The writing on the wall... Alzheimer's disease: A daughter's look at mom's faithful care of dad

Journal of Religion, Disability and Health

Volumn 9, Issue 2, 2005, Pages 49-74

  Iozzio, M J ^a  

^a BARRY UNIVERSITY   (United States)

Author keywords

Alzheimer's disease; Healthcare; Interdependence; Justice; Theological anthropology; Virtue

Indexed keywords

EID: 33749137989     PISSN: 15228967     EISSN: 15229122     Source Type: Journal    
DOI: 10.1300/J095v09n02_05     Document Type: Article

References (72)

1. The American Heritage dictionary (1994), s.v., "dignity."
2. I am thinking here of Attention Deficit and Hyperactive Disorders, developmental disabilities, and various degrees of paraplegia.
3. For example, it is just as likely that a husband will assume the responsibilities of care, including bathing, feeding, and toileting, for his wife or a father for his child. See L. E. Herbert et al., "Is the risk of developing Alzheimer's Disease greater for women than for men?" The American Journal for Epidemiology 153 (2001) 132-136.
4. Stephen Post argues two essential moral challenges of AD. "First, it requires that we overcome the stigma associated with dementia, principally by being with deeply forgetful persons in attentively caring ways that draw upon their remaining emotional, relational, and creative capacities. Second, it requires that we think carefully about ethical issues arising over the progression of disease and, in particular, that we avoid burdening these persons with invasive medical treatment that, because they lack insight into the purposes of such treatments, constitutes an assault." Stephen G. Post, The Moral Challenge of Alzheimer's Disease, 2nd ed. (Baltimore: Johns Hopkins University, 2000) 3.
5. See Albert R. Jonsen and Stephen Toulmin, The Abuse of Casuistry (Berkeley: University of California, 1988)
6. and James F. Keenan, SJ, and Thomas A. Shannon, Ed., The Context of Casuistry (Washington, DC: Georgetown University, 1995).
7. On these virtues see James F. Keenan, SJ, "Proposing Cardinal Virtues," Theological Studies 56 (1995) 709-729. Further, recall that habits or particular ways of acting become virtues only when they are infused with the right reasoning of prudence (see Thomas Aquinas Summa theologiae 1.2. 55.4).
8. I will argue that these doctrinal truths lend themselves to an elaboration of the interdependence indicative of the all human relationships.
9. Among other critiques of liberalism, see David Fergusson, Community, Liberalism and Christian Ethics (New York: Cambridge University, 1998);
10. Joseph J. Kotva, Jr., A Christian Case for Virtue Ethics (Washington, DC: Georgetown University, 1996);
11. Alasdair MacIntyre, After Virtue, 2nd ed. (Notre Dame: University of Notre Dame 1984).
12. The Catechism of the Catholic Church likewise recognizes this interdependence. "Nothing exists that does not owe its existence to God the Creator" (no. 338) and "Creatures exist only in dependence on each other, to complete each other, in the service of each other" (no. 340). Catechism of the Catholic Church (henceforth CCC , (New York: Paulist Press, USCC, Inc.-Libreria Editrice Vaticana translation, 1994).
13. Catherine Mowry LaCugna and Michael Downey, "Trinitarian Spirituality" in M. Downey, ed., The New Dictionary of Catholic Spirituality (Collegeville: Liturgical, 1993) 980.
14. Consider the dearth of texts or articles attending seriously to what the doctrine of the Trinity may have to say to moralists.
15. See CCC no.s 249-256.
16. Aquinas, Summa theologiae 1. 29.4c, 36.2c. Further, "The structural comparison between De Deo uno and De Deo trino [ST 1, 2-26 and 27-43 respectively] indicates that in De Deo uno Aquinas worked out that the nature of God is to be To-Be. In De Deo trino he shows that the To-Be of God is To-Be-Related." Catherine Mowry LaCugna, God For Us: The Trinity & Christian Life (New York: HarperCollins, 1991) 152-153.
17. Aquinas, ST 1. 28.1c, 3c.
18. Aquinas, ST 1. 28.4c.
19. "The Church uses (I) the term "substance" (rendered also at times by "essence" or "nature") to designate the divine being in its unity, (II) the term "person" or "hypostasis" to designate the Father, Son, and Holy Spirit in the real distinction among them, and (III) the term "relation" to designate the fact that their distinction lies in the relationship of each to the others." CCC no. 252.
20. Aquinas, ST 1. 29.4c.
