Inside the Dementia Epidemic: A Daughter's Memoir (40 page)

A NEW BEGINNING

  
17
     
The Alzheimer’s Association describes
: Alzheimer’s Association, “Seven Stages of Alzheimer’s,” 2011,
http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp
. © 2012 Alzheimer’s Association. All rights reserved.

  
20
     
In May of 2011 an international
: Lab Tests Online, “Biomarkers Incorporated into Alzheimer’s Disease Diagnostic Criteria,” July 5, 2011,
http://labtestsonline.org/news/biomarkers-incorporated-into-alzheimer-s-disease-diagnostic-criteria/
.

OUR HISTORY

  
51
     
The weight crept back on
: Kathleen Doheny, “Belly Fat in Midlife, Dementia Later? Study Shows Getting a Big Belly in Midlife Ups Risk of Dementia Later in Life,” WebMD Health News, March 26, 2008,
http://www.webmd.com/alzheimers/news/20080326/belly-fat-in-midlife-dementia-later
.

  
51
     
I will learn later that weight loss
: University of South Florida Health, “Unexplained Late-life Weight Loss May Be Early Predictor Of Alzheimer’s Disease,” ScienceDaily, Jun. 11, 2007,
http://www.sciencedaily.com/releases/2007/06/070611092048.htm
.

  
52
     
Although this habit may have been
: The Murray Alzheimer Research and Education Program, University of Waterloo, “Tips and Strategies: An Inspirational Guide for People Like Us with Early-Stage Memory Loss,” 2008,
http://marep.uwaterloo.ca/products/BUFU/93711_tips.strategies.pdf
.

SMALL INDIGNITIES

  
83
     
According to
Forbes.com
: Dan Ackman, “Retirement Doomsday,” Forbes.com, May 4, 2005,
http://www.forbes.com/2005/05/04/cx_da_0504topnews.html
.

ALONE IN A CROWD

  
105
   
I read in the
New York Times
: Kolata, “Old but Not Frail: A Matter of Heart and Head,”
New York Times
, October 5, 2006, sec. A.

LIVING GRIEF

  
186
   
I leaf through a magazine
: Lauren Kessler, “The Life in There: years after her mother died of Alzheimer’s, Lauren Kessler was still terrified of the disease. And so she decided to meet her fear head-on—by taking an entry-level job at an Alzheimer’s facility. First came the shock. Then, amazingly, the awe. What she learned will change the way you think about the diagnosis we all dread.”
O, The Oprah Magazine,
June 2007: 187+.

RECKONING

  
211
   
In 2007 in New York State
: Community Health Advocates, “Section 5A: Medicaid in NY,” June 2007,
http://www.communityhealthadvocates.org/advocates-guide/medicaid-managed-care/medicaid-in-new-york#howspenddownworks
.

  
211
   
In 2011 the national average
: MetLife Mature Market Institute, “Market Survey of Long-Term Care Costs: The 2011 MetLife Market Survey of Nursing Home, Assisted Living, Adult Day Services, and Home Care Costs,” October 2011, 7-9,
http://www.metlife.com/assets/cao/mmi/publications/studies/2011/mmi-market-survey-nursing-home-assisted-living-adult-day-services-costs.pdf

SHARP AND SWEET

  
221
   
Her departure reminds me again
: Lauren Kessler,
Dancing with Rose: Finding Life in the Land of Alzheimer’s
(New York: Viking Penguin, 2007), 256.

FINANCIAL DISASTER

  
225
   
She will soon qualify for Medicaid
: Evelyn Frank Legal Resources Program of Selfhelp Community Services, Inc., “Medicaid Spend-Down,” New York Health Access, June 1, 2009,
http://wnylc.com/health/entry/46/
.

WHAT IF’S

  
229
   
A few weeks later I read
: Jane E. Brody, “Putting Muscle Behind End-of-Life Issues,”
New York Times
, Feb. 23, 2009, D7.

