Becoming a caregiver for someone you are close to, be it a partner, parent, child, sibling or friend, is one of the greatest gifts you can offer. Caring is something you naturally want to do for those you love in your life, but the complexity and intensity of that caregiving significantly changes when your loved one is faced with a chronic or life-limiting lung condition.
Your life as you know it and as you planned it will shift – often dramatically. You may feel as if you have no control over it and you may need to rewrite the expectations of how your relationship will work into the future. Depending on the intimacy of your connection with your loved one, the role of caregiver can be particularly intense and emotional because you are both often trying to navigate a rapidly changing relationship. Everyone’s roles and responsibilities will alter. Each of you will ride a rollercoaster of emotions, but you may be in different carriages at the same time. This is particularly the case in the early stages following diagnosis and reports on prognosis and the effectiveness of treatment. Both of you will probably go through grieving for the loss of your hoped-for life as you navigate a new way forward.
In a caregiver role, you will be doing your best to care for your loved one and provide them with as much support as you can. Caregivers often don’t prioritise their own well-being, because they don’t want to take any attention from their loved one.
However, you will still be experiencing your own range of strong emotions and you will still have your own issues and needs to address. Scheduling a medical appointment or any sort of appointment for yourself, feels like you are not devoting yourself to your caregiving role and you may not have the energy anyway. It can feel like there is just too much coming at you and you isolate yourself to cope.
“No army fights a battle with everyone on the front line all the time; there are necessary times to step back for feeding, wound dressing, rest, regrouping, planning the next stage etc. Every battle is won a step at a time.“
Mal, caregiver for lung cancer patient
When you are in an empathetic relationship, it is not unusual for you as the caregiver to internalise and take on the pain and suffering of your loved one as your own. You may have little opportunity to focus on your own feelings. However, seeking help, making time to care for yourself and do things you enjoy can help to reduce the risk of caregiver burnout, otherwise the care you were so dearly trying to provide is likely to suffer.
“You may feel that to seek help for you may take the cork out of the bottle of your emotions and you cannot control what might happen next, so you avoid the risk.”
Mal, caregiver for lung cancer patient
If you find that you are “just going through the motions” and moving through life without your normal sense of purpose, you may be experiencing carer burnout. Practising holistic self-care will help to avoid depleting your compassion reserve. Getting started in practicing self-care can feel time consuming but making the decision to protect your wellbeing can help set you on the path where your caring experience is defined by tenderness and gratitude, not fatigue and heightened anxiety.
Thinking your way to self-care
If you are not used to focussing on your self-care or allocating time for this in your day, you can start with your thoughts. It may not be easy to do initially but addressing your thinking can be done anywhere. Targeting your own thought patterns and taking notice of your self-talk can be an important aspect of self-care.
If you find yourself in distress because your thoughts are in a negative spiral, you might try to reframe your thinking. Our self-talk and beliefs influence the way we behave and the energy we are able to give to others.
Initially, reframing your thoughts feels awkward or difficult, but with repetition and time it becomes easier. Our thinking is then gradually reshaped, and our helpful self-talk is strengthened.
You may try to say to yourself:
- I can find a way to meet this unwanted challenge.
- I can take actions to help myself cope with this situation.
- I will try not to get overwhelmed; I’ll just try to focus on one day at a time.
- I handled <<insert situation>> really well. That proves I can cope.
- Every big problem is just a collection of small problems that can be tackled one at a time
- I’m going okay. I’ll just keep going slowly and doing the things I can do.
- It is not a weakness to download to a trusted friend.
- Let me focus on the facts (what I know right now) rather than imagine and worry about what might happen in the future.
- It is okay to feel upset. I don’t have to hold it together all the time.
- I am happy knowing that I am doing my best right now with the resources I have at my disposal (internally and externally) to support my loved one.
- I can focus on feeling good when my mind tries to take me elsewhere.
- I know that in some way, even if I can’t see it, I am helping my loved one.
- Making time for myself each day will give me the strength for tomorrow.
- I am not weak or burdening others to let them help. Yes, please and thank you are words with which I can respond when help is offered.
Journaling or logging your emotions, moods and what you did in your day is a good way to focus on your own identity. This may start a process of articulating how you have felt on a particular day and learning to explore patterns over time.
Focussing on the quality in your life and taking the steps to help your thinking is further explored in working towards a strengths-based approach.
Lung Foundation Australia offers online peer support groups for people caring for loved ones living with lung cancer and other lung conditions. You can find information about our peer support options here.
