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Support: what is offered, what is needed: Home

A long goodbye

Involved health professionals

Video Acknowledgments
Video Producer/DoP - Dan Sanguineti
Camera Operator/Assistant - Michael Watson
Video Editors - Peta Lioulios and Dan Sanguineti

About these activities & resources

The activities and resources for each module are suggestions. However, many of these are suitable for use with other modules, and you may choose to mix and match to suit your need.

Journal excerpt and associated resources for learning and teaching -module 7

Journal excerpt Points to consider & suggested activities

Journal Excerpt 7.1:

Mary's speech is getting more difficult to understand, particularly at morning and night. I'm getting advice and suggestions from a number of quarters in regards to the ventures [sic] of continuing to look after Mary at home vs. putting Mary in a nursing home. E.g. Nadia James suggested Malanni (aged care home)- close.  Could easily visit etc. Someone advised from … , Jess, family (Kaleb & Ava-Leigh). Emphasis seems to be on my needs - health etc.  I think Mary is not yet ready for residential care.  Her quality of life is best served at home.  I must take a more relaxed attitude and put Mary's interests first. Take each day as it comes and the pursuit for what may happen in the future.

Leave doing some activities till later. Bridge, dancing, golf - at least on a ... basis.  Mary's mobility is slowly deteriorating which could be a problem in the future.

7.1 Points to consider:

Decision-making for the future–
– Explore/understand own belief systems
–Family involvement:
           –is it a decision to be left to
             the primary carer?
– when considering future planning,refer to tasks of mourning iii. ‘Adjusting to an environment from which the deceased is missing’

Communication is critical–
–what role does the professional
  have?
–need for professionals’ honesty
–what would the professionals say
  and do to support Ed?

7.1 Suggested Activities:

Jigsaw classroom

Research:
1. Understanding not letting go
–what does it mean?
–what is the long-term impact?
–impact on family (what is left of
  the family? family dynamics) 
–informed decision-making

2. Providing good support
–role of the support worker
–informed
–non-coercive approach
–relating it to specific context
  (Ed)
–knowledge of incapacity/capacity of
  carer (over time /during the
  process)

Journal Excerpt 7.2:

21 April 2009
Unable to wake Mary this morning.  Eyes open a couple of times.  Shania. and I gave bed wash and change [sic] pull-up pants.   Lacie and Rebekah. visited. Suggested ambulance to hospital.   I suggested we consult Dr Nadia  James's opinion first.   Nadia agreed to visit Mary after morning practice. Arrived 3pm.   Decided should go to hospital by ambulance at 4pm.

Visited 5 - 7 pm.  Looking for 'something to treat'.  On drip, giving oxygen through mask, urine taken.  Further tests tomorrow.  Orlando, Kalab and Ava- Leigh told.

Had talk to Dr Darcy. Evans.  Female nurse, Belinda, and Male nurse, Jack. Discussed continuing life support if all possibility of recovery has passed. (Continuing equivalent to 2-3 days).]

Explained that Mary and I had discussed this matter.  We chose to discontinue support past a reasonable stage.

7.2 Points to consider:

When does the Act of Dying begin?

Generational approach to health care
–what information?
–when/what is appropriate
  delivery?

–who are the stakeholders/who
  should information be offered
  to?

Advocacy
–what does the research say?

Advanced care plan
Organ donation

The model for nursing

At what stage/time is it appropriate to begin discussing palliative care?

Journal Excerpt 7.3:

Surprised to be having this discussion at this early stage. Darcy. indicated that this kind of discussion was routine as it was preferable for the medical team to know the thoughts of family members before commencing normal treatment regime.

Tuesday 10:30 pm
Phone call ... Dr Kaur, hospital. Asked about Mary's past medical history and behaviour over recent past. Mentioned that Dr Kilbee was on leave.  Dr Shay still at hospital.

Mary will be admitted - check tomorrow where she is located and who her Dr is.

Thursday, 23 April 2009
Mary in hospital. Awake but not talking. Maybe she can hear and maybe recognise family. Ellena, Lana phoned, Lailani called.

Orlando, Kaleb visited hospital.  Spoke to Ava-Leigh. and Maree.  Someone (Adrienne?) left flowers. Phillipa came 2 hours - phoned her tonight.

Thursday, 23 April 2009
Mary 'semiconscious' today.  Still nil by mouth.  No further draining of lungs - cough not evident. Examined by 'Conner'. (Speech Therapist) no swallowing problem.  Decided to continue nil by mount [sic]. Mikhaela. (nurse)  put in new catheter in arm, and re-started drip. 

Roxanne., Dr. Somme, ...  Hospital registrar.  Had good talk. Cause of Mary's condition still elusive. Admits to puzzle. Tested, brain, chest, urine, skin - nothing positive.  Will continue anti-biotics for 2-3 days.  Dementia patients sometimes act "differently".

Orlando, Aiden, Oodette and Hannah. visited.  No positive signs of recognition.

Sunday, 26 April 2009
Mary improved today. Showed signs of recognition of people around her e.g. Nurse, Beatrix, Hannah and family.  Seemed to be trying to talk e.g. 'go home' = I want to go home.

Monday, 27 April 2009
Mary showed some improvement today.  Spoke a few words to nurse. Tried to speak throughout day. Looked more comfortable.

Maree and self visited during day.  Kalab at night.  Beatrix Matthews. called.

Tuesday, 28 April 2009
Conference between Dr ... Sofit, Roxanne (registrar), Orlando, Maree, Kalab and self.

7.3 Points to consider:

Who and how many involved in Mary’s care

‘Outside’ intervention and sidelining the primary carer

Communicating care to the family
–who is in charge?
–who communicates?
–consistent messaging
–what is the nurse’s role?

Type of Support & Appropriate Support:
–culturally
–generational
–intergenerational