Awareness: A Personal Memoir on the Declining Quality of Life in Alzheimer’s
(Dementia, 1(3) 359-366, October 2002--copyright by Sage Publications, Ltd.)
(written in 2001, edited 2/26/12)
I am 61 years old, a retired professor; I live alone. At the University of California Santa Barbara I used to teach a course called "The Social Psychology of Affliction." One of its inspirations was the book Suffering by radical Christian theologian Dorothee Soelle (1975). Compassion means understanding and overcoming the tendency to blame or ignore the victim and to refuse to worship a false God who abets this. It means healing interventions on a personal and societal level, and when nothing concrete can be done, to be in solidarity with the afflicted person and help him1 bear his burden.
In 1997 what appeared to be a progressive attention-deficit disorder led me to a neurologist. The initial MRI suggested frontotemporal dementia, but in August 1998 a PET scan at UCLA led to an Alzheimer's diagnosis. Since then my clinical presentation has become more characteristic of AD, with impairment of visual processing and slowness of thought, but without marked frontal symptomatology. I have pioneered the application of brain-injury rehabilitation concepts to dementia, presented my studies at conferences, and recorded my journey in essays. Recently, I have been experiencing decline; vital active living feels more remote, as does the past when I used to be ‘normal’. It increasingly takes all my mental energy to do a creative writing project like this article and otherwise just get through the day. I evaluate myself as having decreased quality of life (QOL). I ask myself: is it worthwhile to monitor my QOL, or does awareness have an unreasonable cost? If it is indeed worthwhile, how can I assess and monitor my QOL, both as a basis for improving it and for making ultimate decisions? It is an attempt to address some of these issues that consumes the remainder of this personal account.
QOL: Is An Individual Matter
Keeping a journal aids my weak memory. Reviewing my journal, I inquire whether my life has been worth living (the answer is "yes," so far) and why. QOL is an individual matter, which partly depends on what sort of life the person considers meaningful. For me, as a liberal Jew, such a life includes both responsibility and creative self-expression or meaningful experiencing. Living in the now is not sufficient; one must be capable of cherishing memories and envisioning the future.
Being responsible, I can assess the consequences of my actions and seriously attempt to "do justice and love kindness." I can make a contribution, as in writing this essay. As for suffering, I'm called to endure a certain amount of it, but there are limits. QOL involves not only being a responsible person and having a limit on suffering but the realization of the intimate self, which is harder to pin down in concepts. My 11-year-old granddaughter and I went on an errand at night and admired together the beauty of the moon shining through clouds. I felt this was a meaningful sharing. It was represented as an ingredient in quality of life. I was not only enjoying the moment, but also being a self who could reflect on life, a self who could participate in beauty and love and be grateful for this. What is not essential for QOL is quantity of productivity or experience. I perforce have a very simple life but, with Thoreau, I may thereby more cleave to the marrow.
With mild AD I can, to a significant extent, limit suffering, be responsible, and have intimate experiences, just as persons with chronic fatigue syndrome or mild traumatic brain injury can. But the greatest challenge to QOL in AD is the darkness of the future.
"Living in the now" is no answer. Essential to the being of the self is its becoming. When we celebrate the immediacy of an experience, there are inarticulate links to memory and hope. Without these one feels, with AD patient Larry Rose, "trapped in the dull numb present." It is good to prize the ongoing experience of life, but if one habitually "lives in the now" to run from fear, then the fear will tend to increase and one can feel like a pet rather than a person.
The spectre of the dark future of advanced AD is a significant challenge to QOL in mild AD. The usual response is to make decisions that must be made (e.g., "no extraordinary means") and then avoid thinking about the future. I believe that this approach tends to distort life and to be unsuccessful in eliminating fear, just as happens when processing past trauma is avoided. Instead, drawing on Bryden (2002) and Herman (1997), I treat the "future trauma" of advanced AD in ways that Holocaust survivors have found useful. This means, in a supportive environment, fully facing what is most distressing, and feeling the feelings. Only then is one in the best position to move on from them.
For me the horror of AD is summed in a statement by Dempsey and Baago (1998): "While the physical being of an individual with a dementing illness remains intact, the very essence of a person --the psychosocial self-- slowly disintegrates." It can be questioned how true this is. Nevertheless, their statement well expresses the horror, with its uncanniness of the slow disintegration of a self whose essence, presumably is to integrate. Just how could one even conceive of a self-slowly-disintegrating?
