Kate Jurgens is a Bereavement Coordinator at the Southern Adelaide Palliative Services where she supports family and friends caring for persons with terminal illness. In this article, we asked her to share why taking care of oneself is important for carers and some self-care tips.
Why is it important for carers of persons with terminal illness to ensure their own self-care?
Self-care is important because when a family member develops a life limiting or terminal illness, it impacts most areas of life. Though there can be many rewards from caregiving, such as more quality time together, a chance to connect in a deeper way, and provide new ways to show love. Alongside the rewards long term family carers will typically experience negative changes in their health and wellbeing. Taking care of yourself can reduce negative impacts.
Family carers often experience poorer quality of sleep, difficulty in participating in fitness and social activities, changes in dietary habits, and increased levels of depression and anxiety. Caring can become isolating. Families also experience a drain on their finances due to the additional costs that treating and responding to illness demands. This drain in turn increases the level of worry experienced by family carers.
Self-care strategies for maintaining wellbeing:
- Ask about support services for yourself and your loved one, such as home help, equipment, financial support, and carer support services.
- Organise, or accept offers of, someone shopping for you, or them spending time with your family member while you go to the shops.
- Keep connected to family and friends.
- Practice relaxation. Notice the tension in your jaw, and shoulders, deliberately soften and relax them.
- Notice your breath, slowly inhale and exhale between five to 10 times, while softening your gaze or closing your eyes.
- Attend to your own health. Keep your appointments with doctors and other health professionals.
For carers who are grieving, what can they do to ensure continued self-care?
When someone you love dies, your experience of grief can be overwhelming, or you may find that you are functioning surprisingly well. Often during the first few weeks following a death, people find their sleep disrupted, their interest in food diminished, and have lower levels of energy, or experience excessive energy that they feel unable to sit still. Tears may or may not be expressed. Others struggle with feeling bad about something that they did or did not do.
"Long term family carers will typically experience negative changes in their health and wellbeing. Taking care of yourself can reduce negative impacts."
Risks to your health during the first few weeks and months of grief include eating poorly, drinking alcohol or using other forms of drugs to relax, and becoming isolated as services withdraw. Many people speak of the loneliness that they experience as family and friends return to their normal lives.
Self-care strategies:
- Eat healthy food, even if in small amounts.
- Accept invites to be with family and friends.
- Join in activities/hobbies/interests once you feel able, to help combat long periods of time alone.
- Seek professional support if concerned about your responses, such as your doctor or a counsellor.
- Connect with your spiritual beliefs, and spiritual community if available.
- Engage in healthy exercise, such as walking, swimming, or aqua aerobics. Even better if you go with a friend.
- Reclaim good sleep routines, using slow breathing and relaxation techniques.
The death of a person also impacts other family members. What practical pointers can you suggest to carers who have children, partner and/or other parent impacted by grief?
Grief is a highly individual experience. It can be barely noticeable, delayed or ambivalent for different reasons. Within close relationships, family or cultural groups, there will be differences in the way each person responds and deals with death.
Strategies for supporting others:
- Patience, with yourself and others. Grief takes time.
- Ambivalent grief may occur when someone had a difficult relationship with the deceased.
- Expect differences in how grief is expressed. Some people will need to talk, others will not.
- Speak the deceased’s name in stories and memories if culturally appropriate.
- If parenting young children, maintain a general routine whilst allowing for and being patient with sudden expressions of grief (anger, frustration, withdrawal, sadness, fear).
- Provide honest information to questions, tailored to age.
- The loss of someone you lived with requires significant change. Many family members have spent their whole life together. Be patient.
- Seek out support. Use in-person, web based or printed resources.