Loss, grief, and the hidden costs of long-term caregiving

We talk a great deal about grief when somebody dies, and increasingly we are becoming better at recognising the grief that can follow when a long caring role comes to an end. What I don’t think we talk about nearly enough, and therefore is underestimated, is how much loss can occur while a person is still caring, sometimes over many years, and how gradually those losses can accumulate until they have become such a normal part of life that the carer may not even recognise what they are experiencing as grief.

For someone providing full time, long term or consistent care to a partner, parent, child, sibling, friend or another person in their life, grief does not necessarily wait until the caring role is over. It can begin years earlier and can sit alongside love, commitment, responsibility, tenderness, frustration, resentment, exhaustion and meaning. All those things can be true at the same time, and recognising the losses within caring does not diminish the love or the value of what a carer gives.

I know something about this personally. I cared for my mum for seven years as she lived with dementia, and I lived with and cared for Dad through the last two months of his life until he died in my arms late one night. And of course, as an end of life doula, I have been alongside many as they are supporting their person.

They are all very different experiences and, importantly, they were relationships, not simply caring roles. With Mum and Dad, I was still their daughter, with all the history, love, expectations, frustrations, family dynamics and memories that being a daughter contains, while gradually taking on responsibilities that changed those relationships enormously. With Mum, I was also the power of attorney, medical decision maker, and then after her death, the executor of her Will.

There was love in caring for my parents and there was privilege in being able to be there, and both times I chose to be there. There were experiences I would not give back for anything, and there were also costs. I think we need to become much better at holding both of those truths without feeling that acknowledging the difficult parts somehow diminishes the caring or love and all else that it holds.

Loss can begin long before somebody dies

When I have worked with carers, including through the regional Carer Gateway caregiver education programs we delivered, I have often spoken about loss as something much broader than bereavement. A carer may be grieving the person their partner or parent used to be, the relationship they once shared, or the future they had expected to have together. This can be particularly apparent where dementia, neurological illness, disability or serious illness changes communication, personality, intimacy, independence or the balance of a relationship.

A husband may gradually become his wife’s primary carer. A daughter may find herself making decisions for the parent who once made decisions for her. A spouse or partner may still be deeply loved while companionship, sexuality, shared decision-making and everyday life change beyond recognition. These changes do not necessarily happen in one dramatic moment; often they unfold slowly, sometimes over years, which can make the grief much harder to identify and acknowledge.

Alongside those relational changes, there can be another collection of losses taking place almost unnoticed. Freedom and spontaneity can disappear, sleep may be interrupted for months or years, friendships change, travel becomes difficult or impossible, hobbies fall away and privacy can become scarce. Even something as simple as leaving the house for a coffee, attending an appointment or accepting an invitation may require planning, another person to step in, and confidence that the person being cared for will be safe.

Choice itself can begin to feel limited, and this is an area I think we need to speak about more honestly because we often describe caring as something people choose to do.

Sometimes it absolutely is a choice made willingly and wholeheartedly because the person wants to care for someone they love. At other times there may be very few genuine alternatives because services are unavailable, unaffordable or unsuitable, other family members cannot or will not help, or the person requiring care simply has nowhere else to go.

Data from the Australian Bureau of Statistics 2022 Survey of Disability, Ageing and Carers reflects this complexity, with family responsibility and emotional obligation among the reasons primary carers give for taking on care, while some carers report that they felt they had no other choice.

There is a very different emotional experience between choosing to care and feeling there is nobody else who can do it, even when enormous love and commitment exist in both situations.

The financial costs can follow a carer for decades

One of the least acknowledged losses associated with long-term caring is financial. For many carers, taking on substantial caring responsibilities means reducing working hours, turning down promotion, using accumulated leave, changing employment, stepping away from professional development or leaving a career altogether. What is lost is not only the wage coming in today, but the career opportunities, salary growth, confidence, professional identity and future earning capacity that may have developed over many years.

In Australia, Carer Payment is an income support payment for people who are unable to support themselves through substantial paid employment because of the demands of their caring role, while Carer Allowance recognises the ongoing daily care provided to a person with disability, a medical condition or frailty. Depending on circumstances, a person may receive both. At August 2026, the maximum Carer Payment for a single person is $1,200.90 per fortnight and Carer Allowance is $162.60 per fortnight.