21. Aquinas, ST 1. 32.2c.
22. CCC no. 238-248. LaCugna also argues that, "The economy is 'proof' that God is not being-by-itself but being-with-us. The sphere of God's being-in-relation is the economy of creation and redemption in which the totality of God's life is given. We have no direct or immediate access to God's being in-itself or by-itself... the divine essence is indeed revealed, given, bestowed in Christ, but what is given is not an impersonal nature, an 'in-itself', but the highest, most perfect realization of personhood and communion: Being-for-another and from-another, or, love itself." LaCugna, God For Us 246.
23. "The God who is thrice personal signifies that the very essence of God is to be in relation, and thus relatedness rather than the solitary ego is the heart of all reality" (emphasis mine). Elizabeth A. Johnson, She Who Is: The Mystery of God in Feminist Theological Discourse (New York: Crossroad, 1992) 215-216.
24. Not a one of us has achieved what appears and is commonly referred to as independence without having been first dependent (and radically so) on others.
25. "Aquinas crystallizes this development [of relationality] with his definition of persons as "subsistent relations." This means that the persons are persons precisely as mutual relations and not as anything else apart from their mutual bonding. Relationality is the principle that at once constitutes each trinitarian person as unique and distinguishes one from another. It is only by their reciprocal and mutually exclusive relationships that the divine persons are really distinct from each other at all. Their uniqueness arises only from their esse ad, from their being toward the others in relation." Johnson, She Who Is 216.
26. Aquinas, ST 1. 79.2 and 93.5.
27. "Furthermore, this [Trinitarian symbol for God] indicates that the particular kind of relatedness than which nothing greater can be conceived is not one of hierarchy involving domination/subordination, but rather one of genuine mutuality in which there is radical equality while distinctions are respected." Johnson, She Who Is 216.
28. Aquinas, ST 1. 76. 1c, 5c and 91.3c.
29. Aquinas, ST 1.2. 94.2c.
30. "The trinitarian God, moreover, cannot be spoken about without reference to divine outpouring of compassionate, liberating love in the historical world of beauty, sin, and suffering, thus leading us to envision a God who empowers human praxis in these same directions." Johnson, She Who Is 216.
31. Aquinas, ST 1.2. 3.8c and 109.5c.
32. See Stephen J. Duffy, "Friar Thomas D'Aquino: Grace Perfecting Nature" in his The Dynamics of Grace: Perspectives in Theological Anthropology (Collegeville: Liturgical, 1993) 149-156.
33. See Martha B. Holstein, "Ethics and Alzheimer's Disease: Widening the Lens," Journal of Clinical Ethics 9 (1998) 13-22.
34. See Nancy L. Mace and Peter V. Rabins, The 36-Hour Day, rev. ed. (Baltimore: Johns Hopkins University, 2001),
35. "Chapter 2: Getting Medical Help for the Impaired Person;" and Time, July 17, 2000: 51-57.
36. 20 million people worldwide, 4 million in the US, are suspected of having AD. Time, July 17, 2000: 51.
37. Since writing this article, and subsequent to its review for this journal, my father's diagnosis has been confirmed. AD medications have been withdrawn, leaving him only with a regulating dose of insulin and a drug to control his Parkinson's tremor. Further, with the advance of kidney failure and the decision to not initiate dialysis, my father now receives the additional support of hospice home health care.
38. Aquinas, ST 1.2. 9 and 10. See also James F. Keenan, SJ, Goodness and Rightness in Thomas Aquinas's Summa Theologiae (Washington, DC: Georgetown, 1992) especially chapter 3.
39. Consider the questions of competency and/or the determination of personhood based on "intelligence quotients" and the like. See, for example, Allen Buchanan and Dan Brock, "Competence and Incompetence," Millbank Quarterly 64 (1986) 67-80 and
40. John D. Arras, "The Severely Demented, Minimally Functional Patient: An Ethical Analysis," Journal of the American Geriatrics Society 36 (1988) 938-944 (both reprinted in John D. Arras and Bonnie Steinbock, ed., Ethical Issues in Modern Medicine (Mountain View: Mayfield, 1999);
41. and Joseph Fletcher, "Four Indicators of Humanhood-The Enquiry Matters," The Hastings Center Report 4 (December 1975) 4-7.
