Support for carers

Medical Support 

• Support in making treatment decisions 
  • Discussing treatment options with the person you care for or being their delegated decision-maker can be a heavy burden. The palliative care team, cancer specialists, family doctor, and social worker can help you in this situation to explain the treatment methods and evaluate the benefits and risks for each option. 
• Managing symptoms  
  • You may contact the health care team for assistance and advice when the person you care for experiences symptoms that are beyond what you can handle. For example, a patient suffering from severe pain and severe vomiting may be offered stronger pain medications and anti-emetics.  

Practical support

• Setting up home 
  • You may contact a social worker or community nurse for tips on home access and safety improvement ideas, such as placing non-slip mattresses and installing handlebars in the toilets. 
• Food and drink preparation 
  • Cancer patients often have poor appetite and may experience problems with bowel movements. This can be distressing for carers during meals. A dietitian may be able to help.     
• Providing personal care  
  • You may contact a community care worker for assistance in showering and toileting matters if the person you are caring for is bedridden or has limitations in mobility. They may provide tips on the usage of a bedpan or urinal bottle. 

Financial support

• Find financial support for caregiver 
  • Pension Scheme: Check if patient’s company has a pension plan for him or her.  
  • Insurance: The person you care for might have health insurance. You could check with the insurance company whether the plan covers specific expenses.  
  • Social Security Allowance Scheme (disability, low-income allowances, old age etc.): You can discuss with a medical social worker (MSW) for any schemes available for application. 
  • Hardship funding programs: Some support groups offer funding and support programmes which you can apply on behalf of the patient. For example, Hong Kong Cancer Fund, Community Care Fund, Po Leung Kuk Medical Assistance Fund, etc.  

Emotional support

• Be a good listener 
  • Let them know you are willing to help  
  • Try to resolve conflicts by talking though the issues calmly 
  • Avoid continuing the conversation when it gets heated 

Channel of communication

• Update family and friends of the person you are caring for 
  • Leave a voice message on their phone 
  • Update through messages or emails 
  • Keep an updated online diary or blog that is accessible by the family members or friends 

Being a carergiver is not an easy job. Below are some qualities that can guide caregivers through challenges and help them find professional and personal fulfilment.

1. Being present

• Caregivers are often occupied with various household chores, but sometimes being present and accompanying the person you are caring for is also important. Creating a timetable could be useful in striking a good balance between the various tasks and maintaining a meaningful relationship with the person you are caring for. 

2. The ability to adapt and being flexible

• Being a caregiver involves many unexpected hurdles, sometimes unpleasant. Either way it is important to adapt and be flexible according to the situation. Try to keep calm and be positive.

3. Care for details

• Being attentive to details, such as marking them down on the calendar, helps keep track of important events, including a doctor’s appointment or medical examination.

4. Take initiative and be proactive

• Observation plays a huge role in caregiving, taking the initiative to address the health and wellbeing concerns of the person you are caring for can help prevent minor issues from developing into larger problems.

5. Patience

• Patience is a crucial part of caregiving. It can be frustrating when things do not go according to plan. It is therefore important to be mindful and accept that these situations come with the job, and you may have no control over them.

6. The ability to be empathetic

• Being compassionate and showing empathy to a sick or elderly person who is partially or totally incapacitated is a useful tool in problem-solving and establishing trustful relationships. You will better understand the problem from their viewpoint and it will be easier to find effective solutions to those problems.

Providing care for a person with cancer can be rewarding but also physically and emotionally demanding. Prolonged periods of stress can lead to a state of mental exhaustion known as burnout, which can affect the caregiver physically or emotionally if not managed properly. 

Psychological

• Clash of personalities
• Feeling guilty
• Feeling stressed
• Depressed 
• Disappointed 
• Hopeless
• Low self-esteem

Physical

• Insomnia
• Muscle ache or pain
• Diet changes
• More susceptible to chronic diseases and emotional disorders

Social

• Socially isolated 
• Less leisure time
• Changes in lifestyle

Financial

• Increase expenditure 
• Reduction in income 
• Financial issues (cost of drugs, treatments etc.)

