Self Leadership And Terminal Illness

Self Leadership and Terminal Illness Dr Robin McConnell http://leadership-learning.blogspot.com

The Setting for Self-Leadership: the pain diary

14 July 2004

Pain in the right shoulder at the back. I wanted to take painkillers.

5 August 2004

It took R___ seven minutes to lift my left leg into bed.

21 November 2006

Aroha decided to not have any more chemotherapy so we talked through the care process this would lead to.

21 November 2006

The specialist told Aroha that she had two basic choices: to have more chemotherapy, which had a low rate of success, or to forego chemotherapy and focus upon her quality of life. The Biopsy showed 35% leukemia.

http://leadership-learning.blogspot.com/2009/10/personal-perspective-on-terminal.html

The Setting for Self-Leadership: the pain diary cont’

14 July 2007

Blood test results – haemoglobin 83 and platelets nil.

13 August 2007

Aroha told me she did not want any more blood tests or transfusions.

29 August 2007

Aroha weaker. The doctor says she has fever and that could lead to a fatal infection. She is eating a minimal amount of food. If she stops this then she will die some 24-36 hours later. Today she could not get out of bed ti get to the sitting room. Judith, the Hospice Nurse, brought a commode. A new routine begins.

30 August 2007

We had an early morning 3:35a.m. stewed apple feast! Picked up music for “Julian of Norwich”. Aroha used the smaller commode but could not use a bed pan. Had the line put in for the Graseby pump.

1 September 2007

Aroha died at 6:05p.m. after a day of rasping breath and very little speaking. She simply sat up, strained against the line and looked right at me, then through me to her own distance….

We had bad days, particularly in October last year. Aroha’s farewells with Ben and Kate and Daniel, when she knew they would never see each other again, were absolutely distraught and cannot be recalled without an onslaught of tears. Conversely, Aroha had a wondrous day when Kate and Daniel arranged for her to receive the confidential note from the nurse who did their 20 week scan . Congratulations, the gender of your baby is.. Aroha was the only one to know, even the parents did not.

http://leadership-learning.blogspot.com/2009/10/personal-perspective-on-terminal.html The Setting for Self-Leadership cont’

I recall the night we lay in bed and Aroha said softly, gazing at the stars, “Soon I will be a star up there.” Another time she read a brief poem and she whispered, “I know how that feels.”

Boy behind the plow

He endured

behind the plow

scourged

by barbed wire wind

until his eyes

bled like tears

In the extreme gift of intimate time I washed her lovely body. It was the first time I had fully held my wife in my arms for some three months without her bruising or feeling pain. Knowing this was the last time we would be together I sponged those precious limbs repeatedly and dried and redried them. Her fingers and toes, which had become our single physical points of contact in her final weeks in bed, as any other touch was too painful, were soft and relaxed. Aroha was never other than lovely, in sickness or in health.

Diary extract… http://leadership-learning.blogspot.com/2009/10/personal-perspective-on-terminal.html The Setting for Self-Leadership cont’

We learned that you should not seek to have everything good that you want but seek to want everything good that you have . We grew to seek good in what lay in our grasp already. The good we had was immense and uplifting, whether it was the joy of each other’s presence, love of others, the rediscovery of a possession that became a refreshing joy, the garden arrays, the birds feeding...and as the pain and bruises magnified we became desirous of new messages passed through our touching fingers and feet, in cheek resting with cheek, and the utter joy of clasping hands - with mine always underneath because my hand now felt too heavy if resting on Aroha’s. Such was the pain she quietly bore.

Life goes on for each of us. Life is short. Live it fully. Embroider the fabric of time with vibrant colour. Do not rent it with regrets. I know friends, family and acquaintances will always recall this woman. They will never see her like again.

