The Caring Odyssey

1
The Caring Odyssey

• The 7th National Ecumenical Aged Care
• Chaplains Conference 2007
• Michael Barbato
• barbato_at_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 carers marathon

• ..is a journey that is ¼ inch long and several
  miles deep
• John ODonohue
• 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 Ms 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 carers 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/wife carer
• caring responsibilities independence
• rational emotional
• despair meaning
• fears hopes
• unknown reality
• letting go reaching out
• sadness gratitude

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 ones death, unpredictability,
  change in way of life, resources, stamina,
  psycho-spiritual, conflict, growth, suffering,
  loss, reconciliation
• Stuart Farber
• J of Palliative Care, 2003619-31

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

• 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
• Dont want to live but dont want to die
• Protracted/complicated or pathological grief
• After death communication

21
The four tasks of mourning

• To accept the reality of the loss
• To experience the pain of grief
• To adjust to an environment in which the deceased
  is missing
• 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