Aches and pains, headaches and stomach upsets. A downward tendency towards depression, anxiety and stress. Constant tiredness and forgetting to take care of yourself, which makes you more vulnerable to obesity, diabetes, heart disease and infections of different kinds. General self-neglect and disregard for your health. Feelings of irritability, frustration and guilt.
But this is not the bill you pay for having a particular disease; it’s a list of the ailments most commonly experienced by the people who shoulder the burden of caring for a family member. When we consider the effects of a disease, we normally think about what the patients have to go through; but when the suffering is part of a chronic and degenerative process, the repercussions are much greater because it’s often also the carers who suffer, giving up not only their time and energy, but their health.
The carer profile
Carers are people who commit to looking after the basic needs of a family member in a situation of dependency. The carer gives support in basic activities of daily living like dressing, bathing and grooming, eating, moving around the house and using the toilet, but also in instrumental activities like household cleaning, speaking on the phone, taking medication, dealing with paperwork, managing money, socializing with others and getting out and about. Sometimes these tasks are shared by different carers in the same family, but quite often only one carer takes the responsibility for most of the work. In such cases, this person is the primary carer.
Primary carers are typically women aged between 40 and 60 who live with the care recipient and look after them on a daily basis (when the illness is advanced, this may demand up to 12 hours of the person’s day). The carer combines this work with other family responsibilities and is normally not engaged in any paid form of employment. As for the recipients of care, these are most typically one of the carer’s parents, or in a smaller number of cases the carer’s partner or one of their parents-in-law.
Dr Antonio Callén has spent the last fifteen years helping the carers find personally sustainable ways of doing their work and maintaining their own quality of life. “Luckily, things are changing,” he says. “Most often the carers are still women, probably for social and cultural reasons, but we’re beginning to see more young carers and male carers, especially men caring for their partners. Still, the woman carer remains something of the norm and in a survey we launched in April 2013 the participant profile ‘female carer of parents’ filled up more or less immediately while we never actually reached our minimum target in the numbers for ‘male carer of parents’.”
The need for carers to care for themselves
Looking after a person in a situation of dependency is not only physically and emotionally demanding; it also requires a significant time investment, leaving carers fewer opportunities to pursue the working and leisure activities that might benefit their sense of well-being. This effort and self-sacrifice can negatively affect the carer’s physical, psychological and mental health. It is therefore vital for carers to try to be reasonable with themselves about their expectations, not provide care at the expense of their own well-being and understand that this is the only way their work can make the difference. As Dr Callén explains, “The first thing we ask carers to do is look after themselves, because otherwise they won’t be able to help anyone else: feeling good and taking care of yourself equips you to do the same for others”.
Another typical problem is the anxiety of not always knowing if you are doing the work properly. “Funnily enough,” Dr Callén observes, “the carers who most question themselves are often the best carers. It’s all about the demands you make on yourself: the carers who want to do things as well as they can always feel they’re missing the right abilities or resources. We help them stand back and understand the limits of their responsibilities.” Carers also have to learn to delegate and allow other people to share the task, whether these are other family members or paid carers, or the social services.
The Sant Joan de Déu Care School
To help carers acquire the skills and resources to approach their work with greater confidence and less anxiety, Dr. Callén has helped to launch the Sant Joan de Déu Health Park’s Care School, a pioneering centre which provides care for people with dementia but which can contribute to care in the context of various kinds of dependency. Dementia causes memory loss, a gradual decline in some other aspect of cognition like language or space perception, and difficulties with activities of daily living. Emotionally and psychologically speaking, the daily work of a primary carer of a person with dementia can be very difficult, especially when the dependency is extreme and the carer lacks the strategies and resources to stay on top of the job.
The Sant Joan de Déu Care School sets out to provide people with just those strategies and resources. As Dr Callén says, “Carers often experience anxiety because they simply do not understand what they’re up against. We help them understand the illness, accept what it is, acquire a sense of the direction it is likely to take and make the best decisions. And not just about the care recipients but about their own environment, too”. The School offers regular training courses to help carers improve their work and their own quality of life in the form of small group sessions held in a friendly and supportive atmosphere. The sessions are led by professionals in the field, including psychiatrists, social workers, geriatricians, nutritionists, nurses, specialists in communication, spiritual care, neurologists and anthropologists. Carers learn how to deal more effectively with different aspects of their work and the sessions end with a roundtable discussion in which they can compare and contrast their experiences.
In short, the Care School offers carers the basic tools they need to understand their family member’s dependency and attend to it, and it informs them of the social and health service resources at their disposal. It teaches carers strategies to look after their own well-being and offers them the means to create self-help groups to reflect on the reality of their work. “When we consider the religious order of which our hospital forms part, the Brother Hospitallers of St John of God, we see that one of the Order’s most important values is hospitality and this is the spirit behind our centre’s intention to offer such services to the general public. In a nutshell, what we’re trying to do here is support the carers and make them feel supported. And since the School first opened its doors, we’ve seen a decrease in the number of consultations, which may suggest that this multidisciplinary approach to carers and care provision is beginning to have an effect”.
Care is successful when the care recipient’s needs are properly attended to. But it is also essential not to negatively affect the carer’s own well-being in the process. Carers must be able to maintain the physical and emotional strength they need to carry out their work, overcome its difficulties and make the right decisions. And finally, we must also remember that the carer–care recipient relationship can and should be an intimate and rewarding one, in which carers learn more about the abilities and skills they actually have.