42. "Individuals with dementia have residual strengths. Building on these strengths will improve their functioning and quality of life." Post, The Moral Challenge of Alzheimer's Disease 15.
43. See Post, The Moral Challenge of Alzheimer's Disease, chapter 3, "Fairhill Guidelines on Ethics and the Care of People with Alzheimer Disease" and chapter 5, "The Humane Goal: Enhancing the Well-being of Persons with Dementia."
44. At this juncture a discussion on suffering and care would be helpful; however, the parameters of this article prevent exploration. Along the lines of thought on interdependence, mortality, and caring see Henri J. M. Nouwen, Our Greatest Gift: A Meditation on Dying and Caring (New York: HarperCollins, 1994).
45. This article focuses only on these virtues as they may be sustained and developed by those who are for and about persons with dementia; I do not mean to suggest, however, that persons with dementia cannot sustain or develop virtue.
46. From William Bennett, The Book of Virtues (New York: Simon & Schuster, 1993) to Stanley Hauerwas and Charles Pinches, Christians Among the Virtues (Notre Dame: University of Notre Dame, 1997), among many others.
47. Although according to a principle-based ethics my father would be deemed incompetent and lacking autonomy, he definitely has considerable control over himself. He remains quite stubborn or quite submissive when he sees it to be to his advantage. Additionally, he inserts himself often into conversations, sometimes appropriately, sometimes inappropriately-or so it seems to us. Nevertheless, these insertions remind us that he is still an important part and an important member of our family.
48. See James F. Keenan, SJ, Virtues for Ordinary Christians (Kansas City: Sheed & Ward, 1996), chapter 11, "Self-Esteem."
49. Although for all intents and purposes my father now lacks a distinct sense of self, he is still my father. As such, he is still owed by me the respect due to him as father and by others the respect due to him as a human being. On these same lines, see Stanley Hauerwas, "Must a Patient be a Person to be a Patient? Or, My Uncle Charlie is not much of a Person but he is still my Uncle Charlie," reprinted in Stephen Lammers and Allen Verhey, ed., On Moral Medicine, 2nd ed. (Grand Rapids: Eerdmans, 1998) 387-390.
50. Mary Lucy Chidiac married Francis Anthony Iozzio, May 1, 1949.
51. David Keck devotes much of his text to memory, hope and reconciliation. "[Caregivers] find themselves charged both with remembering another person and with remembering for another person. Their daily experience with someone else's diminishing cognitive faculties heightens their sense of trying to remember the patient. However world-historical or simple, the particular experiences shared with a patient become absolutely precious. At the same time, caregivers recognize that they must do the remembering." David Keck, Forgetting Whose We Are: Alzheimer's Disease and the Love of God (Nashville: Abingdon, 1996) 207.
52. By abandonment here I do not mean to suggest in any way residence in a specialized facility. The time may come when my mother will no longer be able to care effectively for him and for herself, and that my father will need to be moved from their home to such a facility. I suspect that my mother would visit him everyday.
53. This paraphrase is derived from Aquinas', and Augustine's, definition of virtue; ST 1.2. 55, 4c.
54. Thomas Aquinas, Commentary on Aristotle's Nicomachean Ethics, Book Four, Lecture XVI, "Amusement," trans. C.I. Litzinger, OP (Notre Dame: Dumb Ox Books, 1994), no. 851; see also ST 2.2. 168.2c.
55. For an extended discussion on humor, see Robert C. Roberts, "Sense of Humor as a Christian Virtue," Faith and Philosophy 7 (1990) 177-192.
56. See Keenan, Virtues for Ordinary Christians, chapter 20, "Humor."
57. When Aquinas, commenting on Aristotle, considers friendship in adversity he recognizes that "extraneous pleasure lightens sorrow." Aquinas, Commentary on Aristotle's Nicomachean Ethics, Book Nine, Lecture XIII, "Friends Needed in Both Prosperity and Adversity," no. 1931.
58. See also Stephen Sapp, When Alzheimer's Disease Strikes (Palm Beach, FL: Desert Ministries, Inc., 1996) 22-24.
59. Disability studies critiques this dualist prejudice against defects of the mind as much as it challenges a dualist rejection of uncontrolled bodies. See Leonard J. Davis, ed., The Disability Studies Reader (NY: Routledge, 1997).
