A carer with no working hours: the exhaustion nobody counts

»How’s your dad doing?«

You hear this question every day. In the shop, from the neighbour, from a cousin you haven’t seen for six months, from a colleague in the corridor. You answer politely: »Oh, you know. He has good days and bad days.« But nobody asks how you are. Nobody knows that you woke up twice in the night because your dad was moving about in the next room, and that the second time you lay awake until five, listening to check he was still breathing evenly. Nobody knows that this morning in the car, before work, you rested your head on the steering wheel for a minute and thought you couldn’t go on. And then you went anyway.

Carer exhaustion is one of the quietest kinds of tiredness I know. It doesn’t appear on any payslip, it has no working hours and no weekends. Often even the person carrying it doesn’t see it — because caring for a parent is something you »just do«. In this post I want to look at where this exhaustion comes from, why it is so hard to admit, and what happens in the family around the person who cares.

Work without working hours

When people describe caring for an elderly or ill parent, they first list the tasks: shopping, medication, lifts to the doctor, bathing, cooking. These are things you can count. But exhaustion rarely comes from them alone. It comes from the fact that care never really switches off. Even when you are not with your parent, you are with them — in your thoughts, with the phone in your pocket, with ears waiting for a call.

Researchers have taken this seriously for decades. One of the most cited studies, published in 1999 by Richard Schulz and Scott Beach, followed older people caring for an ill spouse. Those who experienced caregiving as a strain had, over a period of about four years, a 63 per cent higher risk of death than comparable people who were not caring for anyone. How you read this matters: it wasn’t caring itself that was deadly, but caring experienced as effort with no respite. Carers who did not feel strained showed no such risk.

Later, a meta-analysis by Martin Pinquart and Silvia Sörensen, which combined several hundred studies, showed a similar pattern: family carers have, on average, more stress and depressive symptoms and a weaker sense of their own effectiveness than people who aren’t caring for anyone. The differences in physical health are smaller, but they exist. In other words, what you feel is not an exaggeration. It is the expected response of body and mind to a long-term load that never switches off.

What care involves — and what nobody counts

If you tried to list everything done by someone caring for a mother with dementia, you would probably give up after half an hour. Not because there is little work, but because there is so much that it can’t be captured. The most tiring things on such a list aren’t tasks at all. They are states: being on alert. Deciding for someone who once decided for you. Bearing it when your parent doesn’t recognise you, or accuses you of stealing their purse.

This is called invisible work. It includes coordinating (who goes when, what which doctor said, where the test results are), constant vigilance, emotional work (comforting, staying calm, not showing fear) and making decisions under uncertainty. Invisible work doesn’t end when you leave your parent’s home. It comes to bed with you.

That is why carer exhaustion often resembles what I describe in the knowledge base under chronic stress: the body stays on standby even when there is no danger. A system built for short bursts has to keep running for months and years.

When the role swallows the person

In the 1990s the sociologists Marilyn Skaff and Leonard Pearlin described a phenomenon they called role engulfment. They noticed that in some family carers, over the years, more and more of their identity merged with the role of carer. Friendships recede, hobbies disappear, work becomes merely a place you go between two visits. Ask them who they are, and they first tell you whom they care for.

Together with other researchers, Pearlin also described another, related feeling: role captivity. It is the sense of being in a position you didn’t choose and from which there is no way out. It isn’t necessarily that you don’t want to care. It is that you have no choice — or at least that is how it feels.

These two feelings matter because they explain why exhaustion isn’t just about being tired. A person swallowed by a role doesn’t only lose strength. They lose part of themselves. And when the parent one day dies or moves into a care home, they often find themselves in a strange emptiness — no longer knowing who they are without this role.

Signs you are running out

Carer exhaustion doesn’t happen overnight. First there is adrenaline and a sense of meaning: someone needs you, and you can manage. Then comes routine, which slowly eats into sleep and free time. Only later come the signs that people often put down to something else:

• irritability that surprises you — you snap at your child or partner over small things,
• poor sleep, even when you could sleep,
• more frequent colds, headaches, back pain,
• a feeling of numbness or cynicism — even towards the parent you love,
• withdrawing from friends, because you »don’t have time anyway« or no longer know what to talk about,
• thoughts you tell no one: that it would be easier if it were all over.

The last sign is especially hard, because it stirs deep shame. But for carers the thought »I wish it were over« usually doesn’t mean they wish their parent dead. It means they wish for an end to the suffering — the parent’s and their own. You can say such a thought out loud and no one will judge you for it, at least not in the therapy room.

If you recognise several of these signs, you may find Burnout is not laziness: signs your nervous system is asking for a break helpful, and why everything hurts more after a bad night is covered in Sleep and emotion: why everything hurts more after a bad night. The knowledge base also has a short burnout self-check to help you gauge where you are.

Why you don’t say it: shame and loyalty

If exhaustion is so common, why do we talk about it so rarely? In the literature and in conversations with carers, at least three reasons keep coming up.

The first is loyalty. Admitting that caring for your mother exhausts you can feel like betrayal — as if you were saying your mother is a burden. In relational family therapy, in which I am training, we know how deep these loyalties run. Your parent gave you life; how could you say it’s hard to give something back?

The second is shame. If you have always been the one who copes, admitting you can’t is a blow to your picture of yourself. I wrote about why we are so ashamed of burnout in Burnout and shame: why it is so hard to say out loud.

The third is the people around you. They often don’t know how to respond. They say »just look after yourself« or »well, she is your mother«. Both are meant kindly and both leave you even more alone. The first because it doesn’t say how, the second because it lets you know you mustn’t complain.

