1. Inpatient Palliative Care Family Caregiver Group Education Session Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Your logo here

2. The main goal of the session Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia The main goal of this education session is to provide you with strategies and resources that will allow you to best support your family member and take better care of yourself. Your logo here

3. The guidelines for our group Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Limitations of a ‘one-off’ education session Not a counselling session Respect each other’s unique experience and values Privacy is also respected – no obligation to share Confidentiality is observed Feel free to take ‘time out’ if you are feeling upset Questions are invited at the end of each topic (or later in a suitable setting) Your logo here

4. Introductions Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Please briefly introduce yourself to the group E.g. first name, relationship of the person you are caring for and what you like to do in your spare time (when you have some) Your logo here

5. Overview of the session Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia To inform primary family carers about: 1. What is palliative care? 2. The typical role of a family carer 3. Support services available 4. Preparing for the future 5. Self-care strategies for optimal wellbeing Your logo here

6. Getting started Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Describe your biggest current challenge or concern related to your caring role Your logo here

7. The Carer Kit Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Palliative care service brochures A guidebook A copy of today’s presentation A relaxation CD (Commonwealth DoHA) Fact sheets on ‘reducing stress’ and ‘sleeping well’ Your logo here

8. Topic One – What is palliative care? Objective: To inform family carers about palliative care Your logo here Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

9. What is palliative care? Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Aims to help people with a life-threatening illness Family-centred support Symptom management End of life care Psychological, social and spiritual care Bereavement support Refer to page 9 of the guidebook Your logo here

10. Topic Two – The typical role of a family carer Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Objective: To explore the typical role of a family carer when a family member is an in-patient receiving palliative care Your logo here

11. Who is a carer? Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Someone giving support to a person who is unwell … Carers can be a … Relative Spouse Friend Refer to page 7 of the guidebook Your logo here

12. What do carers do? Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Emotional care – listening and being there Practical care – meals, medications, bathing, transporting to medical appointments It depends on what you feel comfortable doing If you are unsure, ask a nurse Refer to page 9 of the guidebook Your logo here

13. Typical reactions when a relative requires palliative care Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Can I do this? And for how long? What skills do I need? Who can help me? What can I expect? What resources are available? Refer to page 7 of the guidebook Your logo here

14. My options as a carer Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Access information to assist in care Seek financial help Say ‘no’ to things you are uncomfortable with Access additional support: e.g. house cleaning, meals on wheels, interpreter services, extra nursing input etc. Seek further opinions Refer to page 12 of the guidebook Your logo here

15. Topic Three – Support services available Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Objective: To inform family carers on the services available within the in-patient unit and the support services and resources available within the community. Your logo here

16. Support services available Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Services available within the inpatient palliative care unit Services and resources within the community Your logo here

17. Resources available Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia GP Palliative Care Australia www.pallcare.org.au Support groups Local council Carers Resource Centre 1800 242 636 Carer Respite Centres 1800 059 059 Refer to pages 9-12 of the guidebook Your logo here

18. Other services Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Health professionals (dietician, naturopath etc.) Alternative and complementary therapies Private nursing agencies Private food services Refer to page 27 of the guidebook Your logo here

19. Legal matters and other practical things to consider Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Preparing a will Power of Attorney Advanced care decisions Funeral arrangements Financial matters Carer payment Refer to pages 32-33 of the guidebook Your logo here

20. Topic Four – Preparing for the future Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Objective: To inform family carers about: 1. potential future site-of-care options and 2. what to expect when a person is approaching death Your logo here

21. Tom and Mary Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Tom is 69 and has lung cancer. All active treatment has stopped and Tom is receiving palliative care at the local palliative care unit. He is sleeping a lot and his appetite has decreased. The staff say he is declining and may only have a week or two to live. Tom wants to go home. Your logo here

22. Tom and Mary Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Mary is 65 and is Tom’s wife of 42 years. They have two children together and three grandchildren. Mary has been involved in caring for Tom for over a year. It is hard work and she is tired. Now, Tom requires more care from her than when he went in to hospital (to have his pain medication reviewed). She is concerned about him coming home. Your logo here

23. Tom and Mary Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia What do you think Mary’s concerns are about Tom coming home? What might Tom’s concerns be about staying in the hospital? What might be some possible compromises or solutions? Your logo here

24. Potential options Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Explore additional options for home care and resources available Family meeting to explore and obtain information Explore alternatives to care at home: inpatient palliative care unit, hospital, residential aged care facilities Refer to pages 29-32 of the guidebook Your logo here

25. Typical signs when death seems near Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Large portions of time in bed Unable to move from bed or chair without help Difficulty swallowing solid food Not talking much Occasional confusion Restlessness Changes in breathing Refer to p. 47 of the guidebook Your logo here

26. When death occurs – recognising death Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia If in hospital: let a health professional know If at home: ‘there is no rush’ to do everything Inform close relatives Call the palliative care service and they can assist you in taking the next steps Doctor/GP needs to be contacted to arrange death certificate Refer to pages 52-53 of the guidebook Your logo here

27. How might I feel after the death Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia You may feel: Sadness Distress Shock Anger Resentment Physical symptoms ie. shaking, trembling, hot/cold or both, calmness, palpitations, fatigue, hear noises or have vivid dreams Refer to pp.53-54 of the guidebook Your logo here Relief Guilt Disorientation Pre-occupation Yearning Fear Anxiety Numbness

28. Bereavement support Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Everyone experiences grief differently It’s okay to seek support at any time Contact the bereavement counselling service or your GP for support Refer to page 54 of the guidebook Your logo here

29. Topic Five – Self-care strategies to promote optimal wellbeing Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Objective: To inform family carers of the impact of being a carer and to discuss strategies for how family carers can look after themselves at this time Your logo here

30. Impact on you Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Being a carer can be challenging Some carers feel as though they get little time for themselves and may get quite tired Some carers feel overwhelmed It can be physically and emotionally draining The demands of caring can cause stress Refer to pages 15-16 of the guidebook Your logo here

31. The positive aspects of caring Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Remind yourself … Your support is helping your relative There are people to help you You are doing the best you can You can arrange to do something that makes you feel good Refer to page 16 of the guidebook Your logo here

32. Caring for yourself Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Get some exercise Get enough sleep Maintain a healthy diet Do something for yourself every day Accept help Juggling needs for you and for your relative Refer to pages 35-38 of the guidebook Your logo here

33. Caring for your relationships Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Keep communication open and honest Humour … look for the funny side of things where possible Work at things together Consider showing the book “Supporting a person who needs palliative care” to your relative Refer to pages 38-40 of the guidebook Your logo here

34. Time to relax! Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Plan to do something enjoyable Talk to someone you feel comfortable with Look for the positives Take a break from the caring role Perform relaxation exercise Refer to pages 40-42 of the guidebook Your logo here

35. And lastly … Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia The palliative care team’s aim is to support you Questions? Your logo here

36. Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia Phone+61 3 9416 0000 Fax+61 3 9416 3919 Emailcentreforpallcare@svhm.org.au Webwww.centreforpallcare.org PO Box 2900, Fitzroy VIC 3065 Australia 6 Gertrude Street, Fitzroy VIC 3065 Australia Your logo here Funding for this project was provided by the NHMRC Palliative Care Research Grants Round 3, No. 447713.