These payments matter enormously, particularly for people who otherwise have very limited income, but they do not replace a wage, career progression or employer superannuation. The Australian Government does not make superannuation contributions on Carer Payment because it is an income support payment rather than a workplace entitlement.

Carers Australia’s Carer Wellbeing Survey 2025 Report makes the long-term financial effect difficult to ignore. Among carers surveyed, 72.5 per cent said becoming a carer had reduced the amount of income they earned, 71 per cent said they had been unable to accept employment opportunities such as promotions because of caring, and 70.5 per cent believed they had accumulated less superannuation than they otherwise would have. Almost two thirds, 64.3 per cent, said their household financial situation had worsened since they became a carer.

Earlier economic modelling commissioned by Carers Australia estimated that an average primary carer may lose around $392,500 in lifetime earnings and about $175,000 in superannuation by the age of 67, although the amount varies greatly according to how long a person cares, their age and what employment they would otherwise have undertaken. Behind figures like these are people who may spend years performing physically and emotionally demanding work, often around the clock, and who can emerge from that role older, financially poorer and with substantially less retirement security than they might otherwise have had. For many carers, the financial cost of caring does not end when the caring does.

When the carer’s health keeps getting postponed

Another pattern I have experienced, seen and heard repeatedly is the carer who keeps putting their own health further down the list. The doctor’s appointment is postponed because the person they care for is unwell, the dental appointment gets cancelled because nobody else can stay with Mum, the mammogram or blood test gets pushed back, exercise falls away, meals become whatever is easiest and sleep is disrupted so consistently that exhaustion begins to feel normal. Sometimes there is so much focus on the health of the person receiving care that nobody is paying much attention to the health of the person keeping the whole arrangement going.

Australian data tells us that many carers are themselves living with health challenges and disability. In the ABS 2022 Survey of Disability, Ageing and Carers, nearly 44 per cent of primary carers were themselves people with disability.

Research into caregiving at end of life has similarly identified exhaustion, physical strain, lack of rest and respite, reduced opportunities for self-care, loneliness, relationship stress and financial pressure as factors that can affect carers’ physical and mental health.

This is one of the reasons I think telling an exhausted carer simply to look after themselves can land badly if we do not also ask what would make that possible. Self-care matters enormously, but we cannot make the consequences of caring solely the responsibility of the already exhausted person providing the care. Families, friends, workplaces, health services, governments and communities all have a role in making it possible for the carer to remain a person with needs of their own.

There is also sobering research about mortality among some long-term carers. A longitudinal study of spouses caring for people living with Alzheimer’s disease or related dementia found that 18 per cent, almost one in five, died before the person they were caring for. While the study did not find that caregiving itself increased mortality risk, the finding is still a powerful reminder that the health and mortality of the carer cannot be treated as secondary to the health of the person receiving care. It is also why I would rather use this well supported finding than repeat the frequently quoted claim that 30 per cent of long-term caregivers die before the person they care for, for which I have not been able to find a reliable primary research source.

Allan Kellehear and the wider costs of caregiving, dying and loss

Professor Allan Kellehear’s work has influenced my thinking about this enormously because he asks us to look beyond dying as simply a medical event affecting one individual. In his public health approach to palliative care, Kellehear draws attention to what he and UK Palliative Care physician Julian Abel describe as the social morbidities associated with dying, caregiving and loss. These can include lost work or school days, loneliness, social isolation, stigma and social rejection, and can sit alongside psychological experiences such as traumatic memories, depression, anxiety, despair and suicide. Kellehear has also spoken about premature mortality associated with these experiences, including sudden death unrelated to the original diagnosis and suicide.

For me, this framing matters because it reminds us that when one person becomes seriously ill, disabled, frail or is approaching the end of life, the effects often ripple far beyond that individual. There may be a partner, adult child, sibling, friend or whole family whose physical health, mental health, employment, relationships, finances, identity and sense of belonging are being altered at the same time. If our systems only look at the person who has the diagnosis, we are missing a significant part of the picture.

When a carer’s world becomes smaller

One of the quieter losses associated with caring is the gradual shrinking of a person’s world. Friends may stop asking someone out because the answer has so often been no, while other people may feel uncomfortable around illness, disability, dementia or dying and gradually disappear. Couples who once socialised together may no longer be able to, holidays become too difficult, spontaneous outings disappear and even accepting a lunch invitation can depend upon whether somebody else is available to sit with Dad for an hour.

