On a regular Diwali, I had a burn accident. I suffered about 40 percent burns.
We didn't know what to expect.
It was only after a week that we realised this was going to take time.
My parents hadn’t imagined that they would have to watch their 11 year old undergo grafting, scream through multiple dressings as her burns were cleaned, or that they may have to arrange blood or money for the treatment.
Most of it, they discovered on the go. For 2 months they cleaned me, counselled me, fed me, got medicines, and slept in the hospital.
There was no system in place to help them cope with it. Everything they did, they learnt on the go.
Whatever support they received was based on goodwill and social capital. Of course, we received a lot of kindness.
More than that though we learnt a lot of lessons. Sometimes, I wonder if they ever recovered from it.
I wonder if they were even half as cared for, as I was.
Within a year or so, my grandfather’s dementia began to progress. As the disease deteriorated, he would need help with basic chores.
Professional caregiving was not familiar to us and even for the periods that we had help, my grandfather preferred the familiarity.
He wouldn’t recognise his children or grandchildren very well but he always recognised my grandmother.
So, she became the primary caregiver. As a family, we struggled to come to terms with his illness. No one had prepared us for this.
The doctors that were consulted suggested multiple experimental therapies that could have helped.
There was no definite cure that they knew of, and since there was no cure the only option was care.
No doctor prepared us for that. We had to navigate the changes in his personality, the loss of memory and bodily control, the struggle to maintain dignity and retain autonomy even as his health worsened.
The family struggled to have conversations with him.
The longer you sat with him, the clearer his speech became. The more time you gave him, the more coherent he was, but it required a lot of time and patience.
Both run thin when you are constantly strained mentally, emotionally and financially.
His children and wife struggled to reconcile with his changing behaviour and role.
They also took on most of the caregiving responsibilities which again, they were ill-prepared for.
He was ill, but the healthcare system could not help him much. It took a toll on the family dynamics and again, there was no help available to deal with basic chores or stress later on, grief.
Perhaps, armed with all the information I have now, as a healthcare professional, I can think of a thousand things we could have done differently.
As one of the people that played a tiny role in caring, I remember how lost we often were.
We depended upon a health system that couldn't supplement care if biomedical intervention was not needed.
While support is sometimes available, it isn't always accessible.
In the government hospital I worked at, I saw old women who had never stepped out alone at night get investigations done for their sons at 2:00 a.m.
I saw people struggle to meet their many out of pocket expenses, despite the government schemes. Many had to figure out documentation because they couldn't afford care otherwise.
Several struggled to find blood donors because of stigma.
They stayed day in and day out, without any arrangement for their stay inside the hospital, often taking to the floor for rest.
In Indian setups, the dearth of on ground HCWs(Healthcare workers) is such that the system tends to rely heavily on caregivers- monitoring basic vitals, physiotherapy, administering medicines on time, arranging funds for each therapeutic intervention, everything is on the caregiver.
And it is a thankless place to be in, a patient bystander (patient "party"/"attender") often does not even have an identity within the hospital.
They're referred to only in association with the care recipient.
In chronic illnesses, this continuous strain gets worse. It begins to take a toll on the mental and physical health of the caregiver.
It begins to change relationships and in turn affects the quality and availability of care as well.
Formal caregivers are either difficult to afford or often, not available at all.
Even with a formal caregiver, loved ones tend to be involved mentally and emotionally in care, often way beyond capacity.
The expectation is that caregivers should dig into their reserves of love and empathy and that alone should give them the strength to endure duress.
The truth is caregiving requires support, knowledge and, to put it very crudely, skill- none of which we as a system equip people with.
If we recall the second COVID wave in India 2021, many of us ended up taking the caregiving mantle on a voluntary basis.
The healthcare system was overwhelmed and it was these volunteer networks that helped.
Be it to arrange oxygen, funds, a hospital bed and medicines or to deal with grief and tiredness.
This Pandemic Made Caregivers Out of Many of Us...
...Yet, there was no systemic support for people who had voluntarily worked day in and day out to aid the sick and dying.
People were expected to move on from death and chronic illness and the shared grief by themselves.
Once again, we had to rely on goodwill and instinct for survival with everyone learning along the way.
The problem with these spontaneous shows of solidarity is that it is beyond individuals to truly reach all. It is a stopgap measure and the lacunae are never addressed.
Also, it leaves people burnt out and isn't sustainable.
We have a long way to go to even recognise the efforts of caregivers, let alone support them.
In the meanwhile, we try to make the best of what we can. Caregiving can get overwhelming to navigate.
Here's a primer on what I have learnt as a patient, caregiver and healthcare provider
As far as possible, take shifts. Use these breaks to engage in caring for yourself. Remember to take adequate food and water on time. Arrange home food from friends living in the vicinity to make it easier on your health. Remember to take your own medicines.
Maintain medical records
Summaries are often provided by hospitals during discharge and outpatient slips often contain some details of illness and treatment. Keep these filed Together, preferably in chronological order.
This makes communication with the health set up easier. It will also make it easier to take shifts.
Despite being an overwhelmed and difficult system, it is always worth a shot. The care recipient and caregiver have the right to know what is going on, in easy language.
Leave notes for the next person if you're taking shifts
This can include instructions and questions to the HCWs(in an inpatient setting).
Wherever applicable, keep insurance details handy. Always be honest and clear regarding your insurance with your doctor.
Prepare for out of pocket expenditure. If you know of someone less privileged in need, offer financial help during emergencies. Even so-called free healthcare is expensive.
List out people who can donate blood if and when needed.
Also, volunteer to donate whenever possible.
Don't hesitate to ask for help
Regularly assess your needs and ask for help: from friends, family and strangers on the internet.
Learn more about the illness
It is especially difficult to navigate mental illness in India. Try to find credible sources for this. Often government and WHO websites have health related information. (See list below)
Avoid overcrowding hospitals
Limit guests. Not only is it safer with respect to COVID, it also saves caregivers the trouble of attending to guests.
Seek therapy or community support for your mental health
Address how this makes you feel as and when possible. Remember to center yourself as and when you need to. Caregiving is mentally, physically and emotionally taxing. There is no guilt in taking your own space.
The next time you check in on someone, check in on their caregivers, too. After all, it takes a village to restore health.
Resources for caregivers' support:
For Dementia caregivers: https://mentalhealtheducationnimhans.org/to-carers-of-persons-living-with-dementia-2/
Caregiver helpline for support and grief counseling by Pallium India
+91 7594052605 https://palliumindia.org/2020/10/sukh-dukh-helpline
Caregiver rights for affirmation: https://www.caregiver.org/resource/caregivers-bill-rights/
Blood donors and volunteering platform: https://www.friends2support.org/
(Shivangi Shankar is a modern medicine doctor who writes in English and Hindi. She uses her art as a medium for catharsis as well as for making health and care more accessible for all.)