Caregiver health: looking after yourself while caring for someone else

Hours alone do not measure the load. Short but unpredictable help, night-time supervision or a constant fear of a fall can be exhausting. Conversely, a shared and stable arrangement makes even substantial care more sustainable. It helps to separate:

• physical tasks, such as transfers or getting around;
• the mental load of prescriptions, appointments and paperwork;
• emotional availability;
• broken sleep;
• juggling care with work and children;
• isolation and finding it hard to ask for help;
• the sense of responsibility when things change.

In France, for example, the Drees, the statistics office of the health and social affairs ministries, counted 7.1 million caregivers aged 5 or over in 2022. Three in ten were caring alone, with no family, volunteer or professional support, and six in ten were working, looking for work or studying. Figures like these describe a population; they say nothing about what one person is going through.

If fear of a fall fills your days, our article on fall prevention for older adults covers what can be done at home, together with the person you care for.

Fatigue, irritability, poor sleep, withdrawing from others, pain, forgetfulness or feeling overwhelmed can have many causes. On their own they are not a diagnosis of burnout, depression or anxiety. They are, however, a reason to see a doctor when they get stronger, last longer or start to affect daily life.

The CDC suggests telling your own doctor that you are a caregiver; health care providers may also know of support groups. A doctor can then look at your sleep, mood, pain and medication. If your own care has been postponed, a preventive health check-up or a review of your adult vaccination schedule is a good way to pick up the thread.

If there is immediate danger, call your local emergency number. If you are thinking about suicide, or are worried about someone, crisis lines can help: the 988 Suicide & Crisis Lifeline in the United States, the 3114 in France.

Keeping track should lighten the load, not add a task. Once a week, four questions can be enough.

This note helps you prepare a conversation with your doctor, your family, a social worker or a respite service. It is not a score: standardized caregiver burden tools are meant to be interpreted with a trained professional.

Respite is more than an occasional break. It can mean a short stay or day care for the person you look after, help at home, a family rota, a support group, carer training or time protected in your week. The CDC notes that even a few hours of respite a week can improve a caregiver’s well-being.

Many countries offer a formal way in. In England, for instance, any carer over 18 can ask the local council for a free carer’s assessment, which looks at how caring affects their physical and mental health, work, free time and relationships, and can lead to someone taking over so they can have a break. Elsewhere, your doctor, social services or a caregiver association can point you to what exists locally; check eligibility, waiting times and cost.

A continuity plan, written in advance, can set out:

• who to call if the caregiver falls ill;
• where prescriptions and key contacts are kept;
• which tasks can be handed over, and to whom;
• which signs mean calling a doctor;
• the essential routines of the person being cared for;
• the limits the caregiver cannot go beyond.

Keep it up to date and available only to the people who need it. Being a caregiver does not automatically give you access to all of someone’s medical information: the person you care for stays involved, as far as possible, in decisions and in how their information is shared. Our article on the personal health record explains how to share only what is needed.

A working caregiver may need more predictable hours, a temporary adjustment or remote work where the job allows. You do not have to tell your manager about your relative’s illness: the conversation can stay on your availability and on how the work is organized.

Some countries provide dedicated leave. In France, the caregiver leave (congé de proche aidant) is open to every employee: without a collective agreement, it lasts up to three months, renewable within a limit of one year over a whole career, and with the employer’s agreement it can be split or taken part time. It comes with a daily allowance.

A health program offered by an employer should never become a way to learn about employees’ family situations or health: the safeguards to expect are set out in our article on employee health privacy.

Bring a short list: symptoms and how long they have lasted, sleep, activity, medication, alcohol or tobacco, care you have put off, and the caring tasks that weigh most. Say what you want from the visit: an assessment, help with sleep, treatment for pain, a referral, or simply a prevention check. Our guide on how to prepare for a doctor’s appointment walks through the method.

Everyone keeps their own history, their own record and their own consent. With MyTwin for patients, your reports, test results and treatments sit in your own record, in a single app: you walk into the appointment with your history, not only that of the person you care for.