HONESTY

  
238
   
In her book
Forget Memory
: Anne Davis Basting,
Forget Memory: Creating Better Lives for People with Dementia
(Baltimore: The Johns Hopkins University Press, 2009), 28. Reprinted with permission of The Johns Hopkins University Press.

  
239
   
In
Learning to Speak Alzheimer’s
: Joanne Koenig Coste,
Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease
(New York: First Mariner Books, 2004), 77.

  
239
   
John Zeisel writes in his book
: John Zeisel,
I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s
(New York: Avery Trade, 2009), 157-8.

ANOTHER SEARCH FOR HOME

  
244
   
Its fundamental tenet is that
: William H. Thomas, M.D.,
Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home
(Acton, MA: VanderWyk & Burnham, 1996), 7-23. Reprinted with permission of VanderWyk & Burnham, an imprint of Quick Publishing, LC, 888-PUBLISH, fax 314-993-4485, email
[email protected]
.

  
246
   
According to Dr. Thomas, its founder
: Thomas, quoted in Camille Peri, “Talking with Bill Thomas: Reimagining Nursing Homes: The doctor who wants to revolutionize nursing homes talks about why old age should be a time of growth, not decline, and how we can make that happen,”
Caring.com
, July 18, 2008,
http://www.caring.com/interviews/interview-with-bill-thomas-about-pulling-the-plug-on-nursing-homes
. ©Copyright 2008-2012,
Caring.com
. All Rights Reserved.

  
246
   
Their website explains that
: THE GREEN HOUSE
^®
Project, “Learn About Us,”
http://thegreenhouseproject.org/about-us/
.

  
247
   
To change the culture of elder care
: NCB Capital Impact, “THE GREEN HOUSE
^®
Frequently Asked Questions,”
http://www.ncbcapitalimpact.org/defaultaspx?id=508#GHcul
turechange.

  
247
   
According to the blogstream Changing Aging
: Kavan Peterson, “The Green House Project Featured in USA Today, Plus New Consumer Toolkit,” ChangingAging Blogstream, April 1, 2011,
http://changingaging.org/blog/2011/04/01/the-green-house-project-featured-in-usa-today-plus-new-consumer-toolkit/
.

  
247
   
Instead of working all day
: St. John’s Home, “THE GREEN HOUSE
^®
Project: St. John’s Green House
^®
Project: Transforming Elder Services in New York,” 2011,
http://www.stjohnshome.com/green-house-project
.

  
247
   
According to the Green House Project
: THE GREEN HOUSE
^®
Project, “Consumer Tool Kit,” 16.

  
248
   
With the financial support
: THE GREEN HOUSE
^®
Project, “RWJF Announce $10 Million Expand Green House Access to Low-Income Elders,” Sept. 8, 2011,
http://thegreenhouseproject.com/rwjf-announce-10-million-expand-green-house-access-to-low-income-elders/
.

  
248
   
By September 2011 there will be
: THE GREEN HOUSE
^®
Project, “Evaluating THE GREEN HOUSE
^®
Model,” p.1,
http://thegreenhouseproject.org/wp-content/uploads/2011/10/green_house_research-1-pager-with-map_September-2011.pdf
.

  
248
   
According to the developer of one
: St. John’s Home.

  
248
   
Care can be paid for by
: THE GREEN HOUSE
^®
Project, “Consumer Tool Kit,” p.3,
http://thegreenhouseproject.org/wp-content/uploads/2011/04/The-Green-House-Project_Consumer-Toolkit_rev3.pdf
.

  
248
   
An average of fifty percent
: Kavan Peterson, “Live Grow Thrive: Green House Model Promotes Growth,” ChangingAging Blogstream, Jan. 11, 2011,
http://changingaging.org/blog/2011/0111/live-grow-thrive-green-house-model-promotes-growth/
.

  
248
   
The AARP calls the project
: THE GREEN HOUSE
^®
Project, “RWJF Announce $10 Million Expand Green House Access to Low-Income Elders.”