Signs and symptoms of carer stress

• Depression 
• Anxiety  
• Hard to fall asleep 
• Easily agitated or overreacting to minor nuisances 
• Deprived of energy 
• Hard time focusing  
• Increased appetite  
• Drinking and smoking 
• Feeling resentful 
• Cutting-back of leisure time and activities  
• Worsening health problems 
• Neglecting responsibilities  

Signs and symptoms of carer burnout

• Constant lack of energy, even after sleeping or resting  
• Too busy to pay attention or care about your own needs 
• Not enough satisfaction gained from being a caregiver 
• Have less energy compared to before 
• Experience difficulty relaxing  
• Become increasingly impatient and irritable towards the patient 
• Feeling helpless and hopeless

Caring about your own wellbeing can help you cope better with stress and fatigue, and reduce sudden bursts of frustrations or feelings of isolation. 

Tips for self-care

• Eat healthy and avoid junk food  
• Get sufficient sleep and rest  
• Avoid drinking or smoking as a relaxation method 
• Stay physically active  
• Have regular health check-ups  
• Keep in contact with friends and family  
• Learn relaxation skills (e.g., deep breathing techniques and mindfulness). 

Some healthy ways to cope with physical and emotional strain when caring for cancer patients:  

• Focus on the value of caring. Feel appreciated. 
  • Recognise the benefits of caring such as learning new skills and improving interpersonal skills. Caring for someone in need may provide you with work satisfaction. 
  • Keep in mind that the person you care for is grateful for your help. 
  • Recognise and appreciate that your caregiving is making an impact. 
  • Talk with a friend or family that is supportive and acknowledges your efforts. 

• Set boundaries and limits. Be kind to yourself. 
  • Communicate with the patient the extent of workload you can manage and what you are comfortable with helping. 
  • Establish a realistic expectation for the patient's condition. 
  • It is a demanding role to be a caregiver. Try to avoid using the words “should” or “must”. Accept that you are doing your best. 

• Organise your time. Give yourself a rest. 
  • Plan and keep track of your pre-booked appointments to help you prioritise your weekly tasks. 
  • Prioritise and arrange leisure activities that you enjoy. 
  • Pamper yourself (e.g., shopping, manicure, spa, staycation, fancy dinner, a movie, etc.). 
  • Maintain a good personal relationship with friends and family. 
  • Be vocal about your feelings. Do not bottle it up. 

• Feel empowered. 
  • Avoid emotional traps such as feeling guilty or sorry. 
  • Embrace the positivity you have found during caregiving. 
  • Think about the rewarding moments of caregiving or how it has made you stronger. 
  • Engage in activities that are meaningful or rewarding to you outside of your caregiving time. 
  • Do not focus too much on things out of your control. 
  • Celebrate the small successes. Remember it is the effort that truly counts. 

• Draw on spirituality. 
  • If you are religious, you may find comfort in attending religious workshops, gatherings or support groups and talk about your feelings with a religious leader or counsellor. 

• Prepare for the unexpected. 
  • When the person you care for is diagnosed to have cancer, life may seem unpredictable and some caregivers may find this uncertainty stressful. Do not stress on what you cannot control. Instead, focus on tasks within your control. 

• Writing a journal. 
  • Keeping a journal may allow you to express your worries and frustrations. At the same time, a journal may help keep track of how you are coping and identify areas where you may need assistance. 

• Seek for temporary caregiving help. 
  • Respite care - Respite care can be provided by a residential care facility and occasionally provided by a hospice or hospital for a few hours, overnight or a few days at a time. 
  • Reasons for respite care 
    • Taking time out to attend your own health appointments 
    • Visiting friends or other family members 
    • Catching up on some sleep at home 
    • Running errands (grocery shopping, taking mail to the post office, etc.) 
    • Attending events (wedding, graduation ceremony, etc.) 
  • Spread the responsibility or caregiving task, such as finances or medical responsibilities, between family members 
  • Find a person, such as a family member or volunteer from your support group, to call and check up on you at a regular time 

• Contact cancer support groups for help. 
  • Please refer to Psychological support for carers and patients 

For details, please refer to Counselling Service, Psychological Support for Patients and Carers under Community Resources

Cancer Council Australia: Looking after yourself if you’re caring for someone with cancer

Video

▶️ Jockey Club End-of-Life Community Care Project: Family Support (Chinese version only)

Special thanks to Ms. Kelly Yee-Ting Kwan, Ms. Gobby Wing-Tung Kwong and Dr. Wendy Wing-Lok Chan, Department of Clinical Oncology, the University of Hong Kong for authoring and editing this article.

Last updated on 1 Nov 2021.