Beyond Recognition: Terminal Illness, Continual Gift
What Alzheimer’s Disease Teaches Us About Love
Last summer, my father visited an old friend and coworker in the nursing home where he lived. The man had been suffering from Alzheimer’s disease for many years. My father made his way to the floor where “Joe’s” room was, and saw him at the end of the long hallway. As he approached, Joe’s face lit up. “Ah,” my father thought, “he remembers me after all!” My father greeted Joe, and it did not take more than a moment or two to realize that Joe had no idea who my father was, nor did he have any recollection of their history together. Even so, my father stayed with Joe for an hour or so, talking about the weather and making the kind of small talk you would with someone you’ve just met. After all, the two men did just meet.
About a month later, my father went to Joe’s funeral. In attendance were his wife and children, and they conveyed their deep sorrow, along with a sense of relief that Joe’s suffering was finally over. During her eulogy for her father, Joe’s daughter commented, “This man is not my father. My father died two years ago,” referring to when Joe had finally lost all memory of who he was, that he had a family, and anything else about himself. This is a profound statement about the nature of man as a person, and about Joe himself. “This man is not my father.” Then who is he?
Since the entrance of sin into the world, suffering and death have been a part of daily life. The pain of illness is difficult to endure, regardless of one’s age, social or economic status, or faith life. Even more difficult can be watching the pain of another, especially of a loved one. Persons with debilitating conditions such as cancer or Parkinson’s disease often endure a particularly poignant suffering, because it can last for months or even years, causing weakness and pain both to the subject and his family and friends. Contemplating the suffering of such persons can lead us to ask, “What worth is there to suffering? What is its purpose and meaning? How can a person really be living if he cannot be productive: if he cannot think, speak, work, or even pray?”
Through this paper, I will address the question of suffering and the so-called “quality of life” issue. I will do so specifically with regard to Alzheimer’s disease, which, it is said, affects those it afflicts by eventually robbing them of their very selves. Is one afflicted with Alzheimer’s truly “not himself anymore” because he has lost all connection to his family and friends, and even to his own history as a person? Is he even a person at all anymore? And what possible good can be found in such a profoundly debilitating and, some would say, degrading, disease? These are the questions I will address in this paper, and I will do so through the lens of the destiny of each and every person, created in the image and likeness of God, to participate in divine Trinitarian communion. Without grounding our purpose for being in this destiny, made possible through the Incarnation of Christ who “reveals man to himself,” suffering will remain for us an absolute, meaningless and inescapable evil.
Am I a Person?
The definition of what or, rather, who, a person is, is rather elusive. Technical definitions, such as Boethius’ individual substance of a rational nature, can help, but the heart of what we know a person to be from the depth of our own experience is not adequately described in this way. Father Robert Spitzer, S.J., in defending the dignity of all persons from conception to natural death, writes that a person is “a being possessing a to ti en einai or guiding impetus toward fulfillment/perfection through unconditional, perfect, unrestricted, and absolute Truth, Love, Goodness/Justice, and Being.”  Because he is appealing to a philosophical argument for the dignity of the human person in order to be heard by both people of faith and those with no belief in God, he adds that his definition is “valid irrespective of whether the above mentioned ‘guiding impetus’ originates from merely genetic sources, a spiritual source (for example, a soul), or both.  (Emphasis added). This definition rightly notes the concept of the transcendental nature of the person, but I do not believe it is adequate to say that the “guiding impetus” can originate from a purely genetic source. The person is not one who is merely superior to all other creatures on the basis of his genetic makeup and intellectual capabilities – although that is certainly a part of saying what the person is.
My own being is not something self-derived, but is given to me by God. That I am a member of the human species with the capacity to think, feel, write, laugh, and a hundred other human actions is all part of what makes me a person. I am a conscious subject, self-possessed and self-determining, and I am a person.
To say that a person, one who has cognitive abilities and physical capabilities that allow him to live in relation to others, to be a productive member of society, to enjoy culture, and to pursue spiritual fulfillment, is worthy of respect and must be accorded personal dignity seems obvious. But what about those who do not possess the cognitive and physical capabilities that are normative of personal functioning? What of the person who suffers from Alzheimer’s disease, and has no idea who his wife or children are, or who no longer knows what a fork is used for, or how to button his own shirt? Is he a person? Again, Wojtyla pushes us further into the depths of who the person is:
This is the heart of what it means to be a person. The person is a subject, but this is only because he is given this subjectivity; in fact, he is given everything he has. What makes a person, and what gives him dignity, is that he is a human being, as well as the fact that the Word was made flesh, transfiguring the flesh of every human person, regardless of their weakness, lack of capability, or sufferings. Is the person with Alzheimer’s disease a person, worthy of the dignity accorded to all other persons who are of higher intellectual and physical capability than he? The answer must be yes, on the basis of the fact that he is a human being –that God willed him to be.
