Caring for a loved one during the end-of-life phase can be a challenging yet profoundly rewarding and deep personal experience. The journey encompasses a range of behaviours and emotions, from moments of deep love and connection through to plain exhaustion and anticipatory grief. Identifying, acknowledging, and understanding these emotions can help us navigate this difficult time while making sure the person’s wishes are honoured.
When someone you love or care about suffers from a life-limiting illness, it is sad to see certain changes in them. Be sure to be warm and considerate of the person who is unwell, as you have always done. This will help you as much as it helps them. Just try to be yourself. Though overall this is a sad time, it can also bring about moments of immense joy and fulfilment.
Loss is a painful experience that requires time to make sense of. Grieving is a process, sometimes like going on a journey without a map. There is no formula for what should happen. Your loved one will be glad to know you are there for them, whatever happens. As they develop potentially new ways of expressing themselves, they are likely to experience a wide range of emotions such as sadness, anger, disbelief, fear, and loneliness, among others. Listen attentively and empathically to them. This gives them the dignity they deserve as they will know that you accept them as they are in the present moment.
The experience of every individual is unique. People living with terminal conditions generally adjust slowly to their new circumstances, often with a great deal of uncertainty. As they explore what it means to reach the end-of-life phase and test ideas with you, they may keep hope alive and continue to set goals. Be prepared to listen. Remember that everyone’s journey is unique. Your role is to make it a little less lonely.
The task of caring for someone who is ill can be physically and emotionally demanding, particularly as carers struggle to keep things normal in an abnormal situation. As people adjust to their new lives, roles change, and relationships can become strained. However, many people talk about how rewarding caregiving can be. By letting someone know what a wonderful job they are doing, you can support those with life-limiting illnesses and their loved ones. After all, your friend’s life might have changed but that does not mean they have. Take the time to listen to them and accept their understanding of the new situation as your continued accompaniment, understanding and support is the most valuable gift you can give to them.
Having access to health care professionals will assist the person to manage their health, including symptoms such as exhaustion, nausea, and weight loss. If palliative care professionals are engaged, their approach to care will be holistic, addressing the ill person’s physical, cultural, psychological, cognitive, spiritual, and social needs. As a result, they can live their lives to the fullest within their particular circumstances.
Your loved one is likely to wish to remain connected and feel a part of the world. It is important that they take part in those social activities that they enjoy and are suitable for them within their new circumstances. Find out the time of day when they are most comfortable to engage in the activities they enjoy and plan to visit and accompany them.
Every person and experience are unique. It is common for some people living with terminal illnesses to wish to keep working. Others may elect to work part-time, from home or not at all. Always support their decision. If a colleague or someone you care about has chosen to leave their jobs, try to keep in touch with them physically, by phone or email. It is important to continue to relate and speak with them as equals. It will not matter if you say the wrong thing or if you both get emotional, just be there when they need you most. Encourage memories and value friendships that are brought about by them. Often these conversations are people’s ways of coping with their new circumstances or saying goodbye, and you will always be grateful that you shared them with each other.
Make sure the family knows how much you value their loved one and how much you support their efforts. Let them know that you care about them and offer to help in any way you can. Be prepared to listen with empathy. Everyone must take their own journey. Sometimes being there is all one can do. Your friendship is immensely helpful and prevents isolation. True emotional support comes from remembering that the other person has not changed and demonstrating to them that your friendship has not changed either. Know that you can make a difference by:
Accepting practical help may be challenging for some people at first so, at times, you may need to tactfully persist with your offer of support. There are many practical ways in which you can help:
It also helps to be observant because you may identify where help may be needed. Be sure to give yourself some ‘downtime’ to acknowledge your own feelings and relax, so that you can take care of yourself as well.
Although the death may be expected, it can still come as a shock. Remember to just be yourself: ‘I’m sorry this has happened’ or ‘I’m really sad for you’ can be enough. No timeline exists for grief, and no solution can ‘fix’ it. It is part of the healing process to experience grief. Be there for the family and ensure your help meets their changing needs. When it comes to yourself, take the time to grieve and value the relationship you shared. Stay in touch with your friends and family for support during this challenging time. Kindness and compassion have enriched your life as well as those around you. You have done all you could and that is all anyone could ask of you.
You are not alone. You can benefit from the collective wisdom of many who have shared your journey. More information can be found at:
Palliative Care Australia
www.palliativecare.org.au
Crisis Hotlines
https://www.iamliving.org.au/connect/