How family can assist someone with a long-term illness
~ Jia Chopra, Intern
It is rare for a person to suffer from illness alone, it stealthily transforms the lives of all those surrounding them. In times of illness where one may suffer with a chronic ailment such as diabetes, cancer, arthritis, kidney disorders or a neurological disease, the family invariably shoulders the burdens of care. From escorting individuals to the hospital, administering medications to managing household tasks and offering an empathetic shoulder, medical treatment is oriented to fixing the body but the recovery process and wellbeing can be greatly impacted by home support.
A most valuable contribution one could make is to lend an ear without judgement or prejudice. Those living with a chronic illness harbor feelings that they never voice-fear of dependency, fear of being a burden, fear of the future that is yet to come. Instead of immediately pouncing on offering suggestions on ‘fixing the issue,’ patience and listening to these fears can instill comfort; often, one feels better at being heard rather than given a solution.
Maintaining dignity and preserving independence is the bedrock of support. One may feel inclined to take over every task out of concern for the patient, but in the long run it leads to helplessness. Allowing individuals to manage their responsibilities and tasks that they still are able to perform can aid in preserving their self-esteem and pride.
It is inevitable for emotions and feelings to change. Anxiety, sadness, irritability, frustration are emotions that can develop as a response to pain, a different lifestyle, frequent hospital visits and financial stress. These are natural reactions to a situation, which if denied and brushed aside by terms like ‘Stay positive,’ ‘Don’t worry,’ “Don’t think so much’ can have long-term emotional effects. Instead of trivializing the feeling, acknowledging them helps individuals realize that they are not alone.
Small gestures of compassion and assistance often mean more than grandiose attempts at helping. This includes, but is not limited to: preparing a meal for them, attending an appointment, reminding them of medications, or simply accompanying them for companionship. It is at these times they realize that there is someone who is there for them.
Simultaneously, care-giving over months and years can be both physically and emotionally taxing. Often family members may overlook their sleep, health, work and social commitments. This may lead to increased stress, exhaustion and burn-out.
Taking care of oneself is not selfish-it is essential! A well-rested, relaxed and physically fit caregiver is more likely to fulfill the role adequately. Open and honest communication within the family is crucial in such circumstances. Discussions about how care needs are evolving, medical decisions about how to proceed, and division of labor can mitigate misunderstandings and resentment. Instead of assuming they know best what is needed, asking them how they feel and want can be particularly helpful: ‘How can I assist today?’ or ‘Would you rather I do this for you or would you prefer to do it yourself?’
Most importantly, the patient needs to be viewed beyond their illness. They still have desires, opinions, interests, and roles within the household that must be respected. Communication should not solely revolve around medical reports, medicines and doctors’ visits. Shared laughter, celebrating achievements, including them in the family discussions about various issues; it all helps them feelvaluedbeyond their illness.
A chronic illness does change the dynamics of the family but it need not change the dynamics of their relationships. A few ingredients such as empathy, patience, communication and respect may go a long way in making the process easier to manage. In the long run, while treatment is aimed at tackling the disease, the love and support of the family may provide strength, resilience and the will to live life.
