A shared universe › Blog › Caring for the carer · Español
If you are worn out from caring for a relative, it is not weakness: studies show that carers have more stress and more low mood than people who are not caring, and that what eases it most is not carrying everything without help. Asking the family for specific support, keeping some time for yourself and asking about public help all make a difference. Whoever cares for a father with dementia, a partner who is ill or a child who needs constant attention is usually the last person anyone asks after. And they are also the one who needs it most.
The gerontologist Steven Zarit was one of the first to study what happens to those who care for others. In a paper published in 1980 with Karen Reever and Julie Bach-Peterson, he studied relatives caring for older people with dementia and spoke of caregiver burden: the weight, physical and emotional, that builds up over time.
They found something that is still useful today. The burden depended less on how difficult the cared-for person’s behaviour problems were than on the company the carer had: it was lower when other relatives visited the person who was ill more often.
In 2003, Martin Pinquart and Silvia Sörensen brought together 84 studies comparing people caring for frail older relatives with people who were not caring. Carers had more stress and more symptoms of depression, felt less capable and had lower well-being. Their physical health was also somewhat worse, although that difference was small.
The differences were larger among those caring for someone with dementia. If you recognise yourself here, it does not mean you are doing it badly: it is what happens to many people who hold up a load like this.
It is worth listening to them early, before your body says enough:
What Zarit found points to something simple: other people’s company eases the load. A few ideas:
In Spain, Law 39/2006 on care for people in a situation of dependency sets out a catalogue of services that includes telecare, home help, day and night centres and residential care. It also provides for a financial allowance when the dependent person is looked after by their family.
The procedures and waiting times can vary depending on where you live. To start, you can ask at your local council’s social services or at your health centre. In other countries, your GP or local social services can tell you what is available. It is paperwork that can be tiring, but it can bring a lot of relief.
Nearly everyone who cares for someone feels guilt: for getting tired, for getting angry, for sometimes wishing it would end. They are not bad people. They are exhausted people.
Treating yourself with the same understanding you would show someone else in your place can be learnt too. Self-compassion has ideas for making a start.
If you notice that the sadness will not lift, that you cannot sleep, that nothing matters any more or that you sometimes think you cannot carry on, tell your GP. Looking after yourself is also looking after the person you love. In Spain you can talk to a person at the Teléfono de la Esperanza, 717 003 717, at any time. If you are thinking of ending your life, call 024: it is free, confidential and answered 24 hours a day. If there is immediate danger, call 112. In another country, call your local emergency number or a helpline there.
In A shared universe you can light a “For someone” star for the person you care for. And also a “For me” star, for you, who are holding up so much.
A few lines are enough, with no names. Other people will keep it company with a touch or a few words, and you will be able to see how many times they have done so. It shines for seven days, and if you wish, you can keep it lit for another seven.