All of us live in communities. Communities are not just the geographic place we live. They reflect how we live, who we work with and who we spend time with. Often when people are seriously ill, they prefer to be at home. People they know can help provide their care and social support. This may be their GP and community nurses. It will also be their family, friends, neighbours and acquaintances.
In Australia, over 2 million people are carers. They provide care for children, or for adults and older people. Care is often provided for someone with a chronic or life limiting illness. Being able to stay at home with a serious illness usually requires the help of family members or friends. Without this help, care at home would be very difficult.
Caring for someone at home can be demanding. It can be even harder if the carer is older or has heath concerns as well. Some carers may have a job or a young family. Equipment and other items may be needed to help caring. It can change how the home looks.
An article in the Medical Journal of Australia, Home-based support for palliative care families: challenges and recommendations, describes many of the care roles:
- Personal care (washing and feeding)
- Domestic care (cleaning, getting meals)
- Auxiliary care (shopping, transportation)
- Social care (emotional support, conversing)
- Nursing care (giving medication, changing catheters)
- Planning care (coordinating support for the patient).
Caring can come at a cost to the caregiver. Carers often feel exhausted. They can be isolated. They may feel they have taken on too much. They may neglect their own health and wellbeing. They may not take work opportunities.
However, caring at home can also be rewarding. This can be true for the patient, caregiver and family. There are also supports for carers including carer respite and cover payments available through government agencies such as Centrelink.
People in the community can be involved by:
- Providing direct care for someone with a life-limiting illness
- Supporting people providing care and families
- Helping neighbours or work colleagues
- Volunteering in specialist palliative care services or local neighbourhood programmes
- Building partnerships between specialist palliative care services, primary care networks and community organisations
- Promoting end-of-life care and helping develop public policy.