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Caring Tips >Tips for Carers

What is it Like to Take Care of Palliative Care Patients?

1. Whether it is the patient or his/her family members, to face the reality of imminent death is something accompanied by complicated feelings. During this process, friends and relatives of the patient may have the following thoughts or feelings:

  • Needing to take active initiatives? Fulfilling responsibilities? Bracing yourself to proceed with the tasks?
  • Having mood swings, being thoroughly exhausted, feeling hopeless and fearful
  • Panicking, feeling overwhelmed
  • Lacking patience, being annoyed, feeling guilty
  • Completely losing control

Recommendations for you

  • Accept that you cannot do everything perfectly, but you should understand you are trying the best you can
  • During this process, try to appreciate the positive meaning and values in it

2. You may also feel fearful, despair or helpless when it comes to healthcare or your future

Recommendations for you

  • Understand more about Palliative Care (You can refer to “Overview” for more details)
  • Communicate with the medical team: understanding the multidisciplinary approach for the management of patient conditions, patients or their family can actively ask questions and seek assistance
  • Excessive or negative information: screen the information appropriately from reputable sources and focus on the positive and helpful pieces

How to Care for Palliative Care Patients?

1. How to communicate with palliative care patients?

  • You may not need any professional skills. The key is to be open and genuine as you show your love and care
  • Listen carefully and empathetically
  • Show empathy in your response: give appropriate responses to the patient’s expression of emotions. Communicate understanding sensitively through eye contact or body language
  • Provide practical support, such as offering to help take care of the children, shop for daily necessities, take care of errands or accompany the patients for follow-up visits at hospital
  • Discuss with the patient what the most important things for him/her are, revisit the past with him/her, review the meanings of life, or address unfinished business

2. Visiting and communicating with palliative care patients

  • Sit close to them to reduce their sense of isolation
  • If appropriate, hold their hands or pat them on the shoulders to show support. When necessary, help the patient clean their face, clean their mouth or massage
  • Talk to them in a gentle tone and pay attention to their reactions from time to time. Let them rest if they look tired or irritable
  • Listen attentively and show acceptance for them to express their fear and uneasiness; there is no need to talk about their illness unless they voluntarily bring it up
  • Give credit to or affirm the past achievements or contributions of the patients. If possible, respond or help them fulfil their big or small wishes

Do not

  • Actively mention the symptoms and illnesses to avoid arousing anxiety
  • Recommend treatments or medications yourself, leading patients not trusting the doctors
  • Overload patient with unwanted information. You can encourage them to communicate with doctors and professionals
  • Be overly protective and foster unnecessary dependence

Self-care – Emotions

Warning signs of burnout

  • Feeling stuck in a constant task of caregiving and not getting any satisfaction
  • You find it hard to relax
  • You feel helpless and hopeless
  • You find yourself more prone to cold or flu, and your immune system has weakened
  • You find yourself too busy to take care of your own needs
  • You find yourself less energetic and remain exhausted after sleep or rest
  • You find yourself losing patience and getting angry at the person/people you are taking care of

Recommendations for you

  • Treat yourself to frequent short breaks.
  • Understand the gap between ideal and actual care you can provide and try not to pursue perfection
  • Do you feel you are alone in this? Try not face everything on your own and take up all the responsibilities of caring for the patient
  • When you need help, seek help from someone you trust
  • Share your thoughts and feelings via phone calls or text messages with someone you trust
  • Watch out for signs of depression and do not delay seeking professional help
  • Address your own needs and accept help from others

Sometimes, you may feel guilty or lacking of ability. Even though you are trying your best, you still feel under-appreciated or that others disapprove. Whenever you feel low, remind yourself that:

  • "I am helping my loved ones!"
  • "I should take a break and do something that makes me comfortable or happy!"
  • "It is normal to feel overwhelmed from time to time given the difficult job!"
  • "The difficulty time shall pass!"
  • "I can reach out for help!"
  • "I have tried my best!"

Self-care – In Practice

  • Since carers need to do a lot of physically demanding work, they should take good care of their body, especially the back
  • Depending on your own preference, take part in activities or listen to music to help you relax and make you happy
  • Treat yourself well: take a warm bath, light a candle, find time to have a manicure or write
  • Take healthy and nutritious meals, have adequate sleep; find time to do exercise and take a short walk every day
  • Laughter is the best medicine; buy a good book or watch a comedy; rediscover the happy moments of the day
  • Write down your thoughts and feelings in a diary. This will help broaden your perspective to assess the situation and allow you to channel your emotions
  • Maintain regular contact with your family members, friends and volunteers, so that everyone understand your needs whenever you need help
  • Take some time off: Find an afternoon or evening to go on a walk, ask a friend or a family member to go to your home and take care of the patient for a while; if conditions do not allow, you can invite friends or family over to your place for tea or a chat, and remain in touch with others. Communication is key
  • Carers should try to attend their own follow-up visits as far as possible
  • Try relaxation or mindfulness exercises