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

1. LOSS, DYING & DEATH:FACILITATING MEMORY WORKListening to and tellingStories of the heart

2. 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).

3. The experience of illness Tolstoy 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).

4. The experience of illness • 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).

5. The experience of illness 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)

6. “If you want to know me, you have to know my story, for my story defines who I am”

7. The narrative paradigm revisited A “Story” is: • Events • Linked in sequence • Over time • According to a plot As 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 story This 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.

8. The narrative paradigm revisited

9. The narrative paradigm revisited • Three narrative tools • The “not-knowing” position • Participative active listening • Conversational questions

10. Character: Stability & Direction The “unseen” in our lives gives stability and direction 10

11. 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

12. 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

13. Circumstances • Inner person • Values • Beliefs • Emotions • Thoughts Source of life Inner Person “Change of heart” A Spiritual Model Behaviour Life skills

14. 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.

15. 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?)

16. 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)

17. “Toxic faith” • Conditional love; • Instant peace; • Guaranteed healing; • Salvation by works; • A vengeful God; • Biblicism.

18. 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?

19. The health-Illness polarity Integration Disintegration Health Sickness SPIRITUALITY FAITH GOD-IMAGES MEANING PURPOSEFULNESS World View Culture Growth Change

20. A Model for integration Culture Society Helping Professions Scripture Faith Documents Healing Care Individuals and families The faith community

22. PHYSICAL PROGRESSION OF DISEASE Diagnosis Seriousillness Symptomatic Terminal Grieving

23. PHYSICAL PROGRESSION OF DISEASE Diagnosis Seriousillness Symptomatic Terminal Grieving Denial, anxiety, fear Security God’s compassion trust, commitment to support Empathy, assurance of God’s love

24. PHYSICAL PROGRESSION OF DISEASE Diagnosis Seriousillness Symptomatic Terminal Grieving Turmoil, fluctuating emotions Responsible living, guidance support when needed Strengthen faith and relationships, finding and living a vocation Companionship and guidance

25. PHYSICAL PROGRESSION OF DISEASE Diagnosis Seriousillness Symptomatic Terminal Grieving Isolation, loneliness mourning,losses, guilt (internal, external),anger, remorse Contact with others, forgiveness Belong to a ‘community’, acceptance, reconciliation (self,others, God) Communication, strengthen relationships, restitution

26. PHYSICAL PROGRESSION OF DISEASE Diagnosis Seriousillness Symptomatic Terminal Grieving Self rejection, hopelessness,worthlessness, depression Value, respect, dignity A hopeful and meaningful life Finding hope and meaning

27. PHYSICAL PROGRESSION OF DISEASE Diagnosis Seriousillness Symptomatic Terminal Grieving Fragile, uncertain, extreme fear Peace, acceptance, security for those left behind Peace, assistance succession planning Support “let go”

28. PHYSICAL PROGRESSION OF DISEASE Diagnosis Seriousillness Symptomatic Terminal Grieving Sadness, longing, anger, depression Grieving the loss, care for those left behind Comforting Continuing with life

29. 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

30. 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

31. Re-active / Pro-active engagement Circle of influence Circle of concern

32. 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)

33. Bereavement Types 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.

34. 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

35. 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)

36. “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)