Caring for someone with a life-limiting illness is one of the most wonderful and important roles a person can take on. This is true for both the carer and their loved one. While caring can createdeep meaning and strengthen relationships, it can also be physically, emotionally and financially demanding. Carers may provide ongoing support, advocacy, and comfort at times, often balancing multiple responsibilities alongside their own needs and desires.
In Queensland, a wide network of support exists to help carers. Knowing how to access these services, or what to expect in your role, can make the experience feel less overwhelming. PalAssist recognises the crucial role of carers right across Queensland. We provide free information, advice and support, via phone and online access, and are staffed by health care professionals with training in palliative care. Call us for a chat, any time between 7am and 7pm, 7 days a week, on 1800 772 273.
What carers do
Carers are often partners, family members, close friends or neighbours who step in when someone can no longer manage on their own. This may be planned or unplanned. Care is not necessarily provided in the same location as the person you are looking after and can be done from another location altogether. Carer responsibilities can be varied and may include some of the following:
- Assisting with daily personal needs, such as bathing, dressing, toileting and preparing meals
- Managing medication and monitoring symptoms, including helping to administer, access and support ongoing management plans
- Coordinating medical appointments and communicating with health professionals
- Providing transport to hospitals, appointments or community services
- Offering emotional support, reassurance, and companionship
- Helping practically with household chores, shopping or maintenance
- Acting as an advocate for their loved one’s wishes and needs
The carer role is broad and can vary considerably over time. Care needs may increase, relationships can change, and external influences can force variation. Carers often take on duties and other tasks with little or no training. That is why navigation, guidance and support are so beneficial in sustaining this important role.
Challenges carers may face
Caring for a loved one at the end of life can be extremely rewarding, but it is also one of the most demanding roles a person can hold. People may offer help with a task or support at one point in time, but care needs can evolve and grow quickly. Safety, finances, time constraints and their own needs, may also develop as challenges for carers over time. Carers often face:
- Physical strain- lifting, bathing, or repositioning someone can be physically gruelling
- Emotional stress- witnessing a loved one’s decline and managing anticipatory grief
- Financial pressure- reducing work hours or leaving employment to provide care
- Social isolation- limited time for friends, family, hobbies, or normal routines
- Uncertainty- worrying about whether they are ‘doing the right thing’ in providing care or making a decision
Research shows that many carers neglect their own health and psychological needs, which can lead to stress and burnout. Recognising these challenges, then reaching out, are the first steps to getting help.
Support available for carers
Carers in Queensland bring all sorts of backgrounds, experiences, situations and beliefs. Depending on your requirements, multiple supports are available:
- Carer Gateway offers free counselling, carer coaching, and skills courses. They may also be able to help with planned and emergency respite.
- Carers Queensland provides advocacy, information and support programs tailored to the needs of carers.
- PalAssist Services Directory lists support services, respite programs, financial advice, and community organisations that can help carers across Queensland.
- Hospitals, and their palliative care teams, often have social workers who can connect carers to help, such as support groups or financial assistance programs.
Accessing support as a carer is not a weakness. It makes caring more sustainable over time and helps prevent exhaustion.
The importance of respite care
Respite care provides carers with the opportunity to rest and recharge. It can also allow them to attend to their own needs, like medical appointments, spend time with family and friends or just be able to stop. It can take place in several settings, including:
- At home- a respite worker may come in for a few hours
- Respite day centre-dedicated space where the person being cared for can socialise and participate in activities
- Hospice- short-term care is provided, including for symptom control or end-of-life care
- Admission to a residential aged care facility- for a brief visit or slightly longer stay
Respite can be planned or possibly arranged in emergencies. Carers should not feel guilty about taking respite. It is essential for their health and allows them to continue providing quality care. Financial support and respite subsidies may be available to access respite care.
Emotional wellbeing for carers
Caring can take a significant emotional toll. Carers often experience feelings of sadness, anxiety, guilt and anticipatory grief. Talking to someone- professional or with personal experience- can help. Some options available to carers include:
- Carer support groups- provide a space to connect with other carers in similar situations. These may be held online or in-person, depending on the group.
- Counselling services- dedicated carer-focused support from professionals, such as through Carer Gateway.
- Helplines- various available, along diagnosis-specific or generalised need, such as Cancer Council Queensland on 13 11 20
- Crisis and mental health helplines- available for self-referral, often after-hours, such as Lifeline or Beyond Blue
You can also speak to your own GP for advice or to get a referral for support. Prioritising mental health enables carers to continue in their important role with resilience and may help to manage carer stress and burdens.
Financial and practical support
Many carers face reduced income, additional expenses or being out-of-pocket. In Australia, financial support may be available through Services Australia, including the Carer Payment and Carer Allowance. Information about eligibility is available on the Services Australia website.
Carers may also be eligible for practical help and support through various national services, depending on their situation. The National Disability Insurance Scheme (NDIS) may be available if the person you are caring for has a disability. Where the person being cared for is over 65 years old, My Aged Care may provide various types of support. It may be beneficial to obtain consent to act as a representative for the person you care for. Speak to the social worker on your palliative care team, or PalAssist can help guide carers to the available options and eligibility criteria.
Working with the care team
Carers are an essential part of ongoing medical care and are vital to the palliative care team. Doctors, nurses and allied health professionals rely on carers to provide daily observations, help manage plans, feedback concerns and communicate their loved one’s needs and wishes.
Ensuring carers and the care team have clear and effective communication, is essential for managing symptoms, resolving concerns and ensuring safety. Ask questions where you have them or invite training in specific tasks if needed. Clarifying and requesting guidance is encouraged as palliative care teams are there to support carers as much as their patients.
Plan meetings with care teams around care needs. This may be requesting longer appointments or scheduling at specific times of day where fatigue is less of an issue. Prepare with a list of questions or concerns and take a notepad along. You may find some ideas to get you started at ‘Asking questions can help’ (Palliative Care Australia download) or Question Prompt List (Carer Help). There is often so much information shared both ways, and this ensures nothing is overlooked.
Taking care of yourself
Carers often put off their own needs, but self-care is essential. By taking care of yourself as well, you will be better able to fulfil the carer role over the long term. This may include:
- Eating quality meals and keeping up water intake throughout the day
- Maintaining and planning your own medical check-ups and appointments
- Taking breaks during the caring period, whether just a stroll in the yard or physically sitting down for a meal
- Asking for and accepting offers of help from friends or family
- Maintaining social contact with people outside the care environment, such as through phone calls or short visits
- Scheduling protected time for rest, hobbies, or simply being away from caring responsibilities
Where to find help
Carers are the backbone of best palliative care. With the right information, services and support, they can balance their caring role with their own wellbeing and ensure their loved one receives good care over time. Caring soundly for yourself ensures you can continue to care safely and well for your loved one.
If you feel you cannot continue in your carer role, that is okay, too. Reach out and chat to someone about changing what you can offer, taking a break, or handing over your involvement altogether. At PalAssist, we often hear from carers who started caring but found their responsibilities grew or evolved over time. Sometimes, there is a risk that it is no longer safe or manageable for all parties. If you would like to discuss your situation, please call us for a chat on 1800 772 273.
