A complex role is that of the caregiver, full of uncertainties and doubts: you are not a nurse or a doctor, you are not a psychologist or psychotherapist, yet you are called to be a bit of all of this, with the addition of an emotional and psychological load. very remarkable. Because for the caregiver, the patient is not a patient in more or less serious conditions and with more or less stringent needs, but is a parent, a spouse, a brother, a child. In short, it is who you love.
The meeting with the psychotherapist
The Irene association, which operates at the Regina Elena Tumor Institute in Rome and deals with patients with brain tumors, a disease involving sensory, motor and cognitive disabilities, has set up for the first time this year an educational program of 7 monthly meetings online designed specifically for those who take care of these patients and based on the experience of the Regina Elena neuro-oncological home care team. Each meeting (the first was held in April and the last will be in November) is held by a specialist – neurologist, physiotherapist, nutritionist, psychologist, law expert – who deals with a specific topic: nutrition, motor disabilities, communication disorders , rights of the patient. The next meeting, entitled “” Learning to take care of others and oneself in a balanced way “will be held on Wednesday 12 October and will focus on the psychological aspect (you can register at this link or by writing to [email protected] ; past meetings can be found on the youtube channel of the Irene association).
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Know the disease
“The caregiver of an oncological patient and more particularly of a patient with brain tumor is above all disoriented and his disorientation is twofold: he is of a care type, he does not know what to do, how to do it and how to do it well. And of an emotional nature “, says Lara Guariglia, a psycho-oncologist at the Roman hospital who will hold the meeting:” In terms of care, her main difficulty is the lack of information on the management of neurological disabilities and the practical issues that the disease brings with it. self. For example, how to administer drugs or how to deal with motor difficulties, or a seizure ”.
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Avoid emotional sacrifice
Caring for a person with a brain tumor is certainly in great need of knowledge. “But his needs are also other, because the caregiver of a patient with brain tumor experiences a total crisis – resumes Guariglia – On the psychological level the prevalent disorder is anxiety, while depression is rarer, because he cannot afford to being depressed. That, depression, if anything comes later, when and if there will no longer be any need for him and his commitment ”. In addition to anxiety, an experience that recurs in the emotional life of those who take care of a neuro-cancer patient is anxiety, which in this case we can define as a dominant thought linked to the idea of loss. “In addition to his own anguish – explains the expert -, the caregiver also tends to center on himself the anguish of the sick person and the anguish of the rest of the family, for example of the children when they are around. It is a huge emotional sacrifice that ends up turning into a dysfunctional attitude that is not good for anyone, bad for everyone “. In fact, centering such a great sacrifice on oneself, responding to any need – practical, physical and emotional of the patient – who is without autonomy who is sick, deprives him of the possibility of exercising his residual abilities. “When the sick person can still do things, it is good that he continues to do them – explains the psycho-oncologist – In addition, the sacrificial attitude also negatively impacts on family members, who, relying on the caregiver, lose the ability to process the disease of those who are also theirs. expensive”.
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Look for balance and ask for participation
In short, it takes personal and family balance to manage such a complex practical and emotional situation. “Balance means, for example, committing oneself to continue to have one’s own space for well-being, to seek breaks by leaving the house, seeing friends and colleagues when possible – underlines Guariglia -. A behavior that is not only useful to the caregiver, who thus recharges himself, but also for the patient: seeing that those who take care of him still do things that give well-being, the patient is more stimulated to have a life as pleasant as possible himself. , even in illness. Equilibrium also means learning to ask for help, participation, from the social network as well as from professionals: doctors, nurses, physiotherapists, psychologists ”. However, psychologists are not everywhere in the oncology wards. “It ‘s true, they are not everywhere, the situation is varied, but where they are not – concludes the expert – you can get information at the local health authorities where you can find support”.