This Is Alzheimer’s
“Alzheimer’s disease is a progressive brain disorder that gradually destroys a person’s memory and ability to learn, reason, make judgments, communicate, and carry out daily activities.”  Alzheimer’s disease most often affects patients over the age of 65, but cases of the disease have been reported in people who are only in their mid-late 50’s. The disease seems to manifest itself slowly at first, and can be mistaken for simple absentmindedness, or the natural state of things, as one gets older. But what begins as merely forgetfulness eventually escalates to forgetting certain words as one tries to communicate, not remembering how to get home from the grocery store, and difficulty grasping the meaning of words and sentences uttered by others in conversation. As the disease progresses, the patient loses more and more of his cognitive abilities, and his physical capabilities become greatly diminished as well. The person afflicted with Alzheimer’s eventually loses all recognition of those people closest to him, and loses all or most recollection of his own personal history, his connection with his past. He is, in effect, ever confined to the present. This moment for him is the only moment. Finally, he will have difficulty eating, become incontinent, and eventually become confined to his bed. At this point, it is only a matter of time before his body, too, shuts down, and he is gone.
The Patient Afflicted with Alzheimer’s: Am I Still Me?
I have said that the person is one who is a subject endowed with certain physical, intellectual, and spiritual capabilities – a subject who can relate to others as a self. I have also said that personhood, and the dignity accorded to a human being, does not rely solely on what that being can do, on whether or not he has perfectly realized physical, intellectual, and spiritual capabilities. A person as such is worthy of dignity because of the fact of his being, which was willed by God from all eternity.
The person with Alzheimer’s may well have had superior capabilities before the disease manifested itself in the gradual loss of his ability to think, reason and communicate. When this loss happens, and when he loses even the awareness of who he is and his relationship to everyone significant in his life, we might well ask, “Is he the same person?” To be the wife or daughter or friend of someone with Alzheimer’s and see the gradual deterioration of mind and body must be devastating, and surely the cause of confusion. Is this the person I have known for 5 years, for 35 years, for my whole life? How can this be the same person, when he remembers nothing of our relationship with each other, cannot recall any of the times we shared, and does not even show signs of remembering that we’ve met before?
In a beautiful book entitled, “There’s Still a Person in There: The Complete Guide to Treating and Coping with Alzheimer’s, caregivers share their stories of living with this disease that slowly takes the person they have known and loved away from them. In the story of Ann and Julian Davidson, Ann talks about how her husband, a professor of physiology at Stanford University, slowly slipped away from her, and in the early stages of the disease, tried to come to terms with what this “slipping away” meant for both of them. “Over and over again, he asked Ann, ‘Who will I be?’ The question broke her heart. She struggled to maintain her composure, to reassure him. ‘You’ll always be you, and I’ll always love you.’ But inside, she was asking herself the same question. Who is he becoming?”  This is, indeed, a difficult realization for a loved one caring for an Alzheimer’s patient. But it must be that there is something more to the person than the exercise of his intellect, or even the retrieval of his memories. As William May says,
In spite of the ravages of the disease, it must be that the person with Alzheimer’s is still essentially himself, in his very being, for “That which is spiritual cannot undergo disintegration, destruction, or death. The truth of the immortality of the soul is simultaneously the truth of the indestructibility of the person.”  The body of the Alzheimer’s patient remains his body; it does not undergo some sort of change that makes it other than who he is. Likewise, that same person’s soul, the indestructible spirit God Himself “breathed” into him is the same. The Alzheimer’s patient may have lost consciousness of who he is, but who he actually is remains regardless of his awareness. Ann Davidson comments, “It’s amazing how much you can lose of what you once considered essential to your self, and still retain your humanity…It’s amazing to me, impaired as he is, Julian is still with me. There’s still a living person in there.”  What Ann Davidson, and so many other caregivers intuit about their loved ones, without the benefit of philosophical or theological training is a lesson to all of us. The person we love, for his own sake, the one whom God created for his own sake, is never other than himself at the core of his being.
Opportunities in Suffering:
What Alzheimer’s Teaches Us About Love
To suffer is the lot of all “sons and daughters of Adam,” the result of the entrance of sin into the world. But if all of us are in solidarity with regard to sin, then we are most assuredly united in our redemption. Jesus Christ, “by death trampling death,” has made suffering and death the way of redemption. They are no longer merely “useless evils,” but the path of salvation and transfiguration. As difficult as it is to understand when we, or some one we love, is affected, suffering is not empty and worthless. It is educative for those enduring it, as well as their caregivers, and it is a path to metanoia, if one allows oneself to walk that path.
