Inside the Dementia Epidemic: A Daughter's Memoir (42 page)

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Authors: Martha Stettinius

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BOOK: Inside the Dementia Epidemic: A Daughter's Memoir

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311

Many doctors—including my mother’s
: Alzheimer’s Association, “International Survey Reveals Attitudes Towards Alzheimer’s Diagnosis and Treatment,” Alzheimer’s Association International Conference press release, Paris, July 20, 2011,
http://alz.org/aaic/wednesday_1230amCT_news_release_intl_survey.asp
.

312

In their 2011 report
Alzheimer’s Disease
: Alzheimer’s Association, “2011 Alzheimer’s Disease Facts and Figures,” 47,
http://www.alz.org/downloads/Facts_Figures_2011.pdf
. ©2012 Alzheimer’s Association, all rights reserved.

APPENDIX H: PLANNING FOR LONG-TERM CARE

313

In March of 2010
: Paula Span, “The New Old Age: Behind the Class Act, a Numbers Game,”
New York Times
, Sept. 18, 2011,
http://newoldage.blogs.nytimes.com/2011/10/18/behind-the-class-act-a-numbers-game/

313

By the fall of 2011, though
: Gardiner Harris and Robert Pear, “Still No Relief in Sight for Long-Term Needs,”
New York Times
, Oct. 25, 2011, Sec. D, 1,6.

314

If CLASS had existed successfully
: Paula Span, “The New Old Age: Details on the Class Act,”
New York Times
, April 29, 2010,
http://newoldage.blogs.nytimes.com/2010/04/29/details-on-the-class-act/
.

314

This amount would have been
: Long Term Care Partners, “The Federal Long Term Care Insurance Program: Frequently Asked Questions,”
http://www.ltcfeds.com/help/faq/basics.html
.

314

According to the Family Caregiver
: Family Caregiver Alliance, “What Is Long-Term Care?”
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=440
.

315

If CLASS had existed years ago
: The Henry J. Kaiser Foundation, “Health Care Reform and the CLASS Act,” April 2012, 2,
http://www.kff.org/healthreform/upload/8069.pdf
.

315

According to Howard Gleckman
: Howard Gleckman,
Caring for Our Parents: Inspiring Stories of Families Seeking New Solutions to America’s Most Urgent Health Crisis
(New York: St. Martin’s Press, 2009), 177.

316

The average annual premium
: American Health Care Association, National Center for Assisted Living, “Financial Information: Understanding Long Term Care Insurance,” 3,
http://www.longtermcareliving.com/pdf/ltc_insurance.pdf
.

316

Private long-term care insurance
: Gleckman, 34-246.

APPENDIX I: LONG-TERM CARE AN INTENTIONAL COMMUNITY

318

He says that “people will only
: Charles Durrett,
Senior Cohousing: A Community Approach to Independent Living
(Berkeley: McCamant/Durett, 2005), 123,184.

319

Durrett describes how some
: Ibid., 123-24.

APPENDIX J: CONFRONTING THE EPIDEMIC AT THE NATIONAL LEVEL AND BEYOND

320

According to the Alzheimer’s Association
: Alzheimer’s Association press release, “Alzheimer’s Breakthrough Act: Alzheimer’s Association Statement,” Washington, D.C., July 23, 2009,
http://www.alz.org/national/documents/statements_breakthroughact.pdf
.

320

In their May 2011 report
: Susan Peschin,
Penny Wise, Pound Foolish: Fairness and Funding at the National Institute on Aging
, Alzheimer’s Foundation of America, May 2011,
http://www.alzfdn.org/documents/NIA%20Report-Final.pdf
, 3-4.

320

The AFA quotes Sam Gandy
: Sam Gandy, M.D., Ph.D., quoted in Alzheimer’s Foundation of America,
Penny Wise, Pound Foolish
, 9.

321

The National Plan to Address
: U.S. Department of Health and Human Services, National Plan to Address Alzheimer’s Disease, May 15, 2012,
http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf
.

322

Currently, individual states may
: Stimson, Sandra, CALA ADC AC-BC CDP CDCM, Founder and Executive Director, National Council of Certified Dementia Practitioners, personal communication, June 19, 2012.

323

According to the Alzheimer’s Association
: Alzheimer’s Association, “The Hope for Alzheimer’s Act,” 2010,
http://www.kintera.org/site/pp.asp?c=mmKXLbP8E&b=6301189
. ©2012 Alzheimer’s Association, all rights reserved.

324

A second pending piece of legislation
: Congress, House, Alzheimer’s Breakthrough Act of 2011, 112
^thCongress, 1
^stsess., HR 1897, May 13, 2011, 1,
http://www.kintera.org/atf/cf/%7BB96E2E84-AF7D-4656-9C86-285306F00E19%7D/HR%201897%20%28GPO%205-30%29.pdf
.

324

When I compared the original text
: Govtrack.us, “Text of S. 1492 [111th]: Alzheimer’s Breakthrough Act of 2009,”
http://www.govtrack.us/congress/billtext.xpd?bill=s111-1492
.

