Where to find help as a carer: who to turn to when you can't cope alone any more

“How do you manage all of this?”

The GP asked in passing, while typing out a prescription for the mother’s medication. The daughter, who had brought her mother to the surgery for the third time that month, answered the way most people do: “Oh, it’s fine. It’s not that bad.” At home her father was waiting, and he was better not left alone for long; at work there was a pile of unfinished tasks; and in the evening there was a phone call to her brother that she was already dreading. When she left the surgery, she sat in the car for ten minutes before she could start the engine.

“It’s fine” is the sentence carers of ageing parents say more than any other. Often it isn’t a lie — it really is fine, from one day to the next. But when I hear it, I find myself asking something else: who in this family is actually allowed to say that it isn’t fine? Because help for carers does exist, yet people often don’t seek it — not because they don’t know about it, but because asking feels like admitting defeat. In this piece I will try to answer both questions: where you can turn, and why that step is so hard.

Why asking for help is so hard

As a therapist in training in marriage and family therapy, I look at caring for parents through a systemic lens. That means I’m interested not only in how much work one person does, but in how the family has settled who does it. It is almost never a coincidence.

In most families there is someone who has been “the one who copes” since childhood. The one who looked after the younger siblings, who helped mum when things were hard, who didn’t complain. In professional language this role is sometimes called parentification — a child takes on care that should belong to the adults. When parents grow old, this role comes back to life almost automatically. Nobody agrees on it. It is simply obvious who will ring the doctor, who will sleep over at the hospital, who will know which tablets are for the morning and which for the evening.

For the person in that role, asking for help isn’t just a practical question. It touches their identity. If I can’t cope, who am I then? That is exactly why the most reliable people so often burn out — I wrote about this in Why it is the most responsible and reliable people who burn out. They offer help to everyone, yet they don’t know how to accept it.

What research says about carers

Caring for an ill or frail loved one is not only an emotional burden. It leaves traces in the body too. One of the most cited studies in this field is an American study by Richard Schulz and Scott Beach from 1999. They followed older people caring for an ill spouse and compared them with peers who weren’t doing so. Among carers who experienced caregiving as a strain, the risk of death over the following four years was 63 per cent higher than among comparable people without that role.

That figure doesn’t mean that caring for someone is in itself deadly. The key word is strain. Carers who didn’t experience caregiving as a strain didn’t have a higher risk. So the difference isn’t whether you care, but how much of it you carry alone and without a break. A 2003 meta-analysis by Martin Pinquart and Silvia Sörensen, which pooled dozens of studies, painted a similar picture: on average, carers show more signs of depression and stress than people who care for no one, and the differences are greatest among those caring for someone with dementia.

I mention these findings for a reason. When carers think about help, they often see it as a luxury — something they’ll allow themselves when things get “really bad”. Research suggests the opposite. Help isn’t a reward for extreme exhaustion; it is the condition for not getting there in the first place.

Invisible accounts: loyalty to your parents

The Hungarian-American family therapist Ivan Boszormenyi-Nagy described in his book Invisible Loyalties a kind of invisible bookkeeping that runs through families. Our parents gave us life and care; we owe them something. This sense of debt isn’t pathological — it is part of what holds a family together. But sometimes it becomes so strict that any help from outside feels like betrayal.

I hear it in sentences such as: “Mum looked after me, now I’ll look after her.” “I wouldn’t let strangers into the house.” “What would the neighbours say if Dad went to day care?” Behind these sentences there is no laziness or stubbornness. There is love that has become tangled in rules nobody has ever said out loud.

In relational family therapy, in which I am training, we often work with exactly this: what a person believes they owe, to whom, and whether the debt might be repaid in a different way. When a daughter takes her mother to a day centre, she hasn’t stopped being loyal to her. She can be loyal differently — as someone who is by her side, rather than someone who breaks under the weight.

