1. The Caring Odyssey The 7 th National Ecumenical Aged Care Chaplains Conference 2007 Michael Barbato barbato@iimetro.com.au

2. My country (Tanzania) did not send me to Mexico City to start the race. They sent me to finish. John Stephen Akhwari 1968 Summer Olympics Marathon

3. The carer’s marathon …..is a journey that is ¼ inch long and several miles deep John O’Donohue Anam cara

4. A family in crisis M & I have 3 adult children 35-30 years H has epilepsy since childhood vaccination A is developmentally delayed. December 2006 found to have cancer of the tongue. Investigated and treated in Sydney Prolonged convalescence- unable to swallow April-August: increasing pain August: M’s ‘heart stopped’  local hospital September: C  Sydney. Found to have infection in spine. 4 months antibiotics

5. The tasks Outer Caring responsibilities –cared-for –others –self Maintaining ‘precious normality’ Serve others Inner Emotional Mental Spiritual Existential

6. Uniqueness of the carer’s journey Context of illness Nature and duration of illness Relationship with cared-for Coping skills of carer Previous grief experience Other responsibilities Level (or lack) of support –professional –personal

7. “What word best describes the way you feel”? Tied down Frustrated Cheated Empty Daunted Tormented Devastated Exhausted Drained Challenged Scared Disbelief Ignored Like a carer not a wife Surprised Happy (and sad)

8. The conflicts and tensions husband/wifecarer caring responsibilitiesindependence rationalemotional despair meaning fears hopes unknownreality letting go reaching out sadnessgratitude

9. Other challenges The ‘Mars/Venus’ communication divide Coping with the grief of others Children Intimacy Keeping the balance: –living and dying –own life and caring –visitors and privacy Ambivalent feelings Accepting or asking for help

10. Doctor, patient and carer issues Doctor: Reaching consensus, uncertainty, having a plan rapprochement, stress Patient: Own death, unpredictability, physical comfort, continuity of care, coping, psycho-spiritual issues, conflict, growth, suffering, loss, reconciliation Carer: Loved one’s death, unpredictability, change in way of life, resources, stamina, psycho-spiritual, conflict, growth, suffering, loss, reconciliation Stuart Farber J of Palliative Care, 2003;6:19-31

11. Common concerns Starvation and hunger Dehydration and thirst Pain and suffering Time of death Nature of death Medication Euthanasia

12. The food myth

13. The way forward Significance of preparing food Significance of sharing food- sustenance for the body, mind and spirit Individual beliefs surrounding lack of food The ‘patient’ experience Options available Consensus

14. The fluid myth

15. Pain Common Often unrecognised Treatable Compounds suffering Treatment Effective Used to prevent pain Does not hasten death Is not euthanasia by default

16. Suffering Experience not a symptom Cannot be ‘relieved’ Needs to be lived Transformative and potentially healing

17. Other common concerns ‘Unconsciousness’ Is s/he suffering? How long? Will s/he suffocate or choke? Should I let the family know? What should I look for? What should I do?

18. Caring for self

19. I shall have the problem of dying but she will have the problem of going on with life (living) Grahame Jones Magnanimous Despair

20. Grief Unpredictable, variable and chaotic Vast range of emotions The laziness of grief- withdrawal and lack of interest Somatic manifestations ‘Don’t want to live but don’t want to die’ Protracted/complicated or pathological grief After death communication

21. The four tasks of mourning 1.To accept the reality of the loss 2.To experience the pain of grief 3.To adjust to an environment in which the deceased is missing 4.To keep the individual in my life but in a different way so I can go on living William Woden Grief Counselling and Grief Therapy, 1982

22. Grist for the Mill Lead us into darkness that we may find what lies concealed Michael Leunig The Prayer Tree

23. Being there The friend who can be silent with us in a moment of despair or confusion, who can stay with bereavement, who can tolerate not-knowing, not-curing, not- healing and face with us the reality of our powerlessness, that is the friend who cares. H. Nouwen Out of Solitude 1974

24. O man go die before thou diest, So that thou shalt not have to suffer when thou shalt die, Such a death that thou wilst enter into light, Not a death through which thou wilst enter into the grave Rumi 1207-1273