This pandemic has accentuated the challenges that family caregivers go through as they try to balance jobs and taking care of the elderly and other dependents.
E. Vijayalakshmi Rajan draws upon her experiences to speak about these challenges.
One of the untold stories of this lockdown is of the family caregiver to the elderly, to bedridden parents, to parents suffering from Alzheimer’s, to children with special needs, siblings in wheelchairs. The list is a long one.
Most of us have spent the months of lockdown bemoaning the ban on part-time helpers entering our residential complexes. The current lockdown in place in Mumabi and across many states of India is more relaxed, but most people are still reluctant to get in part-timers, especially when a majority of the population is still not vaccinated. Most of us in cities especially, are heavily dependent on domestic help who come in to cook, clean, dust and take care of our children. So those without live-in help are having to clean and dust and mop and cook, while balancing working from home. Tough times, and I truly sympathise as these are jobs which we are no longer used to performing.
But have you thought of the plight of the caregivers who single-handedly care for their ill and elderly dependents? My empathy is reserved for them. Before Covid-19, most such families had family members who dropped in from time to time to help, or the more affluent ones employed nurses or attendants in shifts. In the case of children with special needs, there may be a trusted help who knows the child’s schedules, moods and how to interact with the child. What such support staff does is give a break to the caregiver. It can only be a break, as unlike house work which can be neglected for a day or two, taking care of such dependents is a 24/7 job. Their health, their medical supplies and necessities, need for advanced care like oxygen, their sleep patterns, and their moods especially, have to be constantly monitored. It’s a thankless job, as often the caregiver is the target of the patient’s ire and changing moods.
The caregiver’s job cannot be slotted. A caregiver has household and financial responsibilities and often a job outside of home. When they have to give extra care to a parent or a child, it’s not just an extra job they have to perform. There is the constant emotional toll of seeing a loved one so utterly helpless and dependent. In the case of patients suffering from any form of mania, or Parkinson’s, or Alzheimer’s, it gets worse as you watch from close quarters the degeneration of what was once a bright mind. It’s like seeing the sun set on someone, leaving behind a forever twilight. Sometimes, there is nothing left to love, except the memory of what once was. Such perverse emotions take an inhuman toll on the caregiver. Under such circumstances, taking care of the dependents is, as it is, a herculean task. In the current Covid-19 scenario, with not much help coming in, it’s a traumatic responsibility.
My heart goes out to those I know are struggling daily, trying to keep their sanity in these trying times. How can we help this small but extremely significant population?
How can we help?
From personal experience I know that there is no one really listening to a caregiver. It’s assumed that if the caregiver is able to hire good help for the patient then all is good with their world. Absolutely no one notices the emotional wreck the caregiver often becomes seeing the daily degeneration of a parent, for instance. Suppressed feeling cause stress which in the long-run can fatigue you beyond belief.
A series of support groups and check-ins of such caregivers is a must. Such support has to be organised at the local level – starting from the general physician (GP) as often the ‘family doctor’ is the first line of medical call. Indeed, I would call my mother’s GP before I call her neurologist to seek medical help. This particular GP has nearly 25 geriatric patients in the neighbourhood in his care, many of them bed-ridden and some in advanced stages of dementia. Wouldn’t a network of such GPs be able to organise support groups for caregivers or even for other family members to sensitise them?
Dissemination of credible information is another area of concern. I have sought answers for why Parkinson’s causes not just physical degeneration but also cognitive. What triggers the intense hallucinations in such patients? Why do they occupy different realities? Maybe the support group could be a place to address such concerns?
Being able to organise reliable help and source essential items like hospital beds, walkers, portable toilets, oxygen etc., is another critical aspect of such care. But there is no centralised list or organisation which can help to source these. During this pandemic, it has been that much tougher. We do have many nurse/attendant service providers, but as most things in India, these range from the completely unregulated to the extremely niche, expensive providers. If we could put in place a system where such ayahs/attendants/nurses are given skills training, regularly updated about patient care, and a reliable directory of such people is maintained, it would be so easy for the caregivers, even in pandemic times.
I know it is easier said than done in India where desperate poverty often drives people to take up jobs they are ill-equipped for. In the past, complete rookies have landed up at my doorstep saying they want to take up ‘patient care’ work – not because they are equipped to do the job, but because they believe there is more money in patient care! Never mind that they have no clue how to turn a bed-ridden patient in the bed, an essential skill to avoid bed sores. Or give a sponge bath to such patients.
The job of the caregiver is an emotionally taxing job. It is time someone listened to their silent pleas for help.