Bringing up Mum & Dad: A Caregiver’s Story

What is it like to become a caregiver all of a sudden? And how do you cope with the enormity of it all? Moumita Ganguli shares a very personal and honest account of her on going experience as a caregiver.

Never did I imagine that I’d have to be my parents’ parent, but early in 2014, that’s what I became.

That was when my father had a stroke and my mother was diagnosed with Alzheimer’s, and my whole life changed. I quit my job – just for a while, I thought – and moved from the home I’d carefully created for myself in Bangalore to Delhi where my father was born and where he insisted he would die because he would never leave.

It was the worst year of my life.

As the consequences of my father’s stroke sank in, and as I grew more familiar with the symptoms of Alzheimer’s and understood the disease better, I realised that when I plunged into the role of caregiver, I had made many rather blithe assumptions.

For instance, I had assumed that I wouldn’t be the only one taking care of my parents – certainly I’d do the bulk of it, but I’d have plenty of help because I have four siblings – but I turned out to be wrong. Only one of my siblings flew to Delhi whenever we needed help. Two of the others had caregiving of their own to handle (small children). And the fourth sibling has never been available.

I also assumed that once I got things sorted, I’d be able to work again. After 10 years of marking time in one position, I had just climbed to a level in my career that would actually take me to the top – provided I’d keep hard at it for the next three or four years. And then I had to quit.

Don’t worry, I assured myself. Within six months, you’ll be back at your desk and that’s not a long time to be away.

But within three months, I knew that only a miracle would get me back at work again. Two things worked against me. For one, I needed good caregivers for my parents. But no one, not even doctors and nurses, could recommend a decent nursing agency. Nevertheless, I tried. I interviewed about 60 women, all of whom appeared to have arrived in Delhi straight from the middle of nowhere. Language was a problem. Concepts like hygiene were a problem. Complete unfamiliarity with modern life was a problem – not one of them could use a phone, some couldn’t even light the gas stove. I couldn’t leave my parents with them and go out to work.

Problem two – the clincher – was my mother’s fear of non-family people. There was no way, none at all, that I could abandon her for eight hours a day, plus commuting time.

So I worked freelance from home, earning about an eighth of what had been transferred to my salary account before. My career ambitions? Bye bye. From now on, I was in charge of the household, the household finances, the dispensing of medication, the making of doctors’ appointments, the instigation of wills and powers of attorney (just in case), the cleaning of the consequences of incontinence, the cutting of toe nails, the shampooing of thinning hair, and many other things that weren’t going to get me anywhere in my career.

And then there were parenting issues. I had become my parents’ parent, but my parents didn’t like that at all. Not so much my mother. I think she was actually relieved that she didn’t have to be responsible for a family any more. But my father was 81 years old and thought he was a sprightly 40. How on earth was I supposed to keep him safe and well when he refused to do anything his doctors had ordered? How was I going to be his authority figure, when he had been my authority figure all my life?

I was so stressed by this sudden, all-encompassing change in my life, that I stopped looking after myself. Anxious all the time about my parents, I stopped eating, slept badly, and stopped reading. I got panic attacks every time I had to talk to anyone including my dearest friends, and sank into a clinical depression that even Prozac couldn’t sort.

But that was last year.

This year, I’d still rather not recall last year in sharper detail than a blur, but I acknowledge that I learned a lot about caregiving from it.

I learned that a career isn’t everything. Till last year, I had defined myself by what I did at work. Now, I’m happy to work sincerely for the money I need (and as I build my freelance reputation, I’m actually getting close to my last full time salary) but I will not give my job my whole life.

My life belongs to my parents now, but again, not my whole life. I’m still on Prozac and can’t spare the time for counselling, but I know now that the only way I can take care of my parents is to take care of myself. If that means abandoning them to the television in the evenings while I curl in my bedroom with a book, well, that’s what it means.

I learned that when I need help, I must not wait for it to be offered. I must scream for it, and when I do, it will come. So much help. So much support. So much kindness. It’s unbelievable.

I’ve learned that sharing caregiving problems with other caregivers takes my mind off my own woes and makes me more compassionate than perhaps I’d been before. I’m single and I have no children, the only thing I had to give up was my career. But a fellow caregiver I met has children, a travelling spouse and two incapacitated parents with expensive medical needs. She can’t afford to give up her job and try and work from home. She needs all the money she can get and she is exhausted and worried about her children and the state of her marriage, and just this side of a nervous breakdown. My life is easy-peasy in comparison. If she wants to cry, I listen.

I’m still anxious about my parents’ health, but I learned how to build a support system even with part time domestic help. I visit hospitals close by and check out their emergency rooms and other facilities. I get the hospitals to give me the phone numbers of reliable ambulance services, reliable visiting nurses and reliable chemists. I’ve built a relationship with a local chemist so that now, whatever I need, whenever I need it, it’ll be procured and delivered. I have miraculously found doctors I can trust even though they won’t visit. I have neighbours and friends close by whom I can call in an emergency. I feel more in control.

I’ve learned that when it comes to becoming the authority figure to an authority figure, there’ll be arguments and fights, sulks and disappointments, but really it’s the same as establishing yourself as the boss in your career. If you have to be tough, you be tough. Which is why my father will not die in Delhi where he was born. He will die in Bangalore where I have moved them because in this city I have a support system that will support me so I can support my parents.

Mostly though, I’ve become used to this. So when my helpful sibling offers to visit so I can take a holiday, I say, just now, no. I’ve become a parent to my parents, and it’s frightening, very guilt-inducing because you never think what you’re doing is good enough, and terribly stressful. But somehow, it’s extraordinarily delightful to be with my parents again – in a way that I never had any idea could exist.