End of Life Caregiving: Providing Palliative Care At Home

From Sunday 24^th of May to Saturday 30 May, it’s National Palliative Care Week in Australia. This is an annual occasion organised by Palliative Care Australia and supported by the Department of Health, to raise awareness and understanding about palliative care in the Australian community.

Palliative care is something that can be offered at any age to someone with a life-threatening or terminal illness, which may, or may not be imminent. Palliative care is something that many Australians will have come into contact with as their loved ones age and become sick. There are a number of end of life and palliative care services across Australia that offer care and support in this area. Some of these organisations support hospitals, hospices, and other establishments that offer end of life care. However, many people choose to remain at home for this part of their life as they know their surroundings and may feel that they have more privacy and freedom in their own space. There are organisations that can support this choice too.

For relatives or friends of the person who have taken responsibility for caregiving, offering palliative care at home can be challenging. Calibrini is just one provider of health and health related services to the community offering palliative care support services such as home visits and telephone support that can be accessed 24 hours a day. However, even with services like these, the demands that palliative care puts on an at-home caregiver can still be significant. As a carer, you can find a service provider for your situation through Palliative Care Australia.

If you are providing palliative care at home, it’s important to remember that it is normal to feel frustrated, tired, or upset at times and that there is always somewhere to turn if it all feels too much. 

What Kind of Palliative Care Can Friends & Relatives Assist With?

Caring for someone requiring end of life and palliative care is both physically and emotionally demanding. Carers will typically help their loved one to prepare and eat meals, organise their medications and assist them with organising and attending medical and other appointments. They may also be involved in the more intimate aspects of care, such as personal hygiene and bathing. Many carers also become an emotional support for their relative, as they are there to comfort and listen to them. A program, such as Compassionate Touch® can bring comfort and help to the person you are caring for as well as yourself.

Options for Carers Providing Palliative Care At Home

With so much to do and so much on their mind, carers often get little time to themselves and start to feel tired and overwhelmed. If you find yourself in this position, it is important to seek help. Your community palliative care team or your doctor can give you advice.

Knowing your rights and being aware of all the services that are available to you can also help caregivers providing palliative care. It is important that you:

• Have access to information that can assist you 
• Have access to palliative care support and advice
• Have formal or informal respite measures in place so that you can take a break from caregiving
• Know that you can say ‘no’ to things that you do not feel comfortable doing
• Know that you can choose to end your role as a caregiver at any time

Managing Multiple Caregivers

In some cases, other family members and friends may also be involved in providing care for your loved one. In this instance, it is important that everyone who is involved in the caregiving routine understands their own role and responsibilities in order to avoid misunderstandings. The following may help to ensure caregiving runs smoothly between a number of parties:

• communicating openly and honestly with all carers
• ensuring all carers know where they add value to the team
• having a plan in place that outlines the protocol for a crisis, detailing who would assume what role
• keeping a record of relevant health circumstances
• look to a professional healthcare team for additional support arrangements.

Looking After Yourself, Too

As a family caregiver, it is critical that you look after your own health and wellbeing. Remember that the support and care that you are able to give is dependent on a number of factors such as your own circumstances and availability, as well as the tasks that you feel comfortable doing.

Ensure that everyone involved in providing care is comfortable and happy to assume their roles. This can be done by having an open and honest conversation with family and friends about what each person is able to do, and is comfortable doing. You can then decide together on the best plan for your loved one’s care. 

Whatever role you assume, caregiving is an extremely demanding role; particularly when it involves providing palliative and end of life care. Remember that help and support is always at hand.

For more information on the support available for carers, see the following page from the Better Health Channel: Looking after yourself as a carer. If you want to find out more about the content of this blog, and how our courses or workshops may be able to help you as a carer, don’t hesitate to get in touch.