Inpatient Palliative Care Family Caregiver

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

2. The main goal of the session Your logo here 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. Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

3. The guidelines for our group Your logo here • 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) Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

4. Introductions Your logo here • 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) Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

5. Overview of the session Your logo here 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

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

7. The Carer Kit Your logo here • 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’ Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

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

9. What is palliative care? Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

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

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

12. What do carers do? Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

13. Typical reactions when a relative requires palliative care Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

14. My options as a carer Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

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

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

17. Resources available Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

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

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

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

21. Tom and Mary Your logo here 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. Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

22. Tom and Mary Your logo here 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. Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

23. Tom and Mary Your logo here • 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? Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

24. Potential options Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

25. Typical signs when death seems near Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

26. When death occurs – recognising death Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

27. How might I feel after the death Your logo here • 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 • Relief • Guilt • Disorientation • Pre-occupation • Yearning • Fear • Anxiety • Numbness Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

28. Bereavement support Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

29. Topic Five – Self-care strategies to promote optimal wellbeing Your logo here 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

30. Impact on you Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

31. The positive aspects of caring Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

32. Caring for yourself Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

33. Caring for your relationships Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

34. Time to relax! Your logo here • 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 Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia

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

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