The saints and Fathers of the Church have all studied the nature of suffering, many times from their own very real experience. St. John Chrysostom says that “God does not permit illness to debase us, but because he wanted to make us better, more wise, and more submissive to his will, which is the basis of our salvation.”  St. Seraphim of Sarov says that through illness “man comes back to himself.”  Both of these saints make points relevant to the discussion of Alzheimer’s and its effects on the sufferer, as well as on his loved ones. I do not believe God’s allowing a person to be afflicted with Alzheimer’s, or any disease, constitutes his punishment of that person.  Rather, illness and suffering becomes a pedagogical tool aiding in our process of divinization, a process that will only be completed in the eschaton. The suffering person, specifically for the purpose of this paper, the person with Alzheimer’s, is in a mysterious way called “back to himself,” as St. Seraphim claims. This calling back manifests itself in the person’s behavior, his personality, and his way of relating to those he no longer recognizes.
I would like to focus on this “calling back” because it seems to be key to understanding something of the nature of suffering, particularly for the Alzheimer’s patient. For there is a way that he returns to a sort of “original solitude” (to use Pope John Paul II’s terminology), in which he is alone. He is alone with himself and his suffering, although he may not be aware of any suffering, especially as long as he is physically healthy. Still, he lives in a kind of communion of persons with his caregivers, whether family members or professionals in a residential care facility. If he cannot recognize who they are, he can still recognize their tender care, a loving touch, and a warm smile, and these things make him know that someone cares for him. There is, I believe, a relationship with God somehow there, even if he is not cognizant of it. God is present to the person – whether he is aware of it or not – and He is present to the family, and provides them with graces to continue caring for their loved one. If Christ allows our participation in redemption by “making up for what is lacking” in His sacrifice, then we must believe that He will just as willingly make up for what lacks in our ability to fulfill our duties as a partner with the Absolute when recognition of even Him has left us.
The person with Alzheimer’s is effectively stripped of everything: his intellectual capabilities, his physical prowess, the ability to communicate, and his memories of his own history. He is, in a way, ontologically naked . He stands before God in all simplicity and humility, and without shame. Caregivers and family members often report that the Alzheimer’s patient undergoes a change in disposition as the illness progresses. Sometimes this change manifests in anger and acting out, but this is most often the result of the frustration of struggling to understand those who are trying to communicate with him, or anger at himself for being unable to say what he is thinking, or to remember how to do the simplest of tasks. In a safe, nurturing environment, acting out becomes more rare. The change in disposition seen more frequently is from being closed in to very open, from sharp to tender, and aloof to loving. “Perhaps these new, more pleasant traits were always there, hidden deep within the person but never revealed until Alzheimer’s inexplicably liberated them.”  This is an astounding statement to make, especially within a culture that sees no value in suffering, and could easily justify the “merciful ending with dignity” of the life of an Alzheimer’s patient. Imagine what would happen if such a person, who had been difficult to live with, perhaps caused great hurt in the lives of family and friends, were “mercifully” removed from the degrading circumstance of this illness. It could mean the loss of his opportunity to make peace with his loved ones, gifted with a simplicity and humility not experienced before, and only now possible because of the strange blessing of his disease.
One of the things many people believe about Alzheimer’s and focus on is the seeming “return to infancy” that patients experience, a kind of regression back through childhood until they are almost babies once again. But this is a reductive view of a person with the disease, and it does not account for his dignity as an adult person. “Even though they appear increasingly childlike, people with Alzheimer’s are still adults. Even with severe Alzheimer’s, many people retain some of their adult personalities and continue to respond to some of the interests they enjoyed before the disease developed.”  Caregivers are cautioned to remember that this person, despite the childlike behaviors he may display, is not a child, and treating him as one is beneath his dignity as a person. It is true that some of the same safety precautions one uses in a home with an infant or toddler must be in use with the Alzheimer’s patient, and his disposition may appear more and more like that of a child. But he is not merely an “overgrown baby;” he is an adult person suffering from a disease that manifests itself in this way, and he must be treated with the same love and respect as any adult human being who is a husband, a father, a coworker or friend.
