The la Caixa Foundation organises the Carers' School: taking care of oneself to take better care of others
- Self-care, the key to better care
- Safe space with a network of support and understanding
- Learning to accompany to the end
Since 2018, the Carers' School of the Programme for the Comprehensive Care of People with Advanced Illnesses of the “la Caixa” Foundation has organised more than 2,000 workshops in which nearly 8,000 people have taken part. María Isabel Ortego is one of them. After more than 20 years caring, first for her parents and now for a friend, a ‘little bell inside’ made her realise that she had to start looking after herself. In the School she has found resources to improve her wellbeing and to be able to care better.
Aimed at family members and volunteers who care for people with advanced illnesses or at the end of life, this pioneering initiative in Spain offers online workshops led by experts who train non-professional caregivers to improve the quality of life of the people they care for.
In these workshops, the different aspects related to care are addressed from a cross-cutting perspective: from essential physical care to the spiritual and social concerns of the people involved or their emotional and psychological difficulties.
Anna Escolà is a psychologist in a psychosocial care team (EAPS) of the programme for the Comprehensive Care of People with Advanced Illnesses. The Carers' School offers users workshops on good treatment and others such as “Person and dementia” and “Caring for oneself in order to care”, the latter dedicated to promoting self-care dynamics with self-awareness techniques.
‘A little bell rang inside me that told me: ‘you are also important’ and I began to think that life had to be more than just being devoted to others. To give yourself to others gives you satisfaction, but there must always be a part of self-care and enjoyment’. These are the words of María Isabel Ortego, carer first of her parents and now of Juan Luis, a close friend with whom she lives.
For Escolà, common expressions such as ‘what do we do now?’ or ‘where do we go from here?’ show the most common doubts of the caregivers she attends to. ‘Often, this uncertainty becomes a paralysing fear,’ he adds. That is why the Carers' School seeks to empower these people by providing them with tools, skills and guidelines, as well as information to help them adapt to their new reality.
Self-care, the key to better care
‘Caring is born out of the love you feel for a person who you want to be as well as possible,’ says the psychologist. However, it is a tiring task and during the caregiving experience there are many feelings that family caregivers often face in solitude. ‘When a loved one becomes ill, the whole family system is affected. You have routines and ways of doing things that are suddenly dismantled,’ she says. For this reason, she believes that the advice offered at the school ‘helps them a lot to situate themselves in a healthier place’ to be able to enjoy care.
Self-care, according to Escolà, is key to exercising the role of caregiver: ‘It is very important for these people to understand what they need to be well and to be able to better accompany patients’. Understanding the diseases they live with, which have ups and downs and relapses, can be fundamental. It is also essential to learn to manage the feelings and tensions that inevitably arise. ‘Fortunately,’ says the psychologist, ’today's children are learning to integrate this emotional sphere of their being, but many older people still repress this part because we come from a stoic model.
The workshops also deal with the relationship with the person in need of care. ‘It is essential to understand the reactions that someone who is ill may have in order to see how the caregiver can reposition themselves and continue with this accompaniment’, says Escolà. According to the expert, it is especially delicate when there is a reversal of roles within family dynamics: ‘Sometimes the symmetry of roles is broken and the children suddenly become fathers or mothers. In cases like this it is important for the caregiver to be clear about their limits and to know what resources are available to them in order to provide good treatment and dignified care’.
Safe space with a network of support and understanding
It is common for caregivers to experience feelings of loneliness. ‘They need to talk about what is happening to them in order to assimilate the fears that arise when living with the uncertainty of the illness. Escolà stresses the great benefit for participants of being able to share their own experiences in a space set up at the end of the workshops. ‘Both those who speak and those who listen have a change of face and the expression of pain is reduced’.
The participants greatly value this space for networking. ‘I was looking for a place where I could express myself, where I could get a bit of support and find other people in a similar situation’, Ortego confirms. This Argentinian who has lived in Barcelona for more than 30 years came to the Carers' School seeking precisely to escape from isolation: ’Listening to other experiences is useful. It makes you understand that it is not something that only happens to you’.
In addition, the links generated in the School for Caregivers often extend beyond the workshops. ‘With some people I have kept in touch because there is a much greater understanding than even with close friends,’ says Ortego.
Learning to accompany to the end
Accompanying a person with an advanced illness is a ‘mirror experience’ in which one connects with one's own fragility and vulnerability. As Escolà comments, ‘the situation is overwhelming because we all find it very difficult to sustain suffering and pain’.
What we do then is activate avoidance strategies: we try not to think about the end of life until it is imminent. In Catalonia, only 1.6% of the population has registered an advance directives document or living will. ‘We cannot imagine ourselves living a dependent and limited life. There is still a lot of work to be done to raise awareness in this area,’ says Escolà.
The School advises and trains caregivers so that they can support people at the end of life. As Escolà points out, during this period ‘it is very important to support sick people in making decisions and for them to feel listened to’. At the same time, family members are provided with information about the grieving process, their understanding is encouraged and emotional expression is promoted.
Beyond the enormous personal challenge it represents, for Ortego this stage of end-of-life care has been a vital experience that has enriched her: ‘Caring for elderly people and helping them to make this transition a little more pleasant has also given me something: it enriches you and gives you a sense of meaning’. And the Carers' School has made her job easier: “It has nourished me with knowledge and helped me to improve my attitude and to feel more confident in my reality”.
Since the Carers' School started in 2018, the response from attendees has been very positive. More than 90% of participants would recommend the workshops to people in the same situation. And 95% say they feel more able to carry out caregiving after their time at the School. Ortego is in no doubt: ‘People should be encouraged to take part and participate because they will receive vitamins, a push to keep going’.