Over time, the person providing the care can become socially invisible. People understandably ask how Mum is going or how a husband or partner is doing without thinking to ask the person standing beside them how they are managing in all of this. Human beings need connection, belonging and recognition, and we need to be seen as more than the function we are performing for somebody else. When caring becomes the dominant organising principle of someone’s life, it can become increasingly difficult to maintain the relationships and activities that once supported their own identity and wellbeing.

Relationships change, and not every relationship is simple

I also think we need more honesty around the assumption that every carer is caring for someone they adore or with whom they have always had a warm and uncomplicated relationship. We use phrases such as caring for your “loved one” so automatically that we can inadvertently silence carers whose reality is much more complex.

In my own experience there were times I didn’t even like my mum due to her behaviours. It’s tough to say and reveal and yet truthful. The person being cared for may indeed be deeply loved or cared about, or they may also be someone with whom the carer has a conflicted, difficult or painful history. Adult children sometimes care for ageing parents because they believe it is their responsibility while carrying unresolved childhood wounds, anger or grief, and partners may have had complicated relationships long before illness entered the picture. Caring does not erase the history of a relationship, and, in some circumstances, it can bring old dynamics to the surface with even greater intensity.

Family relationships can also change around the caring role. There may be conflict between siblings about who is doing enough, who should be making decisions, how money is being managed, whether Mum should remain at home, or why one person seems to have become responsible for almost everything.

Resentment can sit beside love, exhaustion beside commitment, and anger can be followed very quickly by guilt for having felt angry at all. We need to give carers permission to acknowledge that emotional complexity rather than expecting gratitude, patience and unconditional devotion every minute of every day. A person can love somebody enormously and still feel overwhelmed by caring for them, and compassion, frustration, tenderness, anger, fear, resentment and gratitude can all exist in the same relationship without one cancelling out the others.

The loss of identity, meaning and the life we thought we would have

There is another dimension of long-term caregiving that is much harder to measure on a survey, and that is what happens to a person’s sense of self when so much of life becomes organised around another human being. A carer may begin wondering who they are outside the caring role, where their own dreams have gone, what happened to the retirement they imagined, the career they expected to have or the relationship they once shared. Someone may have been known for years primarily as Mum’s carer, John’s wife or the one who looks after Dad, while the parts of themselves that existed before caring slowly receive less space.

These are grief questions too. They are questions about identity, meaning, purpose, freedom, possibility and sometimes faith or spirituality. Because there may be no funeral, no sympathy cards and no recognised event marking these losses, carers may not feel they have permission to grieve them, yet the losses are real and deserve to be acknowledged.

Seeing the whole person who provides the care

When we delivered our Carer Gateway caregiver education across regional communities, one of the things I wanted carers to understand was that grief and loss are not restricted to what happens after somebody dies. Loss can be occurring throughout the caring experience, and when we have language for those losses, we are more able to recognise them, speak about them and potentially respond before somebody reaches complete exhaustion.

Rather than waiting until a carer is depleted, we can ask what would make the role more sustainable and what they themselves have had to give up. We can offer practical help rather than simply recommending respite, continue inviting somebody even when they have said no several times because one day they may be able to say yes, cook a meal, mow a lawn, take Mum to an appointment, spend an hour sitting with Dad, accompany somebody through a confusing service system or listen to what the carer needs to say without immediately trying to fix something that may not be fixable.

Employers can recognise that caring responsibilities do not make someone less committed or valuable, governments can continue addressing the long term financial and superannuation disadvantage experienced by unpaid carers, and health professionals can remember to ask about the health of the person providing the care as well as the person receiving it. Families and communities can become much better at recognising that supporting the carer is part of supporting the person who needs care, and perhaps one of the most useful questions we can learn to ask is, ‘What is caring costing you, and what might help?’

For me, asking that question is not about portraying caring only as a burden, because that was not my experience and I do not believe it reflects the experience of many carers. Caring can contain extraordinary intimacy, meaning, humour, tenderness and love. Caring for Mum and Dad gave me experiences and understandings that profoundly shaped who I am and the work I do today, and there are parts of those years for which I will always be deeply grateful.

What I want us to become better at is holding the whole story. We should not have to romanticise caring to honour it, nor should acknowledging its costs diminish the love, loyalty or meaning that may be woven through it. If we wait until the caring role ends to ask somebody what they have lost, we may have missed years during which we could have seen them more clearly, supported them more fully and helped them carry some of what caring was asking of them.