“Amen, I say to you, unless you turn and become like children, you will not enter the kingdom of heaven. Whoever humbles himself like this child is the greatest in the kingdom of heaven.” (Mt. 18: 3-4) These words of Christ to His followers were not an exhortation to abandon adulthood and its responsibilities and behave like children. Rather, it was a call for the acknowledgement of their dependence on God as Creator and Giver of their being. Perhaps the proper understanding of the Alzheimer’s sufferer’s “regression” to childhood is of one who is, as I have said, alone in his suffering, ontologically naked before God, and radically manifesting his dependence on God. He may not be aware of God’s presence, of being in relation to Him, or even that he is dependent on Him. But God is aware, He who sees and knows everything, who even knows the mystery of who each one of us is, better than we know ourselves, because He fashioned each one of us. For the sufferer, Alzheimer’s becomes the means by which “becoming like a child” is realized far more perfectly than perhaps for someone of superior intellectual capability. “And whoever receives one child such as this in my name receives me.” (Mt. 18: 5). For the caregivers and loved ones, too, there is an opportunity for spiritual and emotional healing, for transfiguration.
There is no question that suffering and illness is a hardship, the result of sin, and a manifestation of evil in the world. There is also no shame or wrong found in the avoidance of suffering and pain. It is not sinful to take an aspirin to calm the raging of a headache. God does not demand us to simply live with pain that can be alleviated. At the same time, however, I believe He sometimes asks us to be heroic at times and in situations when we would rather not. I believe that illness, and particularly Alzheimer’s, calls for such a response. It calls those afflicted and those who care for them to unite with the suffering of the Cross. The one who is afflicted is united in a profound way – whether he is fully aware or not – with the suffering of Christ. The caregivers and loved ones are united in suffering as well, and I think it is most profoundly with Mary, who in her pain would surely have preferred not to be at the foot of the cross, watching the death of her Beloved, but went there, was merely present to Him, and in doing so showed us how to be present to those who need us in their suffering.
The person afflicted with Alzheimer’s is most certainly still a person because God has created him in His image and likeness. He has the stamp of immortality and the breath of life within him – a spiritual soul – and a body fashioned by God to be uniquely his. God creates every person for his own sake, and for union with the Trinity, and He does not renege on the promise of the gift of life, so long as we are faithful. He has given us to ourselves, and He continues to give that gift, regardless of our state of wellness or suffering. In fact, His love is so great and so limitless that even in our suffering – a suffering He Himself endured – He gifts us with the opportunity to “become like children” and draw ever closer to Him in humility and love. The gift of the person with Alzheimer’s to the rest of us is the recognition, if we have eyes to see, that God is calling each one of us to Himself, and to His infinite love.
About Alzheimer’s disease, www.alz.org/Resources/FactSheets/FSADFacts.pdf
Castleman, Michael, Dolores Gallagher-Thompson, Ph.D. and Matthew Naythons, M.D. There’s Still a Person in There: The Complete Guide to Treating and Coping With Alzheimer’s. New York: The Berk Publishing Group, 1999.
Larchet, Lean-Claude. The Theology of Illness. New York: St. Vladimir’s Seminary Press, 2002.
May, William E. Catholic Bioethics and the Gift of Human Life. Indiana: Our Sunday Visitor Publishing Division, 2000.
Spitzer, Robert J. S.J, Ph.D., with Robin A. Bernhoft, M.D. and Camille DiBlasi, M.A. Healing the Culture. A Commonsense Philosophy of Happiness, Freedom and the Life Issues. San Francisco: Ignatius Press, 2000.
Wojtyla, Karol, trans. Theresa Sandok, OSM. Person and Community. Selected Essays. New York: Peter Lang, 1993.
Reimers, Adrian J. “Human Suffering and Pope John Paul II’s Theology of the Body.” Nova et Vetera, English edition, Vol. 2, No. 2 (2004): 445-60
1. Healing the Culture, p. 52
3. Karol Wojtyla, Person and Community. P. 178
4. Ibid, p. 179
5. About Alzheimer’s disease, www.alz.org/Resources/FactSheets/FSADFacts.pdf
6. Castleman, Gallagher-Thompson and Naythons, p. 17.
7. William E. May. Catholic Bioethics and the Gift of Human Life, p. 160.
8. Wojtyla, p. 174-175
9. Castleman, Gallagher-Thompson and Naythons, pp. 28-29.
10. Quoted in Jean-Claude Larchet, The Theology of Illness, p. 60.
11. Ibid, p. 59.
12. Larchet explains that the Fathers “add that illness represents a correction that God inflicts on man because of his sins. This correction should not be understood in a negative sense as punishment or chastisement, but rather in a positive sense expressed by the Latin verb corrigere, which signifies to correct, reform, ameliorate or heal.” P. 61.
13. Cf. Larchet, pg.59.
14. Castleman, Gallagher-Thompson and Naythons, p. 103.
15. Ibid, p. 40.
Copyright ©; Ann Hanincik 2004
Version: 21st December 2004