I Am Living

Understanding emotions and feelings

It is sad to see certain changes in someone you know well or deeply care about, who is living with a life-limiting illness. Value your relationship and treat the person who is ill as you always have, with warmth and concern. This will help you as well as them. Just be yourself. This is a sad time but it can also be fulfilling and even joyful. 

People need time to work through the pain that comes from loss. Grief is a process, rather like going on a journey without a map. There’s no formula for what should happen. It will be helpful to the person to know you’ll be there to support them, whatever comes along. The person will be learning to live with and express their feelings, such as sadness, anger, disbelief, fear and loneliness, to name a few. Be prepared to listen and recognise their feelings. This gives them dignity, they will feel that you accept them as they are. 

How can I support my friend or family member?

www.palliativecare.org.au

Everyone’s experience is different. Generally, people with a terminal condition make gradual adjustments to the way they live, often with a great deal of uncertainty. They may keep hope alive and continue to set goals. They may want to explore what it means to be dying and test ideas on you. Be prepared to listen. Every person’s journey is one they have to make as an individual. You can help make this journey a little less lonely. 

Caring for a person can be demanding. Carers try hard to keep things normal in an abnormal situation. Roles change and relationships can come under strain as people adjust to their new lives. Yet, most families and carers talk about how rewarding caregiving can be. You can support someone living with a life-limiting illness and their loved ones by letting them know what a good job they’re doing. Your friend’s life might have changed but that doesn’t mean they have. Listen to them and learn to accept their understanding of the new situation. The most valuable thing you can give is your continued support. 

Health care provided by a range of health professionals will help manage the person’s health and the symptoms and side effects they experience, such as exhaustion, nausea and weight loss. If palliative care professionals are involved, their approach to care will be holistic, addressing physical, psychological, spiritual, social and cultural needs. The aim is for the person to live each day as well as they can to fulfil their wishes. 

Are social activities possible for someone with a life-limited condition?

The person will want to remain in touch and feel part of the world. Help them avoid isolation by adapting social activities to suit them. Find out their best time of day, and plan to visit or take them out when they’re feeling most like company. 

Is it possible to work when living with a life-limited condition?

Many people living with a terminal condition want to keep working, making the most of their time. Others may work part-time, from home or not at all. Support their decision. If they have or elect to leave work, keep up your friendship by phone or email. The person you know will want you to continue to speak with them as an equal. Don’t worry that you’ll say the wrong thing or that you’ll both get emotional, just be there for them. Encourage memories and value the explorations of friendship they bring. These may be ways for the person to say goodbye. You’ll always be glad of these conversations. 

Talking to the loved ones of someone living with a life-limiting condition

Let the family know how much you value their loved one and how you support what they’re doing. Offer to help in whatever way you can. Let them know that you feel for them. Be prepared to listen. Every person’s journey is one they have to make as an individual. You can help make this journey a little less lonely. Just your willingness to be there is half the battle. Your friendship prevents isolation. Emotional support comes from remembering the person hasn’t changed and letting them know that your friendship hasn’t changed either. Know that you can make a difference by:

  • asking how you can help
  • following their lead
  • offering your support
  • showing your respect

Accepting practical help can be hard at first. Allow the person and their family to make the decisions, and fall in with them. You can give help in many ways:

  • assisting with appointments
  • assisting with home chores
  • cooking
  • driving kids to/from school
  • gardening
  • listening
  • making practical suggestions when appropriate
  • providing books
  • shopping

Being observant also helps because you can identify what may need doing. Sometimes it’s good to just do it. Remember to give yourself some ‘downtime’, ensuring that you too have some way of expressing your feelings and relaxing. It’s not an easy time.

What do you say to the family and carers after death?

Even when a death is expected it comes as a shock. It’s even harder if people stay away or don’t say anything. Just be yourself, ‘I’m sorry this has happened’, ‘I’m really sad for you’ can be enough. There’s no timeline for grief and no solution to fix it. The process of grief is actually part of healing. Hang in there with the family and ensure your help meets their changing needs. When it comes to yourself, value the relationship you’ve had. Take the time to grieve. Remain close to your friends and family for support. Your kindness and compassion have helped others and enriched your life as well. A good friend is one of the greatest benefits of being human. You have done all you could. 

Is there additional support?

You’re not alone. You can benefit from the collective wisdom of many who’ve shared your journey. More information can be found at:

Palliative Care Australia
www.palliativecare.org.au

Crisis Hotlines
https://www.iamliving.org.au/connect/

Resources
https://www.iamliving.org.au/connect/resources/