A map of help: from close by to further away

When I ask a carer who helps them, they often think first of one single person — or of nobody. But help almost always comes from several sources at once, and each covers a different part. The doctor won’t bring lunch, the neighbour won’t prescribe equipment, an association won’t sort out entitlements, a therapist won’t bathe your mother. Once you separate these, you no longer have to expect everything from one address.

Below I describe five addresses as I see them. I don’t list entitlements, conditions or procedures, because they change and depend on the municipality and your circumstances — Slovenia’s long-term care system has been reorganised in recent years. So my advice is always the same: ask directly where the decisions are made, and write down who told you what.

The first address: the GP and the community nurse

Your parent’s GP is often the first and most overlooked point of contact. People go there for prescriptions and referrals, but rarely say how things really are at home. That is exactly the information the doctor needs. If your mother can no longer manage the bathroom alone, if your father wanders around the flat at night, if anything has changed noticeably in the last month, say so. The doctor can judge whether treatment is needed, whether medical equipment is available and whether a community nurse who visits at home would help.

There is one more important thing: you have a GP too. If you can’t sleep, if your back hurts from lifting, if you wake up with a lump in your throat, that isn’t “just tiredness”. I wrote about the signs carers most often overlook in Burnout is not laziness: signs your nervous system is asking for a break. When you go to the doctor with your parent, you can sometimes say how you are doing as well.

The second address: the social work centre and the municipality

For questions such as “what are we entitled to”, “who can come and help at home” or “what if home stops working”, the right address in Slovenia is the centre for social work (center za socialno delo). They can tell you what forms of help are available in your municipality — from help at home to day care and residential care — and how to access them. If you don’t know where to start, this is a good first call.

Many people avoid the social work centre because they associate it with poverty or with being monitored. That is understandable, but a pity. Social workers deal with the care of older people every day and often know of options you haven’t yet heard of. Come prepared: write down what your parent can still do alone, what they need help with and how much time a week you currently give them.

The third address: associations and people in the same boat

Some help no institution can provide. It is the conversation with someone who knows what it’s like when your mother asks the same thing for the third time in an hour, or when the father who taught you to ride a bike no longer knows who you are. For relatives of people with dementia in Slovenia there is the association Spominčica, which runs self-help groups and counselling. The Slovenian Hospice Association accompanies the seriously ill, the dying and their families. Alongside many chronic illnesses there are patient associations that also run programmes for relatives. When an illness is incurable, ask the GP about palliative care too — it isn’t only meant for the last days.

Research on support for carers shows that groups and counselling have a modest but real effect on how carers feel. There are no miracles. But there is an important difference between carrying the load alone and carrying it among people who understand what you’re talking about. Many carers tell me that what meant most to them was a sentence from someone who had been through the same: “I sometimes couldn’t wait for her to fall asleep, too. It doesn’t mean you don’t love her.”

With dementia or a long illness there is often a sadness that has no proper name — you grieve for a parent who is still alive. I wrote about this in Grieving someone who is still alive: dementia, addiction, estrangement. In a carers’ group, this grief is often spoken aloud for the first time.

The fourth address: family — but differently from before

The hardest address is often the closest. Sooner or later almost every carer faces the question of siblings: why doesn’t my brother come, why does my sister only phone and give advice, why does everything revolve around me. Family therapists know that at such moments old alliances and rivalries from childhood come back to life — I described them in Siblings, alliances and coalitions: the invisible geometry of a family. I look at this question in more detail in When your brother or sister won’t help care for your parents.

Here I would stress just one thing: help from family rarely depends on goodwill alone. It depends on how the request is made. A general “you could help a bit” tells a sibling nothing. A concrete request — “Could you stay with Mum every other Saturday from nine to five?” — gives them something they can answer yes or no to. Research by social psychologists shows that we systematically underestimate how often other people would say yes if only we asked them directly.

This is how a conversation between two sisters might have sounded (composite, not a real person):

“I always thought you weren’t interested. That you didn’t care.”
“I do care. You just never said what you needed. You always had everything sorted.”
“Because I had to.”
“Maybe. But to me it felt like you didn’t need me there. That I’d only be in the way.”
“I need you on Saturdays. And for you to ring the doctor sometimes.”
“I can do that. Why didn’t you tell me before?”

