• наконец, моему дорогому мужу, детям и внукам. Их постоянная поддержка и любовь помогают мне преодолеть чувство одиночества, свойственное писателю.
Источники
В этом разделе приведен список ресурсов, которые помогут вам обдумать идеи, изложенные в этой книге, и обсудить их с другими. Все эти материалы, фильмы, веб-сайты предназначены для того, чтобы помочь вам обрести надежду и справиться со стрессом и горем, которые деменция вызывает в ваших отношениях.
Предложения для дискуссионных групп и книжных клубов
Используйте маркированный материал в конце каждой главы в качестве руководства для обсуждения. Идеи или вопросы, представленные там, могут быть использованы для нескольких встреч. Действуйте медленно, позвольте себе слушать, говорить, беседовать друг с другом и просто быть вместе.
Если вы сидите дома и вам трудно встречаться с другими людьми лично, подумайте о виртуальном книжном клубе. Изучите сайт www.ambiguousloss.com[14] для получения дополнительной информации.
1. Bayley, J. (1999). Elegy for Iris. New York: Picador.
2. Berman, C. (2005). Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive. New York: Henry Holt.
3. Boss, P. (1999). Ambiguous Loss: Learning to Live with Unresolved Grief. Boston: Harvard University Press.
4. Boss, P. (2002). Family Stress Management: A Contextual Approach (2nd ed.). Thousand Oaks, CA: Sage.
5. Boss, P. (2006). Loss, Trauma, and Resilience: Therapeutic Work with Ambiguous Loss. New York: Norton.
6. Davis, P. (2004). The Long Goodbye. New York: Knopf.
7. Goldman, C. (2002). The Gifts of Caregiving. Minneapolis, MN: Fairview Press.
8. Greutzner, H. (2001). Alzheimer’s: A Caregiver’s Guide and Source Book. Hoboken, NJ: Wiley.
9. Hampl, P. (2007). The Florist’s Daughter. Orlando, FL: Harcourt.
10. Kane, R. L. (2011). The Good Caregiver. New York: Avery.
11. Kushner, H. S. (2004). When Bad Things Happen to Good People. New York: Anchor.
12. Lewis, R. W. (Ed.). Caregiver’s Support Kit. National Caregiving Foundation (1–800–930–1357). Free to caregivers. [1]
13. Mace, N., and Raskins, P. (2006). The 36-Hour Day. Baltimore, MD: Johns Hopkins University Press.
14. Mayo Clinic. (2006) Mayo Clinic Guide to Alzheimer’s Disease. Rochester, MN: Mayo Clinic.
15. McLeod, B. W. (1999). Caregiving: The Spiritual Journey of Love, Loss, and Renewal. Hoboken, NJ: Wiley.
16. Qualls, S. H., and Zarit, S. H. (2009). Aging Families and Caregiving. Hoboken, NJ: Wiley.
17. Rodgers, A. B. (2008). Alzheimer’s Disease: Unraveling the Mystery. Silver Spring, MD: Alzheimer’s Disease Education and Referral Center.
18. Russo, F. (2010). They’re Your Parents, Too! How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy. New York: Bantam.
19. Sheehy, G. (2010). Passages in Caregiving: Turning Chaos into Confidence. New York: HarperCollins.
20. Shenk, D. (2003). The Forgetting: Alzheimer’s: Portrait of an Epidemic. New York: Anchor.
1. Age Old Friends, 1989 (friend has dementia; do I leave him?)
2. Alzheimer’s: What Every African-American Needs to Know (Mayo Clinic, Jacksonville, FL); available at http://alzonline.phhp.ufl.edu/en/videos/124.php, or call 904–953–7103
3. A Song for Martin, 2001 (caregiving); Swedish film with English subtitles
4. Aurora Borealis, 2006 (grandfather with dementia)
5. Away from Her, 2007 (Alzheimer’s disease and husband’s distress)
6. Complaints of a Dutiful Daughter, 1995 (daughter caregiving for mother with Alzheimer’s)
7. Firefly Dreams, 2001 (young caregiver resists and then connects with woman who has Alzheimer’s); Japanese film with English subtitles
8. Iris: A Memoir of Iris Murdoch, 2001 (loving couple and dementia)
9. Is Anybody There? 2009 (friendship of young boy and older man with dementia)
10. The Forgetting: A Portrait of Alzheimer’s, 2008 (PBS series based on the book The Forgetting, by David Shenk)
11. The Notebook, 2004 (love and dementia, also a book)
12. The Savages, 2007 (siblings dealing with parental dementia)
1. Administration on Aging (www.aoa.gov)
2. Alzheimer’s Association (national) (www.alz.org)
3. Alzheimer’s Association Carefinder (www.alz.org/carefinder/index.asp)
4. Alzheimer’s Disease and Educational Referral Center (www.nia.nih.gov/alzheimers)
5. American Association of Retired Persons (AARP) (www.aarp.org)
6. American Psychological Association Family Caregiver Briefcase (www.apa.org/pi/about/publications/ caregivers/index.aspx)
7. Creutzfeldt-Jakob Disease Foundation, Inc. (www.cjdfoundation.org)
8. Dementia Advocacy and Support Network (www.dasninternational.org/index.php)
9. Eldercare Locator (www.eldercare.gov/Eldercare.NET/Public/Index.aspx)
10. Family Caregiving 101 (www.familycaregiving101.org/)
11. Family Caregiver Alliance (www.caregiver.org)
12. Family Caregiving Resources Clearinghouse (http://web.raffa.com/nac/axa/)
13. HBO – the Alzheimer’s Project (www.hbo.com/alzheimers/index.html)
14. Huntington’s Disease Society of America (www.hdsa.org)
15. Levy Body Dementia Association (www.lbda.org)
16. Mayo Clinic (www.MayoClinic.com)
17. National Academy of Elder Law Attorneys (NAELA) (www.naela.org)
18. National Alliance for Caregiving (www.caregiving.org)
19. National Association of Area Agencies on Aging (www.n4a.org/)
20. National Caregivers Library (www.caregiverslibrary.org/)
21. National Family Caregivers Association(www.nfcacares.org)
22. National Institute on Aging (NIA) (www.nih.gov/nia)
Примечания
1. P. Boss, ed., “Special Issue: Ambiguous Loss,” Family Relations 56, no. 2 (April 2007); S. Robins, “Ambiguous Loss in a Non-Western Context: Families of the Disappeared in Postconflict Nepal,” Family Relations 59, no. 3 (July 2010): 253–268.
1. Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures (Chicago: Alzheimer’s Association National Office, 2011), 12. See L. E. Hebert, P. A. Scherr, J. L. Bienias, D. A. Bennett, and D. A. Evans, “Alzheimer’s Disease in the U. S. Population: Prevalence Estimates Using the 200 °Census,” Archives of Neurology 60 (2003): 1119–1122; Alzheimer’s Association, Early-Onset Dementia: A National Challenge, a Future Crisis (Washington, DC: Alzheimer’s Association, June 2006). Available at www.alz.org. [13]
2. Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, 14. See L. E. Hebert, L. A. Beckett, P. A. Scherr, and D. A. Evans, “Annual Incidence of Alzheimer’s Disease in the United States Projected to the Years 2000 Through 2050,” Alzheimer’s Disease and Associated Disorders 15 (2001): 169–173. [14]
3. Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, 14. See Hebert, Beckett, Scherr, and Evans, “Annual Incidence of Alzheimer’s Disease.” [15]
4. Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, 12. See S. Seshadri, P. A. Wolf, A. Beiser, R. Au, K. McNulty, R. White, and R. B. D’Agostino, “Lifetime Risk of Dementia and Alzheimer’s Disease: The Impact of Mortality on Risk Estimates in the Framingham Study,” Neurology 49 (1997): 1498–1504; L. E. Hebert, P. A. Scherr, J. J. McCann, L. A. Beckett, and D. A. Evans, “Is the Risk of Developing Alzheimer’s Disease Greater for Women Than for Men?” American Journal of Epidemiology 153, no. 2 (2001): 132–136. [16]
5. Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, 10.
6. Ibid., 27.
7. Ibid., 25. See 2009 National Alliance for Caregiving/AARP Survey on Caregiving in the United States (Bethesda, MD: National Alliance for Caregiving and Washington, DC: AARP, 2009); data were prepared for the Alzheimer’s Association under contract with Matthew Greenwald and Associates, November 11, 2009. See also MetLife Mature Market Institute, The MetLife Study of Alzheimer’s Disease: The Caregiving Experience (New York: MetLife Mature Market, 2006), www.maturemarketinstitute.com. [17]
8. Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, 25. See in particular Figure 6, “Ages of Alzheimer’s and Other Dementia Caregivers, 2010.” [18]
9. B. Almberg, M. Grafstrom, and B. Winblad, “Caring for a Demented Elderly Person – Burden and Burnout Among Caregiving Relatives,” Journal of Advanced Nursing 25, no. 1 (1977): 109–116; S. H. Zarit, P. A. Todd, and J. M. Zarit, “Subjective Burden of Husbands and Wives as Caregivers: A Longitudinal Study,” Gerontologist 26, no. 3 (1986): doi:10.1093/geront/26.3.260; R. F. Coen, C. A. O’Boyle, D. Coakley, and B. A. Lawlor, “Individual Quality of Life Factors Distinguishing Low-Burden and High-Burden Caregivers of Dementia Patients,” Dementia and Geriatric Cognitive Disorders 13, no. 3 (2002): 164–170.
10. N. L. Mace and P. V. Rabins, The 36-Hour Day (Baltimore, MD: Johns Hopkins University Press, 2006). (Originally published 1981.) [19]
11. Centers for Disease Control and Prevention, “Caregiving for Alzheimer’s Disease or Other Dementia,” November 16, 2009, www.cdc.gov/aging/caregiving/ alzheimer.htm.
12. Mayo Clinic, “Dementia: Causes,” April 17, 2009, www.mayoclinic.com/health/dementia/DS01131/ DSECTION=causes.
1. Ambiguous loss is a term I coined in the 1970s. For references, see www.ambiguousloss.com. For books that summarize the research and application, see P. Boss, Ambiguous Loss: Learning to Live with Unresolved Grief (Cambridge, MA: Harvard University Press, 1999) and P. Boss, Loss, Trauma, and Resilience: Therapeutic Work with Ambiguous Loss (New York: Norton, 2006). For more recent research on various topics of ambiguous loss, see Family Relations 56, no. 2 (April 2007); note especially R. Blieszner, K. A. Roberto, K. L. Wilcox, E. J. Barham, and B. L. Winston, “Dimensions of Ambiguous Loss in Couples Coping with Mild Cognitive Impairment,” 196–209. [20]