2. S. Roos, Chronic Sorrow: A Living Loss (New York: Brunner-Routledge, 2002).
3. C. Feigelson, “Personality Death, Object Loss, and the Uncanny,” International Journal of Psychoanalysis 74, no. 2 (1993): 331–345.
4. R. J. Waldinger and M. S. Schulz, “What’s Love Got to Do with It? Social Functioning, Perceived Health, and Daily Happiness in Married Octogenarians,” Psychology and Aging 25, no. 2 (June 2010): 422–431.
5. R. Schulz and S. Beach, “Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study,” Journal of the American Medical Association 282, no. 3 (December 15, 1999): 2215–2219. See also R. Schulz and L. M. Martire, “Family Caregiving of Persons with Dementia: Prevalence, Health Effects, and Support Strategies,” American Journal of Geriatric Psychiatry 12, no. 3 (May-June 2004): 240–249. [21]
1. American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 4th ed., text revision (Washington, DC: American Psychiatric Association, 2000), 741.
2. Ibid., 737.
3. The New Shorter Oxford English Dictionary, 4th ed., s. v. “Grief.”
4. Ibid., s. v. “Bereavement.”
5. E. Lindemann, “Symptomatology and the Management of Acute Grief,” Journal of Psychiatry 101 (1944): 141–148.
6. M. deVries, “Trauma in Cultural Perspective,” in Traumatic Stress: The Effects of Overwhelming Experience on Mind, Body, and Society, ed. B. A. van der Kolk, A. C. MacFarlane, and L. Weisaeth (New York: Guilford Press, 2007), 404.
7. E. Kubler-Ross, On Death and Dying (New York: MacMillan, 1969).
8. In her second book, On Grief and Grieving (New York: Scribner, 2005), this one based on less research, Kubler-Ross stated that her five stages of grief developed for the dying would also apply to people who are in mourning. [22]
9. M. O’Rourke, “Good Grief,” New Yorker, February 1, 2010, 66.
10. See E. Kubler-Ross, The Wheel of Life (New York: Touchstone, 1997). In this memoir, Kubler-Ross discusses this messiness and her bitterness and defiance. [23]
11. G. A. Bonanno, The Other Side of Sadness (New York: Basic, 2009).
12. D. S. Becvar, In the Presence of Grief: Helping Family Members Resolve Death, Dying, and Bereavement Issues (New York: Guilford Press, 2001); Bonanno, Other Side of Sadness; P. Boss, Ambiguous Loss: Learning to Live with Unresolved Grief (Cambridge, MA: Harvard University Press, 1999); P. Boss, Loss, Trauma, and Resilience: Therapeutic Work with Ambiguous Loss (New York: Norton, 2006); P. Boss, “The Trauma and Complicated Grief of Ambiguous Loss,” Pastoral Psychology 59, no. 2 (2010): 137–145.
13. K. Doka, Disenfranchised Grief: New Directions, Challenges, and Strategies for Practice (Champaign, IL: Research Press, 2002).
1. R. T. Kasuya, P. Polgar-Bailey, and R. Takeuchi, “Caregiver Burden and Burnout: A Guide for Primary Care Physicians,” Postgraduate Medicine 108, no. 7 (December 2000): 119–123. Referenced in L. Etters, D. Goodall, and B. E. Harrison, “Caregiver Burden Among Dementia Patient Caregivers: A Review of the Literature,” Journal of the American Academy of Nurse Practitioners 20, no. 8 (August 2008): 423–428. [24]
2. A. A. Atienza, P. C. Henderson, S. Wilcox, and A. C. King, “Gender Differences in Cardiovascular Response to Dementia Caregiving,” Gerontologist 41, no. 4 (2001): doi:10.1093/geront/41.4.490; C. Donaldson and A. Burns, “Burden of Alzheimer’s Disease: Helping the Patient and Caregiver,” Geriatric Psychiatry and Neurology 12, no. 1 (April 1999): doi: 10.1177/089198879901200106. Both referenced in N. R. Chumbler, J. W. Grimm, M. Cody, and C. Beck, “Gender, Kinship and Caregiver Burden: The Case of Community-Dwelling Memory Impaired Seniors,” International Journal of Geriatric Psychiatry 18, no. 8 (August 2003): 722–732. [25]
3. B. J. Kramer and E. H. Thompson Jr., eds., Men as Caregivers (Amherst, MA: Prometheus Books, 2005).
4. National Alliance for Caregiving and AARP, Caregiving in the U.S. (Bethesda, MD: National Alliance for Caregiving and Washington, DC: AARP, 2004); MetLife Mature Market Institute, The MetLife Study of Sons at Work Balancing Employment and Eldercare (New York: Metropolitan Life Insurance Company, 2003).
5. J. L. Yee and R. Schulz, “Gender Differences in Psychiatric Morbidity Among Family Caregivers: A Review and Analysis,” Gerontologist 40 (2000): 147–164; M. Navaie-Waliser, A. Spriggs, and P. H. Feldman, “Informal Caregiving: Differential Experiences by Gender,” Medical Care 40 (2002): 1249–1259.
6. National Alliance for Caregiving and AARP, Caregiving in the U.S.; L.M.B. Alecxih, S. Zeruld, and B. Olearczyk, Characteristics of Caregivers Based on the Survey of Income and Program Participation (Falls Church, VA: Lewin Group, 2001).
7. Family Caregiver Alliance, Selected Caregiver Statistics, revised 2005, www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=439.
