Caring for Someone who is Terminally Ill: Palliative Care Support
Coping with the changes, stress and grief over someone who is dying, can be overwhelming for Carers. Palliative care (medical care that relieves pain, symptoms and stress caused by serious illness) services can provide support, information and help for Carers in this situation.
Caresearch is a palliative care support website that provides practical information on resources for Carers. Topics include "living with illness", "how to care", and "bereavement, grief and loss". The website also has a checklist which Carers can use to work out what support they need and where to go for help. Lists of groups and services are also available.
Advance Care Planning
Making decisions about health and medical treatment can be difficult for Carers, especially if these decisions need to be made at a time when someone is about to die. Even though most people find these issues difficult to talk about, it can be helpful to discuss care and treatment plans for the person for whom you care with that person and health staff, well ahead of this time. Thinking about how everyone concerned (the person, Carer and other people close to the person who is dying) might want to manage these issues at this time is very important. Simply asking the person for whom you care to tell you what would be important to them, and how they want to be treated at the end of their life, can help prevent problems at the time of death.
These discussions about the wishes of the person can be especially important if you, as a Carer, are asked to make decisions about the care and treatment of the person for whom you care when they can no longer make decisions for themselves. Having these discussions beforehand can help to avoid disagreements when the person is receiving palliative care and/or is about to die.
You may hear the term "Advance Care Planning" used. An "Advance Care Directive" is the process of formally writing down the wishes of the person; it is sometimes also called a "living will".
An important part of the decision-making process when someone is dying is to make sure that the person has the capacity to make those decisions about their care and treatment.
If the person you care for is no longer able to make or communicate decisions to their doctor (or other health staff), the doctor will need to ask the Person Responsible about their care and treatment; The Person Responsible, who is often the Carer, will then make decisions on their behalf. The Person Responsible is not necessarily the patient's next of kin. See Important Links for more information or go to Guardianship and Financial Management under Help for Carers on these pages.
If the person who is dying no longer has the capacity to make decisions and there is conflict and/or confusion about the decisions to be made, an Enduring Guardian may need to be appointed if this has not already been done. Any person can appoint their enduring guardian at any time whether they are ill or not, providing they have the capacity to do so. Their enduring guardian will then have authority to make health (including medical and dental treatment) and lifestyle decisions on the person's behalf if/when they do not have capacity. See Important Links.
Different people in different situations can assess a person's decision-making capacity. An easy to read booklet on how to determine capacity called the Capacity Toolkit - see Important Links
When Someone Dies
The death of someone, even if expected, is still a shock. If this is the first time you have had someone you know die, it can be helpful to know what things to be done immediately after the death. It can also help to know what steps to take to plan the funeral and how to find support for yourself or other family members afterwards.
If the Death Occurs In a Nursing Home or a Hospital
The nursing staff will tell you the news and will wash and prepare the deceased in preparation for you to say goodbye. Someone will stay with you while you see the deceased, if you wish. If you haven't had someone die before, you can expect that they will appear to be quite pale and they may feel a bit waxy and cool to touch.
You can also ask for private time alone with the person to say goodbye, if you wish. Staff can also call a person to offer spiritual support, if this is something you would like.
The nurses attending to the person who has died will arrange for a medical officer to work out the cause of death and write this on a certificate. This is the certificate collected by the funeral director to make sure the person's death is entered at the Registry of Births, Deaths and Marriages. If the cause of death is unknown or suspicious, then the matter may be referred for an autopsy or to the Coroner.
Planning a Funeral
The Department of Fair Trading has developed an audio guide to help with planning a funeral. See Important Links.
The Funeral Director's role is to help you plan the kind of funeral service you would like, and to make sure your practical needs and the legal requirements are met eg:
After The Funeral
After contacting family and friends about the death, you will also need to tell any services previously used by the deceased that the person has died. You can use the "Who to Notify Checklist" as a starting guide for who you might need to tell. See Important Links.
Although you may still be grieving, practical matters such as finances will also need your attention. You may now be eligible for government benefits, or if you and the person who has died were receiving joint payments, these may now need to be adjusted. The Moneysmart guide has practical advice. See Important Links
Dealing with Grief
Grieving can be difficult for anyone. As a Carer you may have very mixed feelings. You may feel relief if the person suffered for a long time or if your relationship with the person had been difficult .You may feel guilt if you feel you should have done more to help the person. There are no right or wrong ways to grieve. Whatever you feel, you may benefit from some friendly support, not just in the weeks immediately after the funeral, but in later times ahead such as anniversaries of the person's death or on family occasions.
When someone close to you dies, you may feel your whole world has changed. People grieve differently - some will cry and want to talk; others may be silent and prefer to keep themselves busy. Men and women may grieve differently as they come to terms with the changes in their lives. Eighty to eighty five percent of grieving people find that with support from family and friends and their own resources, they can gradually learn to live with their loss, and don't need professional help. If you need help, contact the National Association for Loss and Grief (NALAG) on 6882 9222 or The Compassionate Friends NSW on 1800 671 621 (if your child has died), or see Important Links
www.fairtrading.nsw.gov.au/ftw/About_us/Video_and_audio/Your_home_your_car_your_money.page and scroll down to Planning for later life