Spirituality can offer a less vulnerable conception of the self. As Bryden (1998) suggests:
"I believe that God knows us in our entirety, each and every part of this kaleidoscope of who we are. As I unfold before God, as this disease unwraps me, opens up the treasures of what lies within my multi-fold personality, I can feel safe as each layer is gently opened out.... [The] unique essence of 'me' is at my core, and this is what will remain with me to the end. I will be perhaps even more truly 'me' than I have ever been."
I agree with Bryden on the importance of spirituality. It is natural to ask, facing a dreadful situation, "Does God exist? Can He help me?" While I don't share her beliefs, I can nevertheless draw on spiritual resources. I believe along the lines of Rabbi Harold Kushner who wrote ‘When Bad Things Happen to Good People’ (1981). His son's illness and death from progeria was due to chance, not God. There is no God powerful enough to prevent evil, but "God," or the spirit of love, can help people cope with suffering and grow from it. God cannot prevent the loss of self when AD is sufficiently advanced, and that will be a real death. I do not believe in Heaven. I do believe, though, in a God that, as long as I am still me, I can turn to in need, and who can help me face any truth and live in hope, not fear: "Yea, though I walk through the valley of the shadow of death I will fear no evil, for Thou art with me."
An Experiment in Truth
Viktor Frankl wrote in Man's Search for Meaning (1963):
"Once the meaning of suffering had been revealed to us, we refused to minimize or alleviate the [concentration] camp's tortures by ignoring them or harboring false illusions and entertaining artificial optimism."
It can be questioned whether this is good advice or whether Frankl actually did this. Nevertheless, I am undertaking a similar "Experiment in Truth," and I need to think carefully about "why." I need to search my past for my deepest memories and motivations. I need the strongest roots I can find. One root is identification with my people who perished in the Holocaust. Another root is the tragic knowledge that my children had suffered when small because I had "harbored false illusions"--regarding their mother's parenting.
But witnessing to truth is not only grim responsibility but also opportunity for transcendence. Frankl quotes Rilke, who presents a powerful vision (e.g., in the 10th Duino Elegy) of full responsiveness to suffering as a path to rare fulfillment in joy. This is perhaps a universal vision of poets and saints: Shakespeare - "Love is not love which alters when its alteration finds, or bends with the remover to remove." Thus confronting the challenge of suffering is not only pertinent to the depths of sorrow, but to the whole of life, to the pinnacles of joy. It sends a message about what life could be.
I will discuss in some detail Cary Henderson's (1998) account of his experience with moderate AD. I think he probably would have suffered less if he had adopted my philosophy. Cary was diagnosed with Alzheimer's disease in 1985 and tape-recorded a journal in 1991 and 1992. Six years later he was mute and in a nursing home. Like me he used to be a professor. His journal is poignantly revealing of his distresses and occasional joys. What is his quality of life? I can imagine myself in his situation. What would be my quality of life? Cary has a sense of purpose:
"I'm taking it as one of my duties in trying to write this book, to sort of get people with Alzheimer's knowledgeable about what they can expect and what they can do, and of course, what they can't do." (p.4)
He has little joys: a little dog (p.13), a sense of humor (p.14), music (p.17 and p.42), the bird feeder and autumn leaves (p.77). And there is family warmth. He suffers, but it is not, for example, the suffering of a person alone and impoverished, the suffering of a quadriplegic or a burn victim, or of a person severely depressed who finds life meaningless and can't imagine ever laughing again. He does not suffer like Job:
"Why is there light for the wretched, life for the bitter-hearted, who long for death, who see it as if it were buried treasure, who smile when they reach the graveyard and laugh as their pit is dug."
Nevertheless, Cary can write "It's somebody's version of hell," and the photos illustrating the book subtly but powerfully express the pervasiveness of despair. I recall that over the gate to Dante's Hell is the inscription, "Abandon hope, all ye who enter here."
I sense Cary's overall assessment of his QOL is expressed when he writes: "I really sincerely believe that if somebody wants to go ahead and die from Alzheimer's, if life has become that bad for them, I think anybody who can quietly assist them to die, I think, would be a boon:
‘This Dr. Kevorkian,... I think he did the right thing....
