LOSS, DYING & DEATH: FACILITATING MEMORY WORK Listening to and telling Stories of the heart LOSS, DYING & DEATH: FACILITATING MEMORY WORK Listening to

LOSS, DYING & DEATH:FACILITATING MEMORY

WORK

Listening to and telling

Stories of the heart

The experience of illness

• Ivan’s turmoil started with his first visit to the doctor, who tries to evade the truth with vague comments. The doctor said that this and that symptom indicated this and that was wrong with the patient’s inside, but if this diagnosis were not confirmed by analysis of so-and-so, then we must assume such-and-such. If then we assume such-and-such, then ... and so on. To Ivan Ilyich only one question was important: was his case serious or not? But the doctor ignored this misplaced inquiry

Leo Tolstoy, The Death of Ivan Ilyich. 1960:127).

The experience of illnessTolstoy portrays the actual crisis of illness as

follows:• Everything in the streets appeared

depressing to Ivan Ilyich. The sledge-drivers looked dismal, so did the houses, the passers-by and the shops. And this pain, this dull gnawing ache that never ceased for a second, seemed, when taken in conjunction with the doctor‘s enigmatical utterances, to have acquired a fresh and far more serious significance. With a new sense of misery Ivan Ilyich now paid constant heed to it.

(1960:128).


• Ivan’s wife makes him feel that his condition is his own fault and that he irritates her. This now is the deepest pain in Ivan’s suffering.

• And he had to live thus on the edge of the precipice alone, without a single soul to understand and feel for him.

(1960:132).


Tersely Tolstoy summarises the suffering of illness: • What tormented Ivan Ilyich most

was the pretence, the lie, which for some reason they all kept up, that he was merely ill and not dying, and that he only need stay quiet and carry out the doctor‘s orders, and then some great change for the better would result. But he knew that whatever they might do nothing would come of it except still more agonizing suffering and death

(1960:142)

“If you want to know me, you have to

know my story, for my story defines

who I am”

The narrative paradigm revisitedA “Story” is:• Events• Linked in sequence• Over time• According to a plotAs a guide, I want to help the person to:• Tell their story• Discover the plot of the story• Identify unique outcomes in their story• Develop this into a new storyThis training will empower you to:• understand and tell your own life story better• help others to tell their stories• decide on new outcomes for their own stories• help others to change a problem saturated story

into a growth directed outcome.

The narrative paradigm revisitedFocus

The problem saturated story / The

story of need

The story of the past

The clouded future story

The re-interpreted story of the past

The imagined story of the future

Questions

Who am I?

Where have I come from?

Where am I going?How will I get there?What challenges do I

have to face? What help do I need?

What will it be like when I get there?

The narrative paradigm revisited

• Three narrative tools

• The “not-knowing” position• Participative active listening• Conversational questions

10

Character: Stability & DirectionCharacter: Stability & Direction

10

The “unseen” in our lives gives stability and direction

A Spiritual Model

• The Lord says: ”I will condemn those who turn away from me and put their trust in human beings, in the strength of mortals. He is like a bush in the desert, which grows in the dry wilderness, on salty ground where nothing else grows. Nothing good ever happens to him.

Jeremiah 17:5-6

A Spiritual Model• The Lord says: But I will bless the

person who puts his trust in me. He is like a tree growing near a stream and sending out roots to the water. It is not afraid when hot weather comes, because its leafs stay green. It has no worries when there is no rain; it keeps on bearing fruit. Who can understand the human heart? There is nothing else so deceitful; it is too sick to be healed. I the Lord, search human minds and test human hearts.

Jeremiah 17:5-10

A Spiritual ModelCircumstances

Source of life

Behaviour

Inner Person

“Change of heart”

Inner person• Values• Beliefs• Emotions• Thoughts

Life skills

Confrontation of world view

Four experiences are predominant in serious illness:

• The impact of loss;• The expression of extreme

emotions;• Destructive patterns of

thinking; • Severe doubt and

despondency.

Confrontation of world view

Core assumptions in a person’s conceptual system are disrupted in serious illness:

• The world is benevolent;• Events in the world should be

meaningful;• The self is positive and worthy. (I

therefore don’t deserve it);• God is fair and in control (How

can He allow this?)

The predicament of being ill: The suffering in suffering

• Illness as a functional need (redundancy)

• Illness as a relational predicament (isolation and rejection)

• Illness as a physical predicament (pain)

• Illness as an existential predicament (meaninglessness and despair)

• Illness as a psychological predicament (torment/distress)

• Illness as a religious predicament (doubt and a crisis of faith)

“Toxic faith”

• Conditional love; • Instant peace; • Guaranteed healing; • Salvation by works; • A vengeful God;• Biblicism.

Questions

• Is it possible to live meaningfully with vital hope, despite suffering, sickness and death?

• Can affliction be experienced as a challenge and a task to be wrestled with and worked through?

• Is it at all possible that ministry to the sick can create a zest for life and a sense of victory?

