Living Loss: Caring for Someone with a Long-Term Illness

People might assume grief starts when life ends, but it often begins earlier

When someone we care for is living with a long-term illness, grief can move in quietly, long before any final goodbye. It’s not the kind of grief that people recognise straight away. There’s no funeral, no flowers, no official moment when everything changes. Instead, it’s a slow, steady ache that seeps into daily life—a kind of sorrow that comes from witnessing the gradual loss of the person we once knew, while they’re still here with us.

This kind of experience is sometimes called a “living loss”. It’s the grief that arises when someone is physically present but changing in ways that affect your relationship with them. Maybe they’re losing their memory, their independence, or their ability to communicate. Maybe their mood is different, or they’re no longer interested in the things that used to bring them joy. The person they once were seems to be slipping away.

The Emotional Toll of Living Loss

Caring for someone in this situation often brings a strange kind of loneliness. There might be people around who sympathise with the practical side of things—appointments, medication, mobility issues—but they may not see the emotional toll. You might feel guilty for struggling, especially if you believe you should be strong or grateful that they’re still alive.

But feeling sadness, anger, exhaustion or even resentment doesn’t mean you love them any less. It means you are human, and what you’re going through is incredibly difficult.

There’s often little space to talk about this.

People might assume grief starts when life ends, but the truth is that it often begins much earlier. Watching someone change, adjusting to each new version of what life looks like, and anticipating what may come next is a form of ongoing loss. It can feel relentless, and it can feel invisible.

The Importance of Self Care

That’s why caring for yourself isn’t optional—it’s essential. This isn’t about bubble baths or spa days, unless those things genuinely help. It’s about small, meaningful moments that remind you that your life matters too.

It might mean taking ten minutes to sit in silence with a cup of tea, finding someone you can speak to honestly, or giving yourself permission to feel exactly how you feel without judgement.

You may also find it helpful to speak to someone who understands that grief isn’t only about death. Support doesn’t have to come in the form of solutions. Sometimes the most valuable thing is being heard—truly heard—without being told to be positive or to look on the bright side.

There is no perfect way to cope with the grief of living loss. It changes day to day, and so will your responses to it. But your feelings are valid, and your experience matters. You are doing your best in a situation that asks far more of you than most people realise.

Being a carer means showing up, even when it’s hard. And while you do that for someone else, it’s just as important to find ways to show up for yourself. Not because it’s a luxury, but because your wellbeing is just as important as the person you care for.

You don’t have to carry this alone. And you don’t have to pretend it doesn’t hurt.

Our grief specialists are here to support you. You can find them here.