The experience of caring for someone with a life-limiting illness

The palliative care journey can bring many different emotions. There is no right or wrong way to feel.

When someone you love is living with a life-limiting illness, life can change in ways you may not have expected. As a carer you may find yourself taking on new responsibilities while also adjusting to changes in your relationship, your daily life and your hopes for the future.

It can be a challenging and emotional time. You may experience many different feelings, sometimes all in the same day.

You may feel…

- Worried about what will happen and whether you will know what to do.

- Anxious about your loved one’s health, symptoms or what the future may hold.

- Sad about the changes you are seeing and the things you can no longer do together.

- Frustrated or angry about the illness, the situation or the demands of caring.

- Overwhelmed by appointments, decisions, practical responsibilities and the needs of your family.

- Guilty that you aren’t doing enough, or because sometimes you simply need a break.

- Lonely when caring takes you away from your usual activities, work, friendships or other relationships.

- Relieved when your loved one is comfortable or when someone else can share the caring load.

- Hopeful about making the most of the time you have together.

- Grateful for moments of connection, support and simply being together.

You may experience some of these feelings, all of them, or none of them.

Your relationship may change

When you become a carer your relationship with someone can change. You may find yourself spending more time managing medications, appointments, symptoms and practical tasks, and less time simply being together.

You might sometimes feel like a carer first and a partner, parent, child, sibling or friend second.

This can be difficult, and it is understandable to miss the relationship you had before the illness.

Where possible, try to make space for moments where you can simply be together – talking, listening to music, watching something you enjoy, sharing a cup of tea or sitting outside.

These moments don’t have to be big or special. Sometimes just being together is enough.

You are not alone

There is no perfect way to be a carer.

Some days may feel manageable and others may feel overwhelming. You may experience love, sadness, frustration, hope, fear, exhaustion and even relief — sometimes all at once.

Whatever you’re feeling, you don’t have to go through it alone.

At Banksia, we care for families and carers as well as the person living with a life-limiting illness. If you need support, please speak with a member of your Banksia team.

Grief can begin before someone dies

When someone has a life-limiting illness, grief doesn’t always begin after they die. You may begin to grieve the changes and losses you are experiencing while your loved one is still with you.

This is sometimes called anticipatory grief.

You may grieve changes to:

your loved one’s independence

your relationship and the way you spend time together

shared activities and routines

your role within the family

plans you had made for the future

the life you imagined you would have together

your own freedom, work or social life as your caring role changes.

Experiencing these feelings does not mean that you have given up hope or that you love your family member or friend any less.

You can feel hopeful about today while also feeling sad about what may happen in the future. You can enjoy a good day and still be worried about what lies ahead. Different feelings can exist alongside each other.

Understanding anticipatory grief

You don’t have to do it all

When you’re focused on someone else’s needs, it can be easy to put your own aside. But looking after yourself is an important part of caring.

You don’t have to manage everything alone.

If you can, accept offers of help. Let people know what would make a difference – whether that’s preparing a meal, doing some shopping, taking your loved one to an appointment or simply giving you some time to yourself.

Taking a break does not mean you are letting your loved one down.

It is also okay to tell someone when you’re struggling. You don’t have to wait until things become overwhelming before asking for support.

You don’t need to have all the answers

Nobody is born knowing how to be a carer.

Caring for someone with a life-limiting illness can bring new situations, decisions and responsibilities that you have never faced before. It is normal to have questions, to feel uncertain and to sometimes wonder whether you are doing the right thing.

Your palliative care team is there to support you too. They can help you understand what is happening, prepare for changes, talk through your concerns and connect you with other sources of support.

Counselling

When things feel too much

There may be times when your feelings become difficult to manage or begin to affect your everyday life.

If you are feeling persistently overwhelmed, anxious, low or unable to cope, talk to your GP, palliative care team, social worker or another health professional.

As a Banksia carer, you can also talk with a member of your Banksia team about how you are feeling. We can listen, help you understand what support may be available and connect you with appropriate services.