The health-Illness polarity

Health

Sickness

Growth Change

Integration Disintegration

SPIRITUALITYFAITH

GOD-IMAGESMEANING

PURPOSEFULNESS

Culture

Wor

ld

View

A Model for integration

Individuals and families

Scripture Faith

Documents

Culture Society Helping

Professions

The faith community

Healing

Care

Phases of disease Emotional experience

Human need Focus of counselling

Spiritual focus

1. Diagnoses Denial, fear, anxiety

Security Empathy God’s compassion (Trust)

2. Symptomatic phase(Health impairment – Stillfunctioning)

Isolation, loneliness, mourning

Connection Communication & relationships

Belonging to a healing community, acceptance

Guilt (Internal & External) remorse, anger

Forgiveness Restitution Reconciliation (with self, others and God)

3. Severe healthimpairment – functioning severely impaired)

Self-rejection, depression, hopelessness, worthlessness

Dignity Hope and meaning

A hopeful and meaningful life

4. Terminal phase Wasting away, uncertainty, fear

Peace and acceptance

Letting go Peace

5. Bereavement Sadness and longing, anger, depression

Grieving the loss Acceptance of loss, continuing with life

Comforting

Diagnosis Symptomatic Serious illness

Terminal Grieving

PHYSICAL PROGRESSION OF DISEASE


Terminal Grieving


Emotional

Needs

Spiritual focus

“Being” focus

Denial, anxiety, fear

Security

God’s compassiontrust, commitment to supportEmpathy, assurance of God’s love


Terminal Grieving


Emotional

Needs

Spiritual focus

“Being” focus

Turmoil, fluctuating emotions

Responsible living, guidancesupport when neededStrengthen faith and relationships, finding and living a vocation

Companionship and guidance


Terminal Grieving


Emotional

Needs

Spiritual focus

“Being” focus

Isolation, loneliness mourning,losses, guilt (internal, external),anger, remorse

Contact with others, forgivenessBelong to a ‘community’, acceptance, reconciliation (self, others, God)

Communication, strengthen relationships, restitution


Terminal Grieving


Emotional

Needs

Spiritual focus

“Being” focus

Self rejection, hopelessness,worthlessness, depression

Value, respect, dignity

A hopeful and meaningful life

Finding hope and meaning


Terminal Grieving


Emotional

Needs

Spiritual focus

“Being” focus

Fragile, uncertain, extreme fear

Peace, acceptance, security for those left behindPeace, assistance succession planning

Support “let go”


Terminal Grieving


Emotional

Needs

Spiritual focus

“Being” focus

Sadness, longing, anger, depression

Grieving the loss, care for those left behind

Comforting

Continuing with life

Caring for life (Practical, emotional, relational)

• To place the individual in his world• To clarify the present state of one’s affairs• To promote self-awareness and self-image• To determine the influence of one’s background• To guide the individual to take an overview of his life• To help one understand one’s legacy from the past• To clarify values and priorities• To explore internal sources of identity (e.g. beliefs,

values, interests, worries and ambitions)• To identify personal strengths, handicaps, joys and

sorrows• To identify physical, social and emotional obstacles• To initiate decision-making and problem solving• To create a vision and a future in spite of a life

threatening disease

Caring for life (Spiritual)

• God’s compassion and our security• Experiencing connection and

belonging to a healing community• Forgiveness and reconciliation• The dignity of a meaningful and

hopeful live• Finding peace and acceptance • Positive living with life threatening

disease

Re-active / Pro-active engagement

Circle of concern

Circle of influence

The mind-body connection

• Pain is perfect mystery, the worst of evils, and when excessive, overturns all patience. (Milton)

• Our greatest enemy is not disease, but despair! (Anon)

BereavementTypes of bereavement:• That suffered by the dying person himself;• Loss through sudden, unexpected death – e.g. a motor

accident or heart attack;• An expected death, but unprepared for either due to lack of

time or to an inability or a refusal to enter into any conscious anticipatory grief work;

• An expected and long prepared for death. The grief is being worked through and one of two things may occur: mourning may be completed pre-death, whereupon the mourners withdraw their emotional investment from the dying one, leaving him/her isolated;

• grief-work is partially done and this is helpful to the bereaved after the death.

• The bereavement after a suicide, which is placed separately from (2) (loss through sudden death) because the grief-work is so much more intense, and there are other qualitative differences.

• Grief at the loss of a body part, a marriage, significant work, a home, etc.

Bereavement and life maps

• Facilitating acceptance of the reality of the loss that will or has taken place.

• Creating a framework for the need to live with memories of the deceased.

• Facilitating the need to bring feelings into the open, to be understood and dealt with and to gain insight into strange feelings

• Creating a context for finding meaning• To remain in touch with one’s own sense of

integrity.• Creating a network that support growth

Caring for life

• A Companion in the life journey.

• Caring for life is an attempt to create a paradigm shift in care giving from a predominant focus on our “knowing and doing” functions to our “being” functions.

DJ Louw (Cura Vitae, 2008:7)

“Being” hope and healing• Being hope and healing is about a

theology of life and the healing of life from the viewpoint of Christian spirituality. It is about how new life in the risen Christ and the indwelling presence of the Spirit can contribute to the empowerment of human beings. It is about hope, care and the endeavour to give meaning to life within the reality of suffering, our human vulnerability, and the ever-present predicament of trauma, illness and sickness.

DJ Louw (Cura Virae, 2008:7)