Before my mother went into hospital, I provided her with a home, paid her bills, prepared her food, took her to appointments and helped keep her clean. There were countless other responsibilities, too: the ordinary things you do for someone who can no longer manage them alone.
Nobody asked me to calculate what any of it cost.
My mother is 84 and has Lewy body dementia. She has now been in hospital for several weeks and is likely to need permanent residential care. Depending on her needs and the placement, that could cost close to £2,000 a week.
The work of caring for her already existed. So did the cost. Much of it was simply being carried by the family.
Through this experience, I have also encountered some extraordinary people. The local authority staff who helped us, the carers who came into our home, and the nurses, doctors and support staff looking after my mother in hospital have shown patience, compassion and a commitment that deserves recognition. When her needs increased, people responded. They stepped up and helped.
My admiration for them is considerable. Seeing their dedication has made me question whether the system around them gives either professionals or families the support they need.
When Support Arrives
Before my mother entered hospital, we had approximately two months of help from the local authority, including companionship and day care. As things became more difficult, carers began visiting three times a day. That support mattered.
But there was an invisible line I could feel.
The approach seemed to be about providing enough help for us to manage at that moment. I was less sure that anyone was looking at everything that might make caring for her at home sustainable over time. More help arrived as her needs increased, but the process felt dependent on circumstances becoming harder before the next level of support became available.
That is a difficult distinction to explain when the people helping you are doing their jobs well. I felt grateful for what they provided and uncertain about what else might have been possible. Both things were true.
Becoming a Carer
Most people become carers gradually. One day you are a son or daughter. Then you are managing appointments, meals, medication, finances and personal care. There may be no clear moment when you recognise that your role has changed. You simply keep doing what needs doing.
Nothing about that process makes you an expert in social care.
You do not automatically understand respite arrangements, home adaptations, direct payments or the different forms of support that might be available. You may be given a booklet or directed to a website while already trying to balance work, family life and someone else’s increasing dependence on you.
Information helps. But someone still has to turn it into arrangements that work.
And if you do not know a service exists, how are you supposed to know to ask for it?
What I wanted was someone who could look at the whole situation with us: what my mother needed, what I was already providing, where the pressure was building and what might become difficult next. Someone who understood the available support and could help put it in place.
Parts of that approach already exist through carers’ assessments and care planning. The question is whether families experience them as continuing, practical help. A family managing today may be struggling in three months. Waiting for them to demonstrate that struggle can mean losing the opportunity to prevent it.
When Social Care Becomes an NHS Problem
I saw another consequence of those gaps on my mother’s hospital ward.
Two elderly women had undergone shoulder operations. Both were medically fit to leave, but their limited mobility meant they needed help with washing, dressing and managing at home. When I encountered them, they had been in hospital for three weeks because the appropriate care arrangements were not available.
We had the expertise and facilities to perform their operations. Arranging the help they needed afterwards had become the obstacle to going home.
Safe discharge requires more than booking a visit. Support must be reliable and suitable for the person’s circumstances. Nevertheless, those women were waiting in hospital for assistance with everyday life, while other people needed the beds they occupied.
That pressure travels through the NHS. Patients wait to be admitted. Staff struggle to find space. Families wait for news. A shortage of support outside hospital becomes a problem inside it.
According to The King’s Fund, delayed discharges cost the NHS in England an estimated £2.7 billion in 2025/26, with nearly 13,000 patients remaining in hospital each day despite being clinically fit to leave. Social care shortages are one cause; community health provision, hospital processes and coordination also contribute.
We talk about needing more hospital beds. We also need to ask what would allow the people already occupying them to leave safely.
The Work That Goes Unrecognised
For families, meanwhile, the costs are often less visible.
There are bills and expenses, but also time, interrupted routines and the ability to organise your own life. Even when professional carers visit, the responsibility between those visits does not disappear.
In my case, that contribution simply existed, as though it were a resource that would always be available.
Carer’s Allowance is £86.45 a week for those who qualify, including people providing at least 35 hours of care and meeting the other eligibility conditions. Many working carers, myself included, do not qualify.
The allowance is not a wage, and a residential care fee covers a different range of costs. Comparing them directly cannot tell us what it would cost to provide equivalent care at home. But the contrast raises a reasonable question about the recognition given to families carrying substantial responsibility.
For someone whose life has become organised around another person’s needs, £86.45 a week hardly begins to reflect the commitment.
Could Earlier Support Help?
My mother’s needs may now be best met in residential care. Advanced dementia can require support that a family cannot safely provide, however much they love the person. A care home can be the right decision, and nobody should be made to feel that choosing one means they have failed.
But accepting that does not prevent us from asking whether better support earlier could help some families keep going for longer.
Could reliable respite prevent exhaustion? Could more suitable help at home make an arrangement sustainable? Could someone who understood the available options help a family before they reached the point of being unable to manage?
We should not assume that every additional service would save money, or that every residential placement could be delayed. We should investigate where earlier support would improve people’s lives and reduce the need for more expensive care later.
The Costs We Don’t Count
That is harder when the costs are spread across separate budgets. The hospital carries one part, the local authority another, and the family absorbs much of the rest. A decision that appears affordable in one set of accounts may transfer pressure somewhere else.
The family’s capacity to absorb that pressure has limits, even when its contribution has no invoice attached.
We can calculate the price of a hospital bed, a residential placement or three daily visits from a professional carer. It is much easier to overlook the son or daughter organising everything around those visits, attending appointments and making sure ordinary life continues.
Then the arrangement becomes unsustainable. Formal services have to take on more responsibility, and suddenly more of the cost becomes visible.
The work was being done before. It simply wasn’t appearing in the same accounts.
Love helps explain why families keep going. It should not become a reason to assume they can keep going indefinitely.
A system that depends on family care needs to understand what that care involves. It needs to ask what the family can realistically sustain, help arrange suitable support and return to that question as circumstances change.
There are difficult constraints. Local authorities have limited budgets. Suitable carers are not always available. Needs can change quickly, and no assessment can predict everything. But those difficulties make early, informed support more valuable.
Throughout this experience, the people caring for my mother have given me reasons to be grateful. Their kindness has mattered to her and to me. They deserve a system that supports their efforts, just as families deserve help that recognises the full weight of what they are carrying.
The NHS, social care and unpaid family carers are already part of the same system. Pressure moves between them whether their budgets recognise the connection or not.
We are very good at counting the cost of care once the state has to pay for it.
Perhaps it is time we started counting what it costs families to keep going before that happens.