60. See Elaine Brody, Women in the Middle: Their Parent-Care Years (New York: Springer, 1990);
61. Post, The Moral Challenge of Alzheimer's Disease, chapter 2, "The Family Caregiver: Partnership in Hope";
62. and more recently, Martha Holstein, "Home Care, Women, and Aging: A Case Study of Injustice" in Margaret Urban Walker, ed., Mother Time: women, aging, and ethics (Lanham: Rowman & Littlefield, 1999).
63. As Marilyn Martone has recognized, the financial costs of long-term care, whether acute, sub-acute or extended care, require either a declaration of indigence or great personal wealth. See Marilyn Martone, "Making Health Care Decisions without a Prognosis: Life in a Brain Trauma Unit," The Annual of the Society of Christian Ethics 20 (2000) 309-327.
64. See Christine Firer Hinze, "Dirt and Economic Inequality: A Christian-Ethical Peek Under the Rug," The Annual of the Society of Christian Ethics 21 (2001) 45-62.
65. In her high heels, matching pearl earrings and necklace, June Cleaver most informal caregivers are not; more than likely, they are Cinderellas, with neither prospects of a princely ball to attend nor hope for another's help for any extended period of time.
66. Holstein, "Home Care" 227.
67. ... and thus suspect from the feminist critique of its control over a woman's place. See Emily Abel, Who Cares for the Elderly? Public Policy and the Experience of Adult Daughters (Philadelphia: Temple University 1991), "Representations of Caregiving."
68. Up to three-quarters of formal and informal home caregivers are women. Certainly husbands and sons do contribute to the care of their spouses/ parents; however, men are more likely than women to pay a home care worker. Paid in-home service suggests also the long history of economic advantage men have enjoyed at the expense of their mothers' and wives' at-home or low-income work. See Holstein, "Home Care" 230-235.
69. As of 2002, the last year for which complete statistics are available, the average hourly wage of home health aides was $6.72; by November 2003, average wage increased to $7.23 (http://www.bls.gov/oes/current/oes399021.htm#nat). In particular, note the "Job Outlook" section of the US Department of Labor Bureau of Labor Statistics for home care providers: "Excellent job opportunities are expected for this occupation, as rapid employment growth and high replacement needs produce a large number of job openings. Employment of personal and home care aides is projected to grow much faster than the average for all occupations [in this broad service personnel category] through the year 2012. The number of elderly people, an age group characterized by mounting health problems and requiring some assistance, is projected to rise substantially. In addition to the elderly, however, patients in other age groups will increasingly rely on home care, a trend that reflects several developments, including efforts to contain costs by moving patients out of hospitals and nursing carefacilities as quickly as possible, the realization that treatment can be more effective in familiar rather than clinical surroundings, and the development and improvement of medical technologies for in-home treatment. In addition to job openings created by the increase in demand for these workers, replacement needs are expected to produce numerous openings. The relatively low skill requirements, low pay, and high emotional demands of the work result in high replacement needs. For these same reasons, many people are reluctant to seek jobs in the occupation. Therefore, persons who are interested in and suited for this work-particularly those with experience or training as personal care, home health, or nursing aides-should have excellent job opportunities." United States Department of Labor, Bureau of Labor Statistics, "Personal and Home Care Aides," http://www.bls.gov/oco/content/ocos173.stm; accessed January 17, 2005, emphasis added.
70. As of this writing, the availability of many of these services is in jeopardy. State and county support for elders has been reduced drastically. My mother has since secured the services of an elder-care lawyer, who has begun to recommend changes to their joint assets.
71. See Mace and Rabins, The 36-Hour Day, chapters 3, 7, and 8: "Characteristic Problems of Dementia," "Problems of Behavior," and "Problems of Mood."
72. Keck, Forgetting Whose We Are, "Introduction" and chapter 1, "Deconstruction Incarnate."