"Everyone has an opinion but when you need help, you're the one who's struggling"

In a joint family set-up, free access to caregiving is often a happy side effect. Grandparents drop kids off to playdates when parents are stuck in meetings. Older cousins act as chaperones to parties and favourite aunts sign remarks in the calendar to save their beloved bhanjis from being grounded. But life is not a Sooraj Barjatya film, and when it comes to caring for the elderly, many families find themselves without the means — financial, emotional, logistical — to offer quality caregiving. 

That’s what Anisha Pereira discovered the hard way when the question of looking after her octogenarian mother and brother with special needs fell to her, at an age when she needed to be planning her own retirement. This is her account of how she arrived at the decision to place her mother and brother in a retirement home.

“For some people, the parents are adamant, being in a retirement home is a shame” 

“I have a special needs brother. He’s the oldest. When my older brother got married, I had to move my mum and brother out of the house and into an independent flat. 

It was hard because I lived in the US — I’ve been away from home since I was 15. Realising it would be hard to manage from so far away, I moved back in 2012 to help them settle. 

My mother and brother lived on their own in Goa until three years ago. I tried visiting a few times a year, but my mum was mentally and emotionally weak after moving out of her family home. She went into depression. 

The decision to move out of the flat was largely because of my brother with special needs, rather than my mum. Managing a house became difficult because of her failing eyesight. I was worried about her safety, too, because her hearing was also bad. She wasn’t able to hear cars. At that time, she was 82. 

I’d planned to move them into a flat in Mumbai. But my brother’s special needs were a different factor. I consulted some psychologists who said that living in a new city would be destabilising for him. When he was separated from our mother, he’d get agitated. And getting help in Goa is very difficult.

When I spoke to mum about Mumbai, she was not keen either. She said I’d lived independently my whole life and that she and my brother would be dependent since they were not used to the fast pace of the city. So we should look at a home in Goa. 

One psychologist pointed out that if I happened to pass away before my brother — and with our mum gone — what would happen to him? He needed to be in one place so he could feel settled. That’s when I started to look into retirement homes. 

It was just me handling everything. A lot of my friends and family were divided. They thought, maybe they can come live with you in the US, or you can get a live-in helper. But I wanted to make a decision being sure I believed it was right. I didn’t want to experiment without being sure. 

There is a lot of stigma, especially in India. I’ve always been the kind where I don’t care what people say and think. Everyone has an opinion but when you need help, you’re the one who’s struggling. I won’t get influenced or feel bad about that. Only I know the challenges we have faced. 

I was looking for three years before we heard of this retirement home. My brother had lived in a special needs school in Goa. For two years, he was very happy there; they had lots of activities and trained teachers. Now, there’s a retirement home set up by the same priest. One weekend, a couple of my friends separately asked me if I knew this old age home had opened up. So I called up the priest and made an appointment. I flew down to talk to my family and ask them if they’d like to see it.

I think the older retirement homes, at least in Goa, are lower income. They charge little and have few facilities. The thought people have is they are ‘dumped’ there. The new type of homes coming up are making a difference.

This retirement home has beautiful facilities, like a hotel. In the village we lived in, we didn’t tell anybody that my mother and brother are moving there. I didn’t want them to get influenced by gossip. Within a month, my mum said it’s really nice, and both of them were happy to live there. That’s when we told people they’d moved.

If they hadn’t liked it, I’d have looked for another place and brought them to live with me in the meanwhile. I would have had very few good choices, and moving them to a flat even with full-time help would not be the best solution for them. So I’m really thankful this worked out.

I was also lucky my mum realised we needed to settle my brother. I have a few friends with elderly parents, and there can be a lot of friction and resentment. One friend was close to her mum before. After she moved in, they both found it hard to adjust. No matter how much you love your family or how close you are, when you start living together, it’s an issue. She has three brothers, yet all the thinking and planning was her responsibility. That’s a lot of pressure.

A friend who could have hired five helpers still put her mother in a retirement home because she would be lonely. It’s not just about facilities and living conditions. Grandkids are busy, only domestic help is at home. Even living with family, old people were lonely and isolated during COVID-19.

In the retirement home, they were very strict about COVID-19. I couldn’t visit. Not a single person in that home got infected. When my mother had a fall, I wanted to get a caregiver for physio and really had to convince the priest it would be safe. In my own home in a confined space, it would have been much harder.

It hasn’t been a major change for me because I used to manage their lives and still do. They still call me first, though I’ve told them they have to tell their caregivers. I’m getting used to it and so are they. But I feel a lot better with this support system, knowing there’s someone who will take them to a hospital.

My greatest worry used to be, what will my brother do if mum has a heart attack in the night? He’s like a 5-year-old, not equipped to handle it. When she fell, they called me at 5am. Even though it was difficult during COVID-19, the priest took her for an x-ray and organised an orthopaedic surgeon. It all happened without me being there as I couldn’t travel at that time. 

As someone who’s been through it, my recommendation is to be clear about what you want. Go to a place that’s been established for a few years, with trained staff. Always talk to the other residents and their family members to get the real picture. 

You need to plan earlier. Some people are fit and healthy at 80. Affordability is one thing, as well as planning. These discussions need to happen by the time someone is 70. For me, it was easy because my mum is practical. For some people, the parents are adamant, being in a retirement home is a shame. 

But people are living much longer. They’re running out of money and can’t afford to take a decision even if they want to. I’m 59 and have friends who are already booking assisted living, so in a few years when it becomes expensive, they’ll have a place. They don’t want their kids going through the same challenges.

In India, there are not a lot of retirement homes with these facilities. I understand these cost a lot of money so the total bill is high. For myself, it’s definitely been worthwhile. It’s expensive, but the peace of mind is priceless.”

*Names changed to protect privacy.