The first in our series of stories of NRI caregiving experience, Jyoti Shah, an NRI from Boston, USA, shares the journey of caregiving for her mother in India.
How my mother’s illness unfolded
On 9th August 2015, my mother, who lived in Mumbai, did something unusual. My mother loved following her everyday routine – leaving home in the morning, visiting the temple, and walking to her shop (she used to own a library). But that day she stopped midway, sat down in one place, and called my sister who also lived in Mumbai. She said to my sister, “I cannot walk.”
My sister was confused and so was my mother. They both didn’t know what was happening. My sister and I spent hours discussing over the phone. We realized that my mother was going through some serious health issues. Her ability to see, speak, and walk had weakened. It seemed like a neurological issue and so we decided to consult a neurologist.
This incident occurred on a Saturday and we managed to get an appointment with the neurologist for Monday. However, on Sunday, my mother’s condition started worsening. We feared she was having a stroke and so we rushed her to the hospital where they conducted MRI and brain scans. The results were normal and didn’t point to signs of a stroke, although her motor conditions were deteriorating rapidly.
Finding the right doctor
While the doctors said it seemed like some deficiency problem, my sister and I knew our mother. We had an inkling that something was not right. We wanted to consult other medical experts but didn’t know where to start looking.
Six weeks passed just looking for the right expert, in vain. My sister and I were beginning to get frustrated. We decided to go back to the same neurologist. This time, he suggested a blood biomarker test. The results revealed the possibility of ovarian cancer. Later, an abdominal pelvic scan confirmed it.
I started reading a lot about her condition. We realized that her body was trying to fight cancerous cells, which in turn was harming her motor abilities.
From the diagnosis, we learned that a lot of these changes are irreversible. Once the cerebral degradation starts, it cannot be reversed. Hence, it’s crucial to find it early and control it.
Having lost six weeks to the final diagnosis, my sister and I often wondered – what if we had diagnosed her condition on the first day itself? Would it have made things different or better? These are questions that no one can answer now.
My sister was the primary caregiver for my mother at this stage. Back in the US, all I could do was research online. I wasn’t able to help physically. It was difficult for my sister to manage everything alone, but she did. I made two trips to India during these 18 months before my mother passed away.
My sister had to manage so many different services for this complex disease all alone. At that point, I wished I could have helped my sister or found an organization that could have taken some burden off her.
Although I was less stressed because I knew my sister was there, I felt helpless. I was amongst the lucky few because not all NRIs have a sibling or a close family member to attend to their parents. I’m not sure how other NRIs’ parents manage regular check-ups.
My Mumbai trip
I was pregnant at that time and couldn’t fly down to India easily. But finally I had to because I knew I wouldn’t be able to do much from the US.
Once in India, I was able to do more – organised medication and took care of other small routine needs. We found a caretaker to attend to our mother’s everyday needs, e.g., giving a bath. But that person wasn’t trained for caregiving and so I always had this fear – what if something goes wrong.
The most important goal of my Mumbai trip was to ease my sister’s burden. I tried to keep everything organised and systematic. We required 10 to 15 different kinds of help and services at that time, and coordination was a task.
I realised how difficult it was to get things done in India when I was in the US. Simple things like finding the right doctors and caretakers meant multiple calls to friends and family and doctors. Back and forth calls took up a lot of time and delayed the process. I wish somebody could have managed this for us so that we could have had more time for important things (this is why I am amazed to see what you guys are doing at ParentCare!).
Family, friends and recommendations
When it comes to healthcare, a one-size-fits-all approach doesn’t work. We did get recommendations from friends and family, but it wasn’t helpful. I was looking for suggestions for doctors who had experience in treating patients with ovarian cancer associated with neurological disorder.
Every doctor we consulted had a different opinion. While one suggested surgery, the other told us to avoid surgery considering the age. We weren’t able to gather any information about the success rate of surgeries in such cases. Moreover, most of the recommendations were limited to the location where our friends and family lived in Mumbai. Finding doctors in other cities like Delhi and Bangalore was impossible in this situation.
My mother had to be taken to the doctor regularly. There were times when she was required to go to the hospital lying flat. Hiring an ambulance for every visit was too expensive. A smaller vehicle was too uncomfortable. I wish there were more such transportation services for patients. Even if there were, finding such a service online would be a hit or miss. Moreover, how does one figure out if the service can be trusted?
My sister and I spent most of our time in coordination, organising things for the treatments and on the daily care of our mother. Months passed by just like that.
Final goodbyes and regrets
My mother passed away on 24th March 2017.
The medical journey of a loved one drains you completely. Those 18 months were terrible for us physically and mentally. In all of the organising, I hardly got any time to spend with my mother. I barely had any conversations with her. If I had some time, I could have sat next to her, spoken to her and comforted her.
Many people do not realise that they end up spending all their time in coordinating services, completely ignoring the parents’ emotional needs. Both my sister and I were busy trying to make sure that our mother was okay. In the process, neither of us got a chance to connect with her emotionally.
After she passed away, when I met with my sister, we both had the same regret – we wished we had some more time with our mother to know a little bit more of her story.
The biggest regret in my life is that I did not have enough time to emotionally connect with my mother before she left us. All her life, my mother worked hard to give my sister and me a good life. As a single mother, it wasn’t easy for her. I had many questions for her but could never ask them even though I knew I only had a few months left with her. I wish I had.
Thank you for reading this story. We are a team of NRIs and Indian people who’ve lived abroad and away from family. Now we are growing ParentCare, a startup that aims to help people like Jyoti and her mother. Through our certified partners (2500+ doctors, labs and home care organisations) we can help NRIs arrange healthcare and errands for their parents from across the world.
In our blog, we want to share stories of Indian expats as well as useful information for those caregiving for their family. Please comment below if you’d like to share your experience or if there’s anything specific you want us to write about.
Some major things to keep in mind if you are an NRI and have parents back in India:
- Find people who you can trust because you cannot go through a long medical treatment without trusted help.
- Take help, feedback, and suggestions from people who have gone through similar caregiving experiences.
- Find avenues through which you can do things remotely. It takes away some of the burden of primary caregiving and helps a lot in the long run.
- Do consider emotional well-being as an important part of caregiving for your parents along with the medical treatment. Outsource the smaller services so that you have more time to focus on the more important aspects.
- Caregiving can get exhausting if you do not take care of your own physical and emotional wellbeing. Choose healthy and healing ways to get through the journey of caregiving.
Register with ParentCare for free so you have access to our concierge service. If anything happens to your parents or if they simply need a cake and a bit of emotional support, you can always message us on WhatsApp and we will find a solution. No registration or subscription fees, only pay per service as when you need it.