Chronic illness causes unimaginable physical, psychosocial and spiritual suffering to the patient. There is also a silent sufferer who partakes in this journey with the patient. This is the unprepared and untrained caregiver-a close family member who becomes an impromptu care giver and shoulders this responsibility along with what he or she is doing already. The subjective and objective burden of care giving causes severe emotional turmoil in the carer.
Though Indians have a strong family system and care giving for a loved one is considered a privilege, the disease burden today will require a more integrated and coordinated approach to care giving.
To achieve this, we need the support of society and the treating physicians who will work together with palliative care centres and caregivers to acknowledge and tackle this growing need.
Along with instilling responsibility, we should also provide respite to the caregiver.
Care for the Caregiver
“A Caregiver is a family member or a paid helper who regularly looks after a child or a sick, elderly or a disabled person”, is what the dictionary says. The reality is that a caregiver can be a woman who is a wife, mother, teacher, homemaker and a family caregiver to her spouse diagnosed with cancer or can be a man who is a jet-set professional, a doting husband, a father and now a carer to his wife with breast cancer. A caregiver could also be an elderly widow supporting her grandchildren whose parents have succumbed to AIDS or a married daughter and a working professional who is trying to provide a better Quality of Life to her father suffering with Alzheimer’s dementia. In Indian homes, most of the domestic helps are women who toil from dawn to dusk, who work to educate their children, who are abused by alcoholic husbands and who ironically end up as silent carers for these men when they develop liver disease. Closer home, if my grandmother is a healthy, cheerful hundred year old today, I know it is my mother’s care giving to which she is indebted. The bottom line is that in today’s world, most of us are caregivers in addition to the various roles we play in life. It is one of the toughest jobs in the world; it is multitasking in its purest form.
Being a family caregiver to a loved one with a life-limiting disease is a responsibility by virtue of a relationship, an experience which is unique with contrasting emotions that both toughen and soften the person. One can never be prepared for this, because the minute a diagnosis of a life-limiting illness is made, the journey of being a caregiver has begun. It starts with shock, traverses through will, determination, courage and fortitude, then culminates in stoic acceptance, loss and sadness. Along with the privilege of helping a loved one is the knowledge that things are never going to be the same again. Along with the responsibility of care giving is the role reversal and along with dependency, the dynamics of the relationship slowly change. Just as water moulds itself into the vessel in which it is poured, the caregiver is expected to adapt without any training.
In addition to these subjective issues of worry, anxiety, fatigue and frustration, the caregiver has to deal with the objective burden which is the physical and behavioural changes associated with the patient thus playing counsellor, nurse, therapist and loved one. A study shows that of the care-giving tasks most frequently performed, personal care was most difficult and household tasks were most time consuming. Family life, school, office work and time with friends were most likely to be affected by caregiving.
The Indian Scenario
But we are Indians, this is not our problem, it is a problem of the West, we may say. True, but only partly, because today though technology has brought us closer, we are moving geographically apart from our extended families. Nuclear families, better access to medical care, increased longevity along with an increase in non communicable and lifestyle diseases have contributed to the growing need for caregivers in India today. Our strength is in the fact that we have a deep-rooted family system but assuming it will take care of all our needs is creating our own roadblock.
Roadblocks and the Way Forward
One of the strongest notions upheld in care giving is that it is intensely personal, private and should not be shared. Accepting the stress and strain and sharing troubles is perceived as betrayal. Sacrifice and being a martyr for the cause is considered noble by society. Besides, how dare you complain about caring for your own? Yes, but care giving is not about being the hero and singularly trudging on. Sourcing help and delegating responsibility energises the caregiver and enables him or her to take some time off or even spend quality time with the patient. For those who can afford it, trained help can be a boon. But to enable the carer take these steps, the attitude of society towards the caregiver has to change and be more accommodating. A study has shown that insufficiency of overall social support contributes to depressive symptoms in the caregiver.
The patient’s treating physician also has a very important role to play. Studies prove that physician’s involvement with families and caregivers improves the quality of life for the patient, eases caregivers’ burden, encourages adherence to treatments and increases patients’ ability to cope with the illness. The clinician’s attention to the caregiver can potentially improve family relationships and, therefore, decrease anxiety in the patient as well as the caregiver.
The treating physician also has a responsibility to guide patients to palliative care physicians who provide symptom care and comfort to the patient along with providing respite and support to the caregiver.
Tips to Make Family Caregiving Easier
The medical fraternity and society need to acknowledge this silent carer workforce by integrating them, training them and interacting with them, not isolating them. A family caregiver today will then be a volunteer for the cause tomorrow and that is how society will be enriched.
Support groups should be created for life-limiting illnesses and caregivers should be invited to share their experiences. As Jai Pausch, caregiver and wife of the late Randy Pausch, concludes in the foreword of her book, ‘Dream New Dreams: Reimagining My Life After Loss’, “ Patients need and deserve support, but it’s time for us as a community to understand the suffering that is shouldered, sometimes silently, by our family members, neighbours, friends and co-workers. We need to offer help to these people, to develop and implement programs at cancer centres and other organisations. We need to empathize with that person taking on the duty of caregiver. Finally, we need to care for the caregiver.”
- Lackey NR, Gates MF. Adults recollections of their experiences as young caregivers of family members with chronic physical illnesses. JAN 2001;34:320-328.
- Song Li-Yu, Biegel DE, Milligan SE. Predictors of Depressive Symptomatology Among Lower Social Class Caregivers of Persons with Chronic Mental Illness. Community Mental Health Journal 1997; 33:269-286.
- Goldberg A, Rickler KS. The Role of Family Caregivers for People with Chronic Illnesses.Medicine and Health 2011;94:41-42.
Latest Publications and Research on Caregivers
- Development of an After-School Day Treatment Program for Children with Severe Emotional/Behavioral Disturbances. - Published by PubMed
- The anatomical locations of postoperative pain and their recovery trajectories following Posterior Spinal Fusion (PSF) surgery in Adolescent Idiopathic Scoliosis (AIS) patients. - Published by PubMed
- Review Article: Unmet needs of children with peanut allergy: aligning the risks and the evidence. - Published by PubMed
- Caregiver Quality of Life Before and After Cytoreductive Surgery and Hyperthermic Intraperitoneal Chemotherapy. - Published by PubMed
- Learning Needs of Patients and Their Caregivers After Ambulatory Surgery. - Published by PubMed
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