and that it fills a real need. Most memoirs by adult children caring for a parent with dementia focus on the extreme stress and craziness of caregiving at home with little support. Few of these caregivers have written detailed and realistic scenes in multiple care settings, as I have; few describe how they found adequate support and resources; and few offer hope that the caregiving journey can be anything other than a crushing self-sacrifice. They describe dementia itself as a tragic wasting away and a long, painful good-bye—indeed, as the complete erasure of the person who once was. What I have experienced and felt with my mother is different, and I want to share our story. Through intimate and detailed scenes, I show how my mother is not an empty shell, as people with Alzheimer’s are often described, but still “Judy,” still here—a whole person able to love and be loved.
Our years together have presented twists and turns that I never expected, transforming our troubled relationship, and affecting me profoundly.
It's More Than Memoir
Inside the Dementia Epidemic is more than memoir, though—it’s a call to action. I write about why I support certain cutting-edge movements in elder care such as the Eden Alternative® and The Green House Project®. And I summarize the latest dementia research, ways we might be able to avoid developing dementia ourselves, and the need for an immediate and substantial increase in research funding.
One in 8 people in the United States will develop some form of dementia. Once you turn 85, you have no less than a 50% chance of developing Alzheimer's disease. As people live longer, and the Boomers age, nearly every one of us will have a family member or friend with dementia. Alzheimer's disease is the only cause of death in the top 10 with no way to slow its progression, and no cure.
If we manage to avoid dementia ourselves, we are very likely to become the caregiver for someone with dementia. As Suzanne Mintz, president of the National Family Caregivers Association, has said, moving from being a daughter or a son to being a family caregiver is the equivalent of taking on a huge, complex job. It’s a job that often catches us by surprise, and it’s one that we are not prepared for. None of us should try to do this job alone. We need all the information and support we can find.
My book will be inspiring and informative for any adult child who finds herself in the midst of her own caregiving journey (or anticipates having to become a caregiver in the future); any Boomer concerned about his quality of life, and the lives of his loved ones, if he develops dementia or needs long-term care; professionals and educators in elder care; and anyone who enjoys a story about mothers and daughters.
Click here to read a chapter or two of the manuscript.
To "Self" Publish Well, You Need Other People!
I will self-publish Inside the Dementia Epidemic through my own publishing house, Dundee-Lakemont Press, distribute it online through Barnes and Noble, Amazon, and other online bookstores, and promote the book internationally through my online contacts. (I could probably secure an agent and a traditional publisher, but self-publishing is often a smart way to go these days if you're a first-time author who is committed to working hard, as I am.)
I want to produce the highest-quality book that I can. I need your help to make that happen!
Self publishing well means hiring people to do all of the tasks that would normally be done by a traditional publisher in-house. My expenses over the next few months will include:
- A professional cover designer (Susan Koski Zucker): $1,000
- Proofreading: $900
- Typesetting (which I could do myself, but if I could afford a graphic designer the page layout would look better): $800
- Printing and mailing 300 copies for testimonials and book reviews: $2,400
- Professional formatting of e-book: $200
- Printing business cards with the cover design: $130
- Adding a shopping cart to the book website: $100
- Set up and proofs from print-on-demand publishers Lightening Source and CreateSpace: $260
- A literary attorney to review the manuscript to make sure that I’ve protected myself from any legal issues (a good thing for any memoirist to do, even if they’ve changed the names of people and places, as I have): $950
- Publishers’ indemnity insurance (further legal protection for memoirists): $800
- Postage to mail the manuscript or advance reading copies to experts on Alzheimer’s disease and elder care for fact checking: $200
- 5% fee to Kickstarter (if I reach my goal)
With the help of four editors over four years, I’ve revised Inside the Dementia Epidemic many times. I also work with a consultant, Susan Daffron, President of Logical Expressions, who has self-published 12 books. My book will be about 350 pages as a trade paperback, with an e-book version. It will include a list of resources for family caregivers; endnotes listing the books, articles and scientific studies I refer to; and a comprehensive index. Although Kickstarter does not allow funds raised here to be given directly to a non-profit, I may donate part of the profits from the book itself to a national organization that supports and advocates for family caregivers.
Rewards for Contributing to This Project
To your right you can see the rewards you'll receive if you make a donation to support this project. The most common donation to any project on Kickstarter is $25, but I will appreciate any amount you can afford to give, even if it's just a dollar.
For contributions of $125 and above, I will make, freeze and ship to you overnight express a grape pie--a specialty of the Finger Lakes here in Upstate New York (for contributions from U.S. and Canada only). (When Mom lived in the "memory care" facility, I felt so grateful for the loving care she received there that I baked 32 grape pies for the staff--one for each of them.)
If you help me make my goal, I will be forever grateful to you. And I will blog on Kickstarter to share the project's success with you.
Please help me get Inside the Dementia Epidemic: A Daughter's Memoir out into the world. If I don’t make my goal by the deadline of 11:30 pm on April 7th, Kickstarter will not charge your credit card, you will not get your reward, and I will get nothing. If I make my goal before the deadline, you can still make a donation; Kickstarter will continue to add donations until the very last minute.
Please tell your friends, family and coworkers about this project.
Thank you for your support!
If you want to contact me: firstname.lastname@example.org,
or through the book's website
Have a question? If the info above doesn't help, you can ask the project creator directly.
pledged of $7,000 goal
seconds to go
Funding Unsuccessful This project reached the deadline without achieving its funding goal on April 7, 2012.
Mar 2, 2012 - Apr 7, 2012
Pledge $1 or more
A thank-you email!Estimated delivery: Apr 2012
Pledge $10 or more
A thank you on the book's website!Estimated delivery: Apr 2012
Pledge $25 or more
The e-book (available in multiple versions for any device. including Macs and PCs), and a thank-you on the book's websiteEstimated delivery: Jul 2012
Pledge $50 or more
Your name listed with special thanks in the Acknowledgments section of my book; an autographed copy of my book mailed to you (or the e-book, available in multiple versions for any device, including Macs and PCs--your choice); and a thank-you on the book's websiteEstimated delivery: Sep 2012
Pledge $125 or more
A homemade grape pie frozen and shipped overnight express to you at your convenience (U.S. and Canada only); your name listed with special thanks in the Acknowledgments section of my book; an autographed copy of the book mailed to you (or the e-book, available in multiple versions for any device, including Macs and PCs); and a thank-you on the book's websiteEstimated delivery: Sep 2012
Pledge $225 or more
A homemade grape pie frozen and shipped overnight express to you at your convenience (U.S. and Canada only); 2 autographed copies of the book mailed to you (or 2 e-books, one for you and one for a friend, available in multiple versions for any device, including Macs and PCs); one autographed copy of the book donated in your name and mailed to your local library, Alzheimer’s Association or caregiver support group; your name listed with special thanks in the Acknowledgments section of my book; and a thank-you on the book's website.Estimated delivery: Sep 2012
Pledge $500 or more
TWO homemade grape pies frozen and shipped overnight express to you and a friend at your convenience (U.S. and Canada only); 3 autographed copies of the book mailed to you and 2 friends (or 3 e-books, one for you and two for friends, available in multiple versions for any device, including Macs and PCs); one autographed copy of the book donated in your name and mailed to your local library, Alzheimer’s Association, or caregiver support group; your name listed with special thanks in the Acknowledgments section of my book; and a thank-you on the book's website.Estimated delivery: Sep 2012