Compassionate and Un-fatigued

Compassionate and Un-fatigued

Averil Gomes

We’ve all done the deal, caring that is, for parents, partners, husbands, wives, children and friends, through good times and bad and especially through sickness. We consider it our duty, one that’s unspoken, except of course at Christian weddings when they make you promise under the gaze of God and priest and all those family members and friends who are just dying to get out of the church and hit the reception venue for the booze and food. And then there’s that other lot of people, those chosen ones among us whose sense of duty and obligation goes a step further, to a whole new and prolonged level, placed in the space of caring for members of their family or friends with additional or special needs. It is this segment who we largely and more specifically refer to as caregivers.

I have often wondered what life must be like for them, especially those dealing with loved ones with severe and permanent disabilities or who suffer from schizophrenia or severe depression. Or for those people who tirelessly care for aged parents afflicted with Alzheimers and who cannot love them back because they simply don’t know who they are anymore, even on a good day.

We all know that life and living is a challenge but more so for people who care for others, whether in a professional or personal capacity. The rot can set in and sometimes it does, and we refer to it as burnout or more clinically, secondary traumatic stress disorder.

Some others call it compassion fatigue.

My parents cared for me when I was little, fed me, made sure I did my homework and wore clean clothes, washed behind my ears, got me toys and took me to the movies, just the usual stuff that parents do. And yes they, especially my mother were put to the test at least once a year through my regular bouts with measles, jaundice, typhoid and mumps, sometimes twice over. And it didn’t end there, continuing into my early adulthood with chicken pox and terribly debilitating attack of mononucleosis. I had them all and thankfully my mother by my side. My mum is one of those solid people, the sort who knows her business and is a doctor’s nightmare. But being a stay-at-home mom, no one, least of all me, viewed her as a caregiver. She didn’t either, she was just Ma, taking it all in her stride, doing what she felt was her job and she never faltered.

We grew up. Then my dad got cancer.

So there was mom, at it again, doing what she did, getting into the thick of things and tackling them in her, ‘I’m superwoman and I don’t need your help’ style. Whatever it was it worked for her as she worked with him and for him at times, holding him up and making us all feel as if it was nothing. She was scared no doubt but never showed it, knowing that she would never let him go without a hard fight. I’m sure that if I ever ask her today if she switched off the compassion button or suffered from compassion fatigue through those long years of treatment and relapses and the occasional emergency, she’d probably look at me and think I was nuts. Sure she had her moments when she ranted but then she just dug deep and pulled on, through those months and years of intense stress and physical fatigue, the endless waiting for your turn at the OPD at Tata Memorial, the counseling that she had to give my dad and pouring over endless books on foods that heal and making sure he ate right.

And she won and helped dad win, beating the disease with a combination of grit, God and good old medication. I know it may sound ridiculous to some when I say this but when I need a symbol of strength I just look at my mother.

The doctor on the other hand, at least the first one was clinical, but excellent at his job. I wonder now if he had turned off the feeling switch somewhere, to help him cope with the onslaught of patients and the disease. Cancer isn’t the easiest thing to deal with, even for a doctor. But he was so cold that my dad disliked him and when he finally left for another hospital my dad was relieved. His assistant, a younger, kinder man took over his practice and his patients, patiently answering their queries and never forgetting to ask my dad and I’m sure his other patients as well, how they were doing. He’s the head of department in his specialization at the hospital and works twenty six hour days, but he still smiles whenever he sees my dad at his bi-annual checkup and it helps make the wait bearable.

‘Compassion fatigue’ is such a strange term and I’m struck by its starkness. How on earth can anyone be fatigued by compassion? The idea seems preposterous. So I look it up on the internet and I learn that it is a condition which results in a lack of compassion brought on by physical, emotional and spiritual fatigue or exhaustion that takes over a person faced with a particularly stressful situation, causing a decline in his or her ability to experience joy or to feel and care for others. Sufferers they said can exhibit several symptoms including hopelessness, a decrease in experiences of pleasure, constant stress and anxiety, and a pervasive negative attitude which can have detrimental effects on individuals, both professionally and personally, including a decrease in productivity, the inability to focus, and the development of new feelings of incompetency and self doubt. It said that doctors, nurses and even support medical staff are prone to the condition and build walls to insulate themselves, making us believe that they are uncaring.

It brings me back to the parent looking after his/her schizophrenic, paraplegic or terminally ill child. Or the person caring for their aged parent stricken with Dementia, who thinks that their child is about to kill them and sobs it out to everyone he/she encounters. Or the husband or wife forced by circumstance to give up their job or even work two and three jobs and still care for their disabled spouse at home or one battling a chronic and potentially fatal illness? The truth about compassion fatigue is as plain as the term itself. Occurring in cases where individuals selflessly expend emotional and physical energy caring for people over prolonged periods of time without the hope of receiving any of the same in return, giving them a general feeling of hopelessness. One may still care for the person as required however the natural human desire to help them is significantly diminished and though the phenomenon occurs in professionals involved with long term health care it can also occur with regular people with institutionalized family members, and persons who are primary care providers for patients with terminal illnesses, manifesting itself into symptoms of depression, stress and trauma.

So I’m back to my mum and I wonder now if she suffered too and I’m sure she did. All those times when she looked heavenward and prayed, or the times she snapped at us, or my dad and we snapped back. I always thought she took it all on her chin, insulating us as well from the harshness of hospitals and the disease. Sure all of us, my siblings and I chipped in, accompanying her and dad to the hospital for check-up’s and for bouts of treatment, staying with my dad when he was admitted for procedures, holding his hand and being strong for him. But it was borrowed confidence that came from the fact that Ma had our backs and that she would fix it. Yes I cared, you have to when you are faced with pain, anger and frustration even hopelessness that’s real and visible but she never let us see hers. I must admit that I didn’t even notice if she was okay. I just assumed she was. Perhaps I was just too busy growing up.