“Being the primary carer, I struggled to keep my head above water, yet I could never muster the courage to reach out for support for myself. For some reason I felt guilty, because it was not me going through this unfathomable diagnosis. I needed to be strong for my family, not go around looking for bandages and attention for myself.” Craig*

(*name changed to protect anonymity)

Craig’s situation is so common we wanted to spotlight it.

When someone you love is diagnosed with a chronic or terminal illness, you'll experience shock, fear and all stages of grief, but also perhaps gratitude, even relief at times. Here's how to navigate that journey.

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Replace guilt with compassion.

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Understand that looking after this person will hurt you in myriad ways.

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Take care of yourself, so that you can take care of them.

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Come out the other side.

Here’s what is well within the range of “normal” responses when you’re caring for a loved one:

• Love and Affection: You feel warm and fuzzy, you share caring touch and kind words.
• Stress and Anxiety: Tightness in the body, tense conversations, ruminating on worries. You fear the unknown and worst-case scenarios.
• Compassion and Servitude: It feels honourable, you take on tasks with willingness, joy and generosity.
• Guilt and Shame: It feels heavy and dark. You resist taking breaks or wanting anything for yourself. It creates distance between you and others.
• Gratitude: A change in perspective and routine leads to noticing beautiful moments and gifts.
• Resentment: Feels awkward and cumbersome, you do the bare minimum with hesitation and reluctance; There’s passive aggression and dishonesty.
• Sadness and Grief: Anticipatory grief over the potential loss of your loved one and sadness from witnessing their suffering.

What you’ll probably do is make a value judgement on these responses and place them on a continuum between “Noble” and “Shameful.” You’ll openly admit to experiencing some things, while keeping others quiet, or hidden.

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In times of trial our values are tested. So, it’s absolutely normal to behave “out of character” in a challenging situation. You’ll have to learn new skills, adapt and grow as you learn to hold new emotions, and there could be some bumps along the way. Be gentle with yourself.

When people say to you… “Take care of yourself” …here’s what that might look like:

• Acknowledge all your feelings: Recognise that these responses are natural and do not reflect any change in your love or commitment to this person. Trust the bond.
• Set realistic expectations: Understand that it is impossible to always provide perfect care. You will be late sometimes, forget things or lose patience. You’re human.
• Seek peers: Be discerning and look for support groups where you can share and learn from people in very similar situations. Meaning, instead of a “Cancer” group, look for a “Lung Cancer” group. Instead of an “Addiction” group, look for a “Gambling Addiction” group, and so on. The more specific help you receive, really can improve your capacity to cope well. Don’t limit yourself to your local area. You never know… the most impactful support for you might come from a TikTok account across the other side of the world.
• Delegate Tasks: Accept help from family members, friends, respite services or professional caregivers to share the load. Keep adding to a comprehensive list of big and small things and when someone says, “let me know if there’s anything I can do”, email it to them.

“Compassion fatigue” will occur due to the emotional strain of caring for someone. Here’s how youcan mitigate the impact and maintain balance:

1. Fill your cup: Engage in regular activities that bring you joy and relaxation; Hobbies, sport, reading, meditation.
2. Enlist professionals: Consult with mental health practitioners to help you process emotions and develop coping strategies.
3. Establish Boundaries: Healthy guardrails will help you ensure an adequate amount of personal time and space, to avoid fatigue and resentment.
4. Educate yourself: Gain knowledge about your loved one’s condition, and suggested caregiving techniques and tactics, so that you feel more confident and less overwhelmed.
5. Maintain routines: Make adjustments if you need, but keep up the systems and practices that you’ve enjoyed in the past. Stay connected with the friends, family and communities that you usually would.
6. Stay healthy: Resist the urge to deprioritise yourself. Continue to strive for regular medical check-ups, a balanced diet, and sufficient sleep.

The role of a primary carer for a loved one with a chronic or terminal illness is both rewarding and challenging. You may look back on this time as one of the most nourishing phases of your life.  Remember that taking care of yourself is not a luxury, but a necessity.

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