8. N. G. Cuellar, “Comparison of African American and Caucasian American Female Caregivers of Rural, Post-Stroke, Bedbound Older Adults,” Gerontological Nursing 28 (2002): 36–45; W. E. Haley, L. N. Gitlin, S. R. Wisniewski, D. F. Mahoney, D. W. Coon, L. Winter, M. Corcoran, S. Schinfeld, and M. Ory, “Well-Being, Appraisal, and Coping in African-American and Caucasian Dementia Caregivers: Findings from the REACH Study,” Aging and Mental Health 8 (2004): 316–329; M. Pinquart and S. Sorenson, “Ethnic Differences in Stressors, Resources, and Psychological Outcomes of Family Caregiving: A Meta-Analysis,” Gerontologist 45 (2005): 90–106.
9. Pinquart and Sorenson, “Ethnic Differences.”
10. Regarding caregiver burden, Etters and colleagues add that “Self-efficacy behaviors may also influence coping strategies”; Etters et al., “Caregiver Burden,” 424. [26]
11. Etters et al., “Caregiver Burden.”
12. C. W. Sherman and P. Boss, “Spousal Dementia Caregiving in the Context of Late-Life Remarriage,” Dementia: The International Journal of Social Research and Practice 6 (May 2007): 245–270.
13. G. T. Deimling, V. L. Smerglia, and M. L. Schaefer, “The Impact of Family Environment and Decision- Making Satisfaction on Caregiver Depression: A Path Analytic Model,” Aging and Health 13 (2001): doi:10.1177/089826430101300103. Referenced in Etters et al., “Caregiver Burden.” [27]
14. H. Lavretsky, “Stress and Depression in Informal Family Caregivers of Patients with Alzheimer’s Disease,” Aging Health 1, no. 1 (2005): 117–133.
15. P. Dilworth-Anderson, P. Y. Goodwin, and S. W. Williams, “Can Culture Help Explain the Physical Health Effects of Caregiving over Time Among African American Caregivers?” Journal of Gerontology: Social Sciences 59B, no. 3 (2004): S138–S145; P. Dilworth-Anderson, G. Boswell, and M. D. Cohen, “Spiritual and Religious Coping Values and Beliefs Among African American Caregivers: A Qualitative Study,” Applied Gerontology 26, no. 4 (2007): 355–369.
16. Etters et al., “Caregiver Burden.”
17. Ibid.; F. M. Torti, L. P. Gwyther, S. D. Reed, J. Y. Friedman, and K. A. Schulman, “A Multinational Review of Recent Trends and Reports in Dementia Caregiver Burden,” Alzheimer’s Disease and Associated Disorders 18, no. 2 (2004): 99–109.
18. Etters et al., “Caregiver Burden”; Torti et al., “A Multinational Review.”
19. P. Belluck, “In a Land of Aging, Children Counter Alzheimer’s,” The New York Times, November 26, 2010, A1, A12.
20. Faith communities should play an even greater role in sponsoring such support groups. It is important that they are not grief-after-death groups but groups for people like Ruth who must live with ambiguous loss. [28]
1. C. L. Campbell and A. S. Demi, “Adult Children of Fathers Missing in Action (MIA),” Family Relations 49 (2000): 267–276.
2. A. de Saint-Exupéry, The Little Prince (New York: Harcourt Brace Jovanovich, 1971). (Originally published 1943.) Ironically, a year after this book’s publication, the author also went missing as his plane disappeared over the Mediterranean Sea. Life mimicked art. Believe me, The Little Prince is not just a children’s story. If you love someone who has dementia, you’ll find comfort in it. [29]
3. Saint-Exupéry, Little Prince, 82, 84.
4. Ibid., 87.
5. Saint-Exupéry, Little Prince, 8. This phrase appears on several pages. [30]
6. Ibid., 67.
7. F. Perls, Gestalt Therapy Verbatim (Lafayette, CA: Real People Press, 1969). Whereas Perls worked with individuals, Walter Kempler worked with families. Like Whitaker, Kempler was not interested in theory, but rather helped people expand awareness, take responsibility for their actions, and gain a sense of authenticity and autonomy. (The latter would be difficult for caregivers.) See W. Kempler, Experiential Psychotherapy with Families (New York: Brunner/Mazel, 1981). Again like Whitaker, Kempler believed the family was key to individual maturity: H. Goldenberg and I. Goldenberg, Family Therapy: An Overview, 7th ed. (Belmont, CA: Thomson Brooks/Cole, 2008). (Perhaps that depends on one’s definition of family, an idea that these pioneers had not yet considered. In my cotherapy with Carl Whitaker and thus direct observation, I saw that he gave primary emphasis to relationships and process, not simply to family structure.) [31]
8. J. Cassidy, “Mind Games,” New Yorker, September 18, 2006, 30–37.
9. A. P. Turnbull, J. M. Patterson, S. Behr, D. L. Murphy, J. G. Marquis, and M. J. Blue-Banning, eds., Cognitive Coping, Families, and Disability (Baltimore, MD: Brookes, 1993); in that volume, see P. Boss, “Boundary Ambiguity: A Block to Cognitive Coping,” 257–270. [32]
10. Perls, Gestalt Therapy Verbatim, 4.
11. The ongoing sadness of caregivers of adults with dementia may be similar to chronic sorrow, a term traditionally used to describe the long-term reactions of parents who have a child with a disability. See S. Olshansky, “Chronic Sorrow: A Response to Having a Mentally Defective Child,” Social Casework 43 (1962): 190–193; and S. Roos, Chronic Sorrow: A Living Loss (New York: Brunner-Routledge, 2002). [33]