  
249
   
In his book
What Are Old People For?
: William H. Thomas, M.D.,
What Are Old People For? How Elders Will Save the World
(Acton, MA: VanderWyk & Burnham, 2004), 234-235.

  
249
   
Doctors, social workers, and physical
: Peterson, “Live Grow Thrive.”

FOUR KINDS OF PAIN

  
254
   
I learn later that when
: Jean Carper,
100 Simple Things You Can Do to Prevent Alzheimer’s and Age-Related Memory Loss
(New York: Little, Brown and Company, 2010), 26-28.

REBOUND

  
256
   
In Barbara Ehrenreich’s book
Bright-Sided
: Barbara Ehrenreich,
Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America
(New York: Metropolitan Books, 2009), 9-44.

SMALL PLEASURES

  
264
   
Dr. G. Allen Power, author
: G. Allen Power, M.D., Plenary Presentation. “Dementia Beyond Drugs: Changing the Culture of Care,”
Ithaca College Gerontology Institute 2010 Annual Conference: Dignity, Compassion, and Choice: New Approaches to Geriatric Care
, Campus Center, Ithaca College, Ithaca, New York, Sept. 30, 2010.

IS IT ALZHEIMER’S, OR NOT?

  
274
   
According to the collection of essays
: John. Q. Trojanowski, M.D., Ph.D., Foreword, in
What If It’s Not Alzheimer’s?: A Caregiver’s Guide to Dementia
, Lisa Radin and Gary Radin, eds. (Amherst, New York: Prometheus Books, 2008), 15.

  
275
   
In one of the essays in
: Murray Grossman, “What Is Frontotemporal Dementia? A Clinical Perspective,” in Radin and Radin, 46.

  
276
   
As Katherine P. Rankin points
: Katherine P. Rankin, “Altered Relationships: Adapting to Emotions and Behavior,” in Radin and Radin, 219.

  
276
   
On the other hand, when I read
: Rachel Hadas,
Strange Relation: A Memoir of Marriage, Dementia, and Poetry
(Philadelphia: Paul Dry Books, 2011), xi,119.

AFTERWORD

  
283
   
Indeed, I’d follow the advice of
: Nataly Rubinstein,
Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide
(Minneapolis, MN: Two Harbors Press, 2011), 56-63.

APPENDIX A: IS THERE A TEST TO DIAGNOSE ALZHEIMER’S DISEASE?

  
289
   
According to Dr. Frank Longo
: Frank Longo, MD, PhD, “The Coming Epidemic of Dementia and How It Can Be Diagnosed, Treated, and Prevented,” Stanford School of Medicine, Stanford, CA, address, May 2012,
http://scopeblog.stanford.edu/2012/05/31/stanford-neuroscientist-discusses-the-coming-dementia-epidemic/
.

  
290
   
The Alzheimer’s Association reserves
: “Alzheimer’s Association Statement on Florbetapir PET Amyloid Imaging,” Alzheimer News, Jan. 21, 2011,
http://www.alz.org/news_and_events_pet_amyloid_imaging.asp
©2012 Alzheimer’s Association, all rights reserved.

  
290
   
A spinal fluid test has been
: Jenny Marder, “Spinal Fluid Test a New Tool for Diagnosing Alzheimer’s Disease,”
PBS Newshour
, August 10, 2010,
http://www.pbs.org/newshour/rundown/2010/08/doctors-may-be-able-to.html
.

  
290
   
Many doctors and researchers
: Gina Kolata, “In Spinal Fluid Test, an Early Warning on Alzheimer’s,”
New York Times
, August 8, 2010,
http://www.nytimes.com/2010/08/10/health/research/10spinal.html
.

  
290
   
In May of 2011, an international
: Lab Tests Online, “Biomarkers Incorporated into Alzheimer’s Disease Diagnostic Criteria,” July 5, 2011,
http://labtestsonline.org/news/biomarkers-incorporated-into-alzheimer-s-disease-diagnostic-criteria/
.