Introduction to "Love Endures" - a book in progress. Comments and suggestions appreciated!!
Love Endures: A Christian Look at Dementia
A Guide for Personal or Group Study
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Introduction: The Unbearable Loss
Session 1: What Makes a Person a Person? What
Makes Life Worth Living?
Session 2: Humans are Made in the Image of God
– Creativity and Responsibility
Session 3:
“No One is an Island”: The Importance of Community in Human Identity
Session 4: Who’s the Immortal Here? The
Biblical View of the Soul.
Session 5: Dementia 101- The Basics: Causes,
Early Detection and Treatment
Session 6: A Biblical Approach to Medical
Ethics
Session 7: Ministering to Those with Dementia
Session 8: “And Then Comes the End…”: Dementia,
Death and the Christian Hope.
About the Author….
Jim Wright is a physician,
theologian and writer who devotes his medical practice entirely to the care of
the elderly in nursing homes and assisted living facilities. He received his
PhD and MD from VCU Medical School, and received a Master’s of Arts in
Theological Studies from Union Presbyterian Seminary. In addition, he holds a
certificate in Bioethics and Health Policy from Loyola University, Chicago.
Copyright
2011, James Lee Wright. All rights reserved. No portion of this work may be
reproduced or distributed without the author’s express written permission.
Introduction:
THE UNBEARABLE LOSS
“No theory of medicine can explain what is happening to
me. Every few months I sense another piece of me is missing. My life… my self…
are falling apart. I can only think half thoughts now. Someday I may wake up
and not think at all… not know who I am. Most people expect to die someday, but
whoever expected to lose their self first. “
-JT, a person with Alzheimer’s disease[1]
“…what a great faculty memory is, how awesome a mystery!
It is the mind and this is nothing other than my very self!” [2]
-Augustine of Hippo, Confessions X.26 (397 AD)
Individuals have a cold, have cancer, have the measles.
Alzheimer’s has the individual.
-Richard Taylor, Alzheimer’s from the Inside Out
What is the one
thing which you could not bear to lose?
Think about it – what is so
precious to you that, without it, life would become unbearable, worthless?
Would it be the loss of a loved one - spouse, children, parents? Maybe it’s
something material - your business, house or wealth, or perhaps immaterial – faith,
youth, health, reputation? Out of the many things you automatically consider
when thinking about loss, you probably don’t think about losing your self -
your identity. What if, though? What if the person that everyone knows as you –
your characteristics, your habits, your passions, your memories, your very
identity – was destined to slowly disappear? Those who have a diagnosis of dementia
are faced with just this possibility. Memory is essential to who you are. Since
dementia slowly destroys memory, it also destroys connections to family and
friends, to vocation and habits. As the disease progresses, one loses more and more of one’s
personal history – cherished childhood memories, high school friends, career
achievements, family vacations, Christmas mornings – all disappear. Finally,
the person with dementia can’t remember where he is, how to bathe, dress, walk
or even eat. With all these losses, the person with dementia is threatened with
the ultimate loss – the loss of the self, the personal identity.
A diagnosis of dementia is accompanied by some excruciatingly
tough questions: “Who will I be when I no longer have my past?” “Will life be
worth living when I change so much that I’m no longer me?” For many people,
this is the unbearable loss, so much so that some even speak of suicide when
confronted with the disease. People that can survive the loss of their family,
wealth, or even faith, seem not to be able to bear the loss of their identity.
“How could life be
worth living if I’m no longer me?” When we ask this question, we assume that
life’s meaning and value depends mainly on who we are or what we think. Most of
us are greatly influenced by our culture, one that emphasizes production and
independence. American individualism places a premium on being “self-made” and
contributing to the wealth and productivity of society. A person becomes
significant by what they do and say, who they influence, how much they make.
Clearly, our culture benefits tremendously from the contribution of individuals
in medicine, technology, business, and many other fields. It is not achievement
which is bad, but rather tying worth to achievement which is the problem. If
you doubt that western culture ties value to productivity, simply walk into a
nursing home that subsists mainly on public funds. The underfunding of elder
care, especially for the poor, demonstrates how little we value those who no
longer fit our ideals of individual achievement and independence. There are few
of us, then, who can’t relate to the question “Could life be worth living when
I’m demented, when I’m no longer me?”
“Could life be worth living when…?” Perhaps there is a more
basic assumption at work here. Is the worth and the meaning of life
changeable? When we ask the question, we are saying that the value of life
depends – depends on what happens to us, or what we make of ourselves. This is
certainly not a minority view – both modern philosophy and popular culture
assert that humans can define and are indeed responsible for the meaning of
their existence. Many, in fact, believe that all value is created by
human experience and effort. These philosophies fail, however, as we lose
strength of muscle and clarity of mind. Ultimately, the question, “how do we
find meaning in life?” has no satisfying answer in the face of dementia. This
series of lessons, in fact, does not even attempt to answer the question “how
do we find meaning?”, because the Bible does not attempt to answer this
question. Rather, the witness of the Bible affirms this statement: life’s meaning is not found, life’s
meaning is given. The Biblical view insists that meaning and value
are not found through the actions, productivity or aspirations of humans, but
given by God as the ultimate owner of all life and definer of life’s value.
Christians, especially, have fastened on God’s love as the foundation of human
relationship and human value. Indeed, love figures so prominently in the
Christian way, that we commonly say “God is love”. Life is owned by this
eternal God of boundless love, and the value of life is determined by this love
- a love freely given, never earned, steadfast and not fleeting, dependent on
nothing but the grace of a God who loves humans even when they forget Him,
forget their families, forget themselves. Love, and meaning, endures no matter
what we do, what we are or what we become.
There was a church in Corinth filled with very productive
people. These first century Christians were very impressed with abilities such
as prophecy and speaking in tongues. Paul, however, knew the dangers in
attaching importance and meaning to ability. Knowledge, prophecies, tongues –
all of this, Paul said, will fade. The new Church needed something “more
excellent” on which to focus, something that would give life meaning and value,
something that would bind the church together as a body of equals instead of
just another club with greater and lesser members. For Paul, that “more
excellent” source of meaning was the love of God – agape – because even when all memory, knowledge and ability fade away,
Love endures (1Cor 13).
If you are currently taking care of someone with dementia,
you and your family will be challenged with some of the most complicated
decisions you will ever make. These decisions require some knowledge of not
only the medical aspects of the disease, but the ethical, philosophical and
theological issues that arise as well. Families have to wrestle with questions
they never thought they would ask – “Is the life that Dad lives worth living?”,
“How do we love this person that no longer acts like Mom?”, “When do we stop
trying to prolong my husband’s life?”, “Is a beating heart the same as being
alive?” In the next weeks, we will look at these complicated issues in order to
prepare both those with dementia and their caregivers for the tough challenges
they face. In order to do this, we’ll be using a variety of approaches,
including Bible study, review of current medical knowledge, basics of ethical
principles, discussion of cases and video segments from the HBO series, “The
Alzheimer’s Project”.
Welcome – I’m glad
you’re here.
[1] Cohen, Donna
and Eisdorfer, Carl. The Loss of Self - a family resource for the care of
Alzheimer's disease and related disorders. New York: W.W. Norton and
Company, 2001.
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