When your mind is dead or dying, and there's no recourse, and the best you can do is spend the rest of your life in pure stupidity’ (Henderson, 1998 p.71).
I feel with Cary. By his standards and mine he is not yet ready for Dr. Kevorkian. On the other hand, Cary's not exactly saying, "I hope a person with AD who is tempted to call Dr. Kevorkian will read my book and realize how rewarding life with moderate dementia can still be." Cary's QOL is deep within the grey area or Twilight Zone, as mine is likely to be in a few years.
I would categorize Cary's suffering as a sort of moderate depression, although in contrast with normal moderate depression a person with dementia tends to have blankness and hopelessness but also more moments of pleasure. Cassell (1991) provides a conceptual framework:
"Suffering occurs when an impending destruction of the person is perceived; it continues until the threat of disintegration has passed or until the integrity of the person can be restored in some other manner."
This helps us understand the power and horror of Dempsey and Baago's statement recalled earlier. Cary is not in physical pain, can walk, can hug, and can laugh. Yet he not only suffers but his condition in a way expresses the quintessence of suffering.
Part of Cary's suffering, where he feels down on himself (guilty, for example), might well be remediable through cognitive therapy. But his loss of participation in life and the darkness of his future are more difficult, though not entirely hopeless, issues. I think: ‘Well, if I were as impaired as Cary I wouldn't suffer as much because I'd do such-and-such’. But then if I'm honest, I think: ‘Well, yes, maybe I'd suffer 80% as much, but, given another year down the road, how much would I suffer?’
Cary feels half-alive: "I was very busy in all sorts of things when I was alive, you might say. Then, just gradually, these things became impossible." (Henderson, 1998 p.35) As he goes on to explain: "The caregivers ... deserve ... their times away from us.... We can be very tedious. I can be very tedious, and I'm aware of that." (p.82). Here I can't resist quoting an authoritative text on caregiving (Cohen and Eisdorfer, 2001) who state: "Regardless of your personality, professional training, or background, it is hard to be close to the patient for long periods without feeling upset or uncomfortable." (p.96). As Henderson (1998) commented, "My biggest fear is going into a nursing home." (p.72) Compassionate dialog is called for in this situation
And there is Cary’s remark about spiritual alienation and isolation:
‘I did stop going to church--the biggest reason--well, there were two reasons--one of which I am not really enamored of a God who creates something like Alzheimer's and the second is I'm afraid of tripping.’ (Henderson, 1998 p.73)
Active participation in life and interpersonal connection are seriously impaired, in the future it will only get worse, and God is no help. Why doesn't Cary want to die yet? Persons with dementia can easily forget or dissociate, so he doesn't need to think these dark thoughts all the time. And he doesn't. Music, in particular, is a reliable escape: "The only real constant friend I've got is music." But it is not, I think, very nourishing to his soul - he poignantly states that it makes him "want to be somebody I'm not." (Henderson, 1998 p. 17)
Reflections on My Future
One of Cary's afflictions is self-denigration: "I just feel so darn useless at times. I just feel a sense of shame, in a way, for being so unable to do things, and so dense" (Henderson, 1998 p. 18). Hopefully, with a compassionate spirituality and with cognitive therapy, if I had Cary's degree of impairment I would have more self-esteem and thus have a higher QOL. Thus I conceive that capacities like Cary's for self-reflection and the appreciation of music would enable me to have a life more than marginally worth living.
As this disease advances, probably self-reflection will go before my capacity to respond to music (cf. Sacks, 1998) or my conscience. Still, I hope to retain it for years. I am aware that self-reflection is usually lost early in AD, yet I want to suggest that this may well be for psychological rather than for irremediable neurological reasons. The self is an object of emotional importance whose comprehension does not require the ability to rapidly think on one's feet (which goes quickly in AD). The self changes slowly and it is close at hand. It is just the sort of thing that a person with AD retains capacity to learn about. It's interesting that people who are good athletes, poker players, or party conversationalists are not particularly known for their self-understanding, whereas slow, deep thinkers are often impractical and forgetful of mundane details. Cary's "words and images convey no vital memory or hope for the future," as it says in the foreword to his book. But this seems due to sadness and fear rather than to cognitive overload. Bob Simpson (1999), a minister diagnosed with AD is explicit about the sadness and fear. He declares that he's lost his stories, yet can intelligently discuss the implications of his AD experience for his theology.