Setting and sharing the vision: patient and carer self-leadership

Self-leadership is the fulfilment of self-responsibility for developing a personal vision with the resultant realisation of goals and processes to realise this vision . A similar definition is “self-setting a vision and goals that lead to performance enhancing and self-fulfilling actions to realise the vision and goals, independent of a formal coach or mentor”. Terminal illness is a massive challenge to self-leaders. They are not fully in command of their lives and days because of the vagaries of illness and the realities of health professional appointments and engagements. Thus, the vision that frames the terminal period is critical in its sustenance of the unfolding days’ structures and processes. Underpinning the vision in any leadership venture is the leader’s philosophy. This was expressed in the philosophy below and could be summed up in the statement that “Our lives are time’s gift and we shall fully accept that gift.” The beauty, strength and continued grace of Aroha meant that her life, of whatever length, was a wondrous gift to time.

http://leadership-learning.blogspot.com/2009/10/reflective-perspectives-of-self.html

ATTITUDE

CANCER IS NOT SO MUCH AN ATTACK UPON OUR BODIES AS A NEW CHALLENGE FOR CELEBRATION OF THEM

ACCEPTANCE

YOU SHOULD NOT SEEK TO HAVE EVERYTHING GOOD THAT YOU WANT BUT SEEK TO WANT EVERYTHING GOOD THAT YOU HAVE

Setting and sharing the vision… http://leadership-learning.blogspot.com/2009/10/personal-perspective-on-terminal.html The setting of our joint vision for self-leadership was based upon our philosophy of attitude and acceptance…

Setting and sharing the vision cont'

Setting and Sharing the Vision

Mutual views of what we wanted to see over the remaining period

Goals, structures and processes

Goals

To live a ‘normal’ life - to live life as we wished

Organise gifting

Daily routines to be fulfilling

Positivity about medical visits and medical matters

Special Days to be enjoyed to the full

To live with leukemia and not against it

To accept that our challenge is in our dying and not in our death

http://leadership-learning.blogspot.com/2009/10/goals-structures-and-processes.html

Goals, structures and processes

Structures and Process to Achieve Goals

Planning each day for joy and normality

Making meals a feature of our days

Keeping a pain diary

Communicating frequently (or not) with friends and whanau (family)

Enjoying the experience of going to town as a frolic

Planning the funeral

Planning for Aroha’s physical absence in my life

http://leadership-learning.blogspot.com/2009/10/goals-structures-and-processes.html

A key goal was to enjoy time we had together. The decision to have a last shared holiday was illustrative of this.

Heart of the Grove in Rarotonga

My wife is swimming in Muri reef waters

her eyes are aglow in a give-no-quarter gaze

as she shakes water from her wondrous hair.

Leukaemia is a bastard of an enemy to fight.

I hate the obscenity of combat with an unseen enemy

and the blindness of a blood test next week that cannot

recognise the gift of this woman rising from the sea

Goals, structures and processes http://leadership-learning.blogspot.com/2009/10/goals-structures-and-processes.html

Love Song for Aroha

When you touch me lightly

a strand of wattle

stays the evening breeze.

When you smile at me

the green skins of flax

shiver deliciously at dusk.

And when you kiss my mouth

a night owl calls time

from a tracery of willows

To light the leading star

over slow coming dark.

Goals, structures and processes http://leadership-learning.blogspot.com/2009/10/goals-structures-and-processes.html Despite the inevitability of Aroha’s ‘slow coming dark’ we continued to write for each other as one process of maintaining our usual way of life…

Critical reflections

Underpinning the journey of terminal illness was the influence of Health Professionals and they are now considered in terms of that influence through their interaction and communication.

Be aware of the patient as a person

Be culturally appropriate

Consider the patient’s pride and dignity

http://leadership-learning.blogspot.com/2009/10/key-influences-impacting-upon-self.html

Critical reflections cont'

Clearly organise the communication e.g. telephone calls

Have a specialist with personal empathy and professional objectivity

Encourage not ‘What should we tell?’ but ‘How can we best tell this?”

Prepare the patient for a shock diagnosis and discuss the diagnosis

Do not give a specific time-span for a terminal illness.

Empathise - do not antagonise. This means taking time, which is precious for the nurse but is more precious for the patient

Critical reflections cont’

Xmas – a celebration of life for the patients (or any special occasion) needed support and understanding from hospital staff

Informing a patient of a negative result is a medical and compassionate action

Patient privacy and dignity is critical e.g. the unflushed toilet left continually by one patient could have been prevented by medical staff

The name of a patient is a personal identity statement – the cultural overtones of this, in terms of mispronunciation, are seen by some as akin to racism

For nurses and doctors and counsellors to be aware of the patient’s state is vital e.g. their level of acceptance, (in)valid perceptions and sense of reality. The medical staff awareness of these may be at dissonance with those of the patient and/or those around him/her