324

the 2011 version has back-pedaled
: Congress, House, Alzheimer’s Breakthrough Act of 2011, 8.

325

The AFA also supports
: Alzheimer’s Foundation of America,
No Time to Waste: Recommendations for an Integrated National Plan to Overcome Alzheimer’s Disease
, Oct. 2011, 8-9,
http://aspe.hhs.gov/daltcp/napa/cmtach17.pdf
.

325

In his introduction to this report
: Harry Johns, Introduction,
Alzheimer’s from the Frontlines: Challenges a National Alzheimer’s Plan Must Address
, Alzheimer’s Association, 2011, 3. ©2012 Alzheimer’s Association, all rights reserved.

Acknowledgments

T
his is my favorite part—thanking the many people who’ve cheered me on. Without their support I doubt I could have worked on this project for seven years.

Since I have changed the names and descriptions of most of the people and places in this book, I cannot use full names here for the people who live in my city. I wish I could. If you are one of those local folks, forgive me.

Laura Shaine Cunningham, the Artistic Director of the Memoir Institute, helped me shape the manuscript into the book it is today, and I cannot thank her enough. Every new author should be as lucky as I was to meet Laura at the Omega Institute’s Memoir Festival and to build the kind of working relationship that we enjoy. I will be forever grateful for her insight, editing skills and unwavering support of this project.

Kathryn Craft, the owner of
Writing-Partner.com
, read an early draft in 2008 and wrote a brilliant, twelve-page evaluation of the manuscript. I also want to thank Jerry Waxler of the Memory Writers Network, for teleclasses he offered through the National Association of Memoir Writers on the craft of writing memoir, and for his thoughtful evaluation and editing of an early draft. Kathryn and Jerry’s suggestions guided me through my first major revision of the manuscript. In 2012 Kathryn read the manuscript again, and I am indebted to her for her clear thinking and incisive edits.

When I took Professor Katy G.’s class “The Art of the Personal Essay” back in 2005 as an employee of a local university, she encouraged me to turn my writing on caregiving into the chapters of a book. Without her early faith in me I may never have considered the idea. I thank her for this early encouragement, and for reading and commenting on two drafts.

Many thanks to Meg D., Carol H., Rachael S., Aileen F., Laura B. and Linda V. for reading an early version and offering suggestions, and to Meg. D., Joyce C., Suzanne K., Sara K., and Laura B. for reading and commenting on a later draft. Many thanks also to Judy E. for applying her stellar proofreading skills to the final draft.

Thank you to Lucy Whitman, Marc Wortmann, Viki Kind, Sandra Stimson, Cindy Keith, Sharon K. Brothers, Nataly Rubinstein, and Joyce Simard for reviewing the advance copy and offering their suggestions.

Through their work as life coaches, Meg D. and Jaya helped me to stay motivated to sit my bottom in a chair each day and write, even when the goal of a finished book seemed absolutely impossible.

Another professional editor, Mickey P., evaluated an early draft, and I want to thank her for pointing out its flaws; over time I was able to appreciate her directness, and, I hope, to make the necessary revisions.

Over several years I wrote many scenes in this book sitting at Ellen S.’s dining room table in her weekly writing group. I will always appreciate her gentle comments and editing suggestions, and her ongoing support. I also thank Irene Z. and her women’s writing group for providing another safe place to explore my feelings about caregiving and my family history.

Barbara V., my boss for several years during the course of this story, always believed in “family first” and allowed me to take time off to attend to my mother’s medical emergencies. Barbara also supported my request to work from home to give me more time to write. A former community college president, and an English major as an undergraduate, she believed in the importance of using writing to “bear witness” to injustice and suffering; social change, she would say, often begins with story.

Lee R., a coworker who lost her own mother to Alzheimer’s disease, has always been generous with her empathy and emotional support.

Susan Daffron and James Byrd of Logical Expressions, who have self-published twelve books, have guided me through the publishing process. I also thank the other members of their Author’s Circle for their inspiration and practical suggestions.

Wayne G., a neighbor and fellow writer, promised several years ago to always ask me how my book was going. He followed through, year after year, always with an encouraging smile.

Many thanks to all of Mom’s “angels” who have brightened her days—the staff in her facilities, plus Laura G., Suzanne K. and Terry M.

My mother, Judy, has always been my most steadfast cheerleader. She told me years ago that she felt certain that I would end up writing a book of some sort. If she happened to be in it, she said, she asked only that I be “kind” to my “old Mom.” I hope that I’ve honored her wish.

I thank my family—my dear husband Ben, son Andrew and daughter Morgan—for their patience with my new job of writing. I especially thank Morgan, who, at age 10, told me early on in the project that a book about taking care of Grammy was a good idea because “it will help other people in your situation know that they are not alone.”

Index
A

AARP,
248

Accera,
307

accusations,
see
paranoia

activities,
14
,
29
,
35
,
38-39
,
41
,
60
,
88
,
103
,
105
,
134
,
172
,
199
,
207-208
,
212
,
227-228
,
245
,
296