Swetha (name changed), a 27-year-old schoolteacher from Tamil Nadu, faced a traumatic turn of events when her 62-year-old father was left paralyzed throughout his right side due to a massive stroke. A stroke occurs due to a blockage in blood vessels supplying the brain and requires urgent treatment for complete reversal of the paralysis.
The nearest hospital was 3 hours away, and by the time they arrived, it was too late to effectively and ultimately reverse the blockage in the blood vessel.
Swetha had already experienced emotional and financial turmoil when her mother lost her prolonged battle with cancer, depleting their savings. Now with her father, once a healthy farmer, left dependent on her, Shwetha was overwhelmed. She was uncertain how to juggle the responsibilities of caring for her two children, her career, and now her father.
Sadly, stories like Swetha’s are very common in India, even with the latest advances in modern medicine. Stroke is the second most common cause of death and the fourth leading cause of disability worldwide. For one in five survivors, long-term institutional care becomes necessary, and one in three survivors becomes partially or wholly dependent on their family members, intensifying the burden.
Regrettably, India lacks comprehensive studies about the problems of the caregivers to stroke patients - especially the financial burden.
Based on the findings from a survey, in 2017-18, families were found to be spending an average of INR 40,360 per episode of stroke-related hospitalization. This, however, is just the amount paid directly when seeking healthcare. Along with this, many indirect costs also add to the financial destruction due to the disease. These include loss of wages of patients and caregivers due to absence from work and the cost of travel to the health center, among others.
These expenses significantly add to the financial burden and often go unnoticed. The economic destruction of the disease is frequently disproportionately more on the economically weaker sections of the society.
It has been noted in Western societies that organized provision of care in a stroke unit is associated with better survival, sooner return to home, and better functional independence in the activities of daily living of stroke survivors. Such stroke units contain trained professionals such as occupational therapists, physiotherapists, speech therapists, and dieticians.
However, in countries like India, such resources for rehabilitation are scarce. A family caregiver with no training is called to take on all these roles and carry them out effectively, which tends to overburden them.
If left unaddressed, the burden on caregivers severely impacts their mental health. Studies have shown a higher incidence of depression, anxiety, and social withdrawal in caregivers. Stroke, a major life incident, results in a complete upheaval of their former lifestyle. Caregivers may also develop resentment, frustration, anger, and despair.
Ravi (name changed), a 19-year-old man from Arcot, originally planned to go to college to pursue further education. But his dreams were shattered once his father had a massive stroke that paralyzed the right side of his body and left him dependent on others for care. As the only child, Ravi had to take up the reins to care for his father.
He quit college and worked as a customer service representative to pay medical bills. “Ever since the stroke, I barely even leave my house. Marriage is not an option anymore. Who will want to marry someone with a paralyzed father? And anyway, I can’t burden someone else with my father’s care,” said Ravi. As per Ravi, he was lucky that he found a job that let him work from home so he could provide 24/7 care for his father.
Priya (name changed), a 26-year-old lady from Chennai, has had her life turned upside down after her mother had a stroke. She used to be an anxious woman, and her anxiety has significantly worsened now. “I am all she has. If something happens to me, who will take care of her?” she anxiously questioned. “I kept thinking of this and had a severe panic attack last year in the market. Now I barely leave the house.”
She is aware that she has not been mentally well but has been reluctant to seek any treatment. “My mother’s medicines are already straining my finances. How can I afford to buy even more medicines? Psychiatrists are expensive, and I don't have neither the time nor the energy to keep any appointments either.”
“It is called healthCARE and not healthCURE. Even when a cure is impossible, the care should not stop,” said my mentor once. NGOs like Pallium India, Kerala's leading palliative care initiative, have proved that providing continuous care beyond cure to people is possible. It supports stroke survivors and caregivers via multiple programs and financial schemes.
Their ‘halfway home’ program prepares the patient and caregivers for the long-term impact of stroke. This program provides in-patient rehabilitation to people with stroke and other neurological conditions.
Patients are admitted to a home-like place with a room and a kitchen and taught how to carry out their daily activities. They also receive active physical therapy to help them regain as much function as possible. Once the patient has adjusted to the new way of life, they are discharged and followed up regularly.
Pallium India also provides vocational rehabilitation for patients who have lost their livelihood. Patients, caregivers, or both are taught basic skills that would give them some source of income. Some are helped in starting a small shop, whereas some are introduced to small-scale animal husbandry.
Besides providing financial stability, vocational rehabilitation helps patients live dignified lives. Patients who cannot be rehabilitated in this way and are entirely dependent on others are provided home-based care and free medications to protect them from the financial toxicity of this life-limiting illness. This helps ease the burden on the caregiver’s shoulders.
Based in Andhra Pradesh, Bindu Menon Foundation provides mobile treatment services, dubbed “Neurology on Wheels,” to improve access to stroke treatment. Dr. Bindu says, “I see the ups and downs in the lives of people I treat. I realize many factors influence health, not just medications. Over the years, I have noticed a sea of changes in the patients' and the families' lives. I empower them to stand on their feet to give them the final sense of fulfillment.”
There is an urgent need to include conversations about caregivers in the larger conversation about stroke care. Dr Bindu’s work towards increasing access and awareness to stroke care and Pallium India’s holistic approach reveals that there are beacons of hope for a future where a caregiver might feel adequately supported by the system.
It is essential to learn from such organizations and put in place policies and programs to scale up such interventions that address the vast financial and emotional burdens faced by stroke caregivers. Only then will we be able to help all the people ravaged by stroke - patients and their caregivers.
Edited by Christianez Ratna Kiruba and Parth
Image by Janvi Bokoliya.