The role of “the one who copes” has a side effect we rarely see: it tells everyone else in the family that they aren’t needed. When that role loosens, a space sometimes opens up that nobody knew was there.

The fifth address: help for you

The last address is the one carers skip most often, because it feels selfish. Help for you isn’t meant for your parent. It is meant for the person doing the caring — for their tiredness, anger, guilt and sadness. It might be a regular conversation with a friend who doesn’t give advice. It might be a break you take without apologising. It might be therapy.

In therapy with carers we rarely talk only about how to organise the week. More often we talk about why it was always obvious it would be you, what this care stirs up from the past, where your boundaries are and how to set them without losing the relationship. When exhaustion is already showing, it helps to know what’s going on — that is the subject of A carer with no working hours: the exhaustion nobody counts.

Exercise: a map of help in five steps

This exercise takes twenty minutes and a sheet of paper. Do it today, before you next hear yourself say “it’s fine”. You’ll find a more detailed template in the knowledge base under map of your support network.

1. Write down everything you do for your parent in a week. Really everything — from shopping and medication to phone calls, lifts, getting up at night and the worry that wakes you at three in the morning.
2. Next to each task, note whether only your hands can do it. There are usually fewer than you think. Bathing, perhaps. Buying bread, almost never.
3. For each task that isn’t yours alone, write one name or one address. A sibling, a grandchild, a neighbour, the community nurse, help at home, an association. If you don’t know, write “ask the social work centre”.
4. Choose one request from the list and make it concrete. Who, what, when, for how long. “Could you take Mum to her check-up on Thursday at ten?”
5. Say it within the next three days — and notice what happens inside you. Relief, guilt, fear of being turned down? That, too, is information about the role you carry.

If you get stuck at the fourth step and can’t bring yourself to make any request, that isn’t the exercise failing. It is its most important result. It tells you the obstacle isn’t a lack of help, but what happens inside you when you would have to accept it.

When the answer isn’t “more help”

I want to be honest: not every carer’s distress can be solved with a longer list of addresses. Sometimes the answer lies elsewhere.

Sometimes there is simply too much care for home. When a parent needs care around the clock, no combination of siblings, community nurses and goodwill will be enough. Then the question is no longer how to get a bit more help, but whether it’s time for a different form of care. It is a painful decision that brings a great deal of guilt, and it deserves its own attention, not a passing mention.

Sometimes the parent doesn’t want help. You can organise everything, and your father will shut the door on the community nurse and send away the woman from the home help service. Then it isn’t about a lack of addresses, but about his autonomy, pride and fear — and about your helplessness, which needs to be accepted rather than overcome.

Sometimes the system doesn’t respond quickly enough. Waiting lists are real, and there isn’t always a free place. That isn’t your fault and doesn’t mean you asked the wrong way. It means you also need an interim solution and someone to support you while you wait.

And sometimes the distress is bigger than the caring. If you notice that you feel hopeless, that you can’t see a way out, or that thoughts appear that it would be better if you weren’t here, don’t wait. In Slovenia, call the crisis line Klic v duševni stiski on 01 520 99 00 (every day from 7 pm to 7 am) or the Samaritans helpline on 116 123 (24 hours a day), and in an emergency 112. Speak to your own GP as well. This isn’t overreacting — it is one of the forms of help you deserve just as much as your parent does.

What to remember

• Asking for help is hard above all for those who have always been “the one who copes” in the family — not because they don’t know where to turn.
• Research shows that what harms carers isn’t caring itself, but caring carried alone and without a break.
• Help comes from several addresses: people close to you, the GP and community nurse, the social work centre, associations — and help for you.
• Always check entitlements and conditions directly where they are decided, and write down what you were told.
• A concrete request (who, what, when) gets an answer far more often than a general “let me know if I can help”.