When one takes on everything, the others step back

In family therapy we also see carer exhaustion as a sign of how the family system is arranged. Murray Bowen described a pattern I often see in caring for parents too: when one person in the family overfunctions, others begin to underfunction. Not necessarily because they are lazy or uncaring. But because the system leaves the space someone fills to that person.

Research supports this. As early as 1980, Steven Zarit and his colleagues found, among relatives of people with dementia, that the feeling of burden was not most closely linked to how severe the parent’s difficulties were, but to how often other family members came to visit the person who was ill. Where they came, the burden was lighter. So the difference lies not only in the illness, but also in how the care is shared.

The more the carer takes on, the less is expected of the others, and the less is expected of them, the less they offer. In the end the carer feels nobody helps, while the others feel they aren’t needed, since she »has everything under control«. A conversation between siblings might sound like this (composed, not a real person):

»Why didn’t you tell me she was in hospital again?«
»Because you’d have said you didn’t have time anyway.«
»You didn’t even ask me.«
»I haven’t asked you for twenty years, and for twenty years you’ve had everything sorted.«
Silence. »If you needed something, you’d have said.«
»I’m saying it now.«

In this conversation you can see how the pattern is held in place from both sides. She doesn’t ask, because she doesn’t believe she’ll get anything. He doesn’t offer, because he doesn’t believe he is needed. The pattern can only change once someone names it. You can read more about the roles we carry in a family in the knowledge base under roles in the family.

Grief running alongside

The part of exhaustion people overlook most often is grief. When you care for a parent whose memory or body is failing, you are losing the person they were — even though they are still here. The researcher Pauline Boss coined the term ambiguous loss for this: a loss with no clear beginning or end, which those around you therefore don’t recognise as a loss.

Grief uses up energy, even when you don’t notice it. That is why people caring for an ill parent are often exhausted even on days when there wasn’t much to do. This is the subject of Grieving someone who is still alive: dementia, addiction, estrangement, and grief that begins before death is covered in Anticipatory grief: grieving before the death.

When people hear this, it often brings relief. The tiredness they took for weakness takes on a different meaning: it isn’t only the result of work, but also of love that is saying goodbye.

What helps — and why »look after yourself« isn’t enough

The advice »look after yourself« is right, but empty if it doesn’t say how. Research on carers shows that three things help most: sharing the load, regular breaks and a space where you are allowed to say how you are.

Sharing the load begins by making invisible work visible — saying it to others in the family, concretely and without reproach. Breaks aren’t a luxury but a condition for lasting the distance; how to take them without your conscience eating at you is covered in How to take a break from caring for your parents without feeling guilty. Where to turn for concrete help is covered in Where to find help as a carer: who to turn to when you can’t cope alone any more.

In short: for health questions, the first port of call is your parent’s family doctor, who can also refer them to the community nursing service. For home help and the entitlements you have as a family, contact the local social work centre — check the details and conditions there, as they change. And don’t forget your own family doctor: your health is part of caring for your parent, not something that comes later.

The third thing is a space where you are allowed to be tired. It might be a friend, a support group for relatives, or therapy. In the knowledge base you can also read about self-compassion — the ability to say to yourself what you would say to a friend in the same position.

Exercise: one week, written down honestly

You can start this exercise today. It takes a few minutes a day, seven days in a row.

1. Every evening, write down everything you did for your parent that day. Not just tasks, but invisible work too: how many calls, how many hours on alert, which decisions you made.
2. Next to each entry, rate from 1 to 10 how much it drained you. It often turns out that the chores drain you least, and vigilance and worry the most.
3. Write down when you had at least ten minutes to yourself that day — without a phone in your hand and without thinking about your parent. If there were no such minutes, write that down too.
4. After seven days, read your notes as if they had been written by someone you love. What would you say to them? Would you tell them to try harder?
5. Choose the single task with the highest rating and think about whom you could partly hand it to, or how you could make it lighter. Show what you have written to someone in the family.

The point of the exercise isn’t to give you one more task. It is to give your work — including the work nobody sees — a shape you can show to others and to yourself.

Where this story doesn’t hold

Carer exhaustion isn’t inevitable, and it isn’t the only truth about caring.

Caring isn’t only a burden. Alongside strain, research also describes what carers gain: a sense of meaning, a closeness that wasn’t there before, reconciliation with something old. Many people, despite everything, describe caring for a parent as something they wouldn’t trade. Both can be true at once.

Not all tiredness is carer exhaustion. If for weeks you have taken no pleasure in anything, if your sleep and appetite have dropped sharply, or if thoughts of an end are not only about your parent’s suffering but about your own life, this may be depression that needs a doctor’s assessment. Don’t wait for the caring to be over. In a crisis, call Zaupni telefon Samarijan in Slovenia on 116 123 (24 hours), at night Klic v duševni stiski in Slovenia on 01 520 99 00, and in an emergency 112.

You don’t have to put up with everything. If your parent is violent towards you — in words or actions — neither illness nor age excuses it. You may set a boundary, look for another form of care or step back. That isn’t ingratitude.

If you would like to talk about any of this, I also work with English-speaking clients.

What to remember

• Carer exhaustion isn’t weakness, but the expected response to a long-term load that never switches off.
• What drains you most isn’t the chores but the invisible work: vigilance, coordinating, deciding and emotional work.
• When one person in the family takes on everything, others often step back — the pattern changes only once someone names it.
• Part of the tiredness is grief for the parent as they used to be.
• What helps is sharing the load, regular breaks and a space where you can say how you are — and support from the family doctor, community nursing and the social work centre.