Sabat (2001) discusses the underrated capacity for empathy of persons with moderate dementia and Zgola (1999) comments on their surprising capacity to follow a chain of logical reasoning. I would think that these abilities combined would imply a capacity for self-reflection.
When it goes, self-reflection would probably not go all at once. The progression of AD has been characterized as progressively lowered stress tolerance (Hall and Buckwalter, 1987), and self-reflection, integrating disparate elements of a personality whose essence is dialectical (Allport 1955), entails a certain degree of stress. When a TAB (a normal, or "temporarily able-brained" person) is highly fatigued he feels, correctly, that this is not the time to think through who is he really and where is he going with his life. Yet fatigue does not rob us of conscience or ability to briefly respond to strong emotional stimuli. As AD progresses there would be less and less mental energy to think about the deeper issues of life. Currently, I retain much ability to read, so I don't need to rely on my fading memory to the extent Cary would in order to put my thoughts together. But eventually I can anticipate fewer and fewer hours during the day where I can be anything but empty and passive, and then (if I'm still around) my QOL will decline to Cary's and sink below it.
The reason that I can look on this gloomy prospect with some serenity is that I believe that I can probably choose death before I entirely lose my capacity for self-reflection and thus for human dignity. I don't need desperately to avoid this fate, but if I look ahead boldly and do my best to plan to avoid it, I can hopefully liberate myself from present anxiety. The consequences of a recurrence of cancer (e.g., chemotherapy of doubtful effectiveness) may well entail more misery than either suicide or nursing home residency, and yet many persons have accepted this possibility without living in painful anxiety (Spiegel, 1993).
Looking down the road to write this article has been uncomfortable, but I feel it has been fortifying. I feel in solidarity with my ancestors:
"One technique that helped Jews throughout the ages acquire the courage and fortitude to withstand suffering for Torah ideals is the practice of giving up one's life not to forsake Judaism. They would imagine details of being killed with all kinds of torturous devices. Imagery of this type ... gives one the strength and courage to withstand lesser suffering." (Pliskin, 1983)
1. I use the generic masculine because of the personal nature of this essay. If I were a women I believe I'd use feminine pronouns generically.
G. Allport, _Becoming_, Yale University Press: New Haven, 1955.
C.Bryden, "A person-centred approach to counseling, psychotherapy and rehabilitation of people diagnosed with dementia in the early stages," _Dementia_, 2002 (in press).
C. Bryden (Boden), _Who Will I Be When I Die?_, HarperCollins: Sydney, 1998
E. Cassell, _The Nature of Suffering_, Oxford University Press: New York, 1991.
D. Cohen and C.Eisdorfer, _The Loss of Self_, Norton, New York: 2001.
M. Dempsey and S. Baago, "Latent grief: The unique and hidden grief of carers of loved ones with dementia," _American Journal of Alzheimer's Disease_, March/April, 1998.
Viktor Frankl, _Man's Search for Meaning_, Beacon Press, Boston: 1963.
Hall, G. and Buckwalter, K. "Progressively Lowered Stress Threshold," Archives of Psychiatric Nursing, 1 (6), 1987, 399-405.
C. Henderson, _Partial View_, Southern Methodist University Press, Dallas: 1998.
J. Herman, _Trauma and Recovery_, BasicBooks, New York: 1997
H. Kushner, _When Bad Things Happen to Good People_, Schocken, New York: 1981.
Z. Pliskin, _Gateway to Happiness_, Bnai Yakov, Brooklyn, 1983.
S. Sabat, _The Experience of Alzheimer's Disease_, Blackwell, Oxford: 2001.
O. Sacks, "Music and the Brain," in C. Tomaino (ed.), _Clinical Applications of Music in Neurologic Rehabilitation_, MMB Music, St. Louis, 1998.
R.Simpson and A. Simpson, _Through the Wilderness of Alzheimer's_, Augsburg Fortress, Minneapolis: 1999.
D. Soelle, _Suffering_, Fortress Press, Philadelphia: 1975.
D. Spiegel, _Living Beyond Limits_, Random House, New York: 1993.
E. Wiesel, _Night_, Hill & Wang, New York: 1960.
J. Zgola, _Care That Works_, Johns Hopkins University Press, Baltimore: 1999.
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