Hub:Link is an initiative to showcase a new product, program or initiative that can have a positive impact on longevity.
Over the last couple of years, I have had the opportunity to interact with entrepreneurs and business leaders building products that can have a positive impact on ageing, and prepare us for a longevity future. Some of these solutions do not reach a wider audience, and moreover, people that could potentially benefit, often never hear about them.
The first product featured is Samvedna’s recently launched MAP tool.
Neeraj Sagar is the founder and CEO of WisdomCircle. Launched in January 2022, WisdomCircle.com is building a technology enabled marketplace for people to find meaningful things to do post-retirement. Although currently focused on India, Neeraj aims to build WisdomCircle into a global company, and has assembled a team of 16 people to join this mission. Conceptualized during the pandemic, Neeraj attracted lots of early supporters to join this journey including anearly stage venture capital firm, and got the ball rolling on WisdomCircle early this year.
Neeraj is a seasoned executive and has worked with some of the most sought after firms in the world. Until recently, Neeraj was senior partner at Egon Zehnder, a reputed global executive search firm. He has also worked with McKinsey and BCG prior to that. An alum of Stanford University and University of Chicago, Neeraj is also the co-president of Stanford Angels and Entrepreneurs in India, and has been working closely with the startup ecosystem for many years.
This interview has two stories – one of Neeraj’s personal transition from a corporate leader to first-time entrepreneur, and WisdomCircle’s mission to build a platform for retirees to stay engaged and contribute their skills to business and society, at the pace they want.
Neeraj, one of the things I remember from our first conversation was funny personal anecdotes about early greying. Can you take us through your journey from the first grey hairs to WisdomCircle?
Mahesh, I greyed very early and used to colour my hair for many years. I decided to stop colouring about 8 years ago, and when I stopped, I realized ALL of my hair had gone white. Suddenly I started getting treated very differently. I would always get discounts at pharmacies before my even asking, a seat on the bus at the airport, and special lines for seniors that I would be ushered into. I had mixed feelings as this was happening: I was feeling good about the respect I was getting but started feeling that I was nearing the end of my professional line in the way people looked at me. I remember one of my colleagues, who was five years older than I was, asking me how many years I had to retirement.
In a way, I started getting a sense of what it feels like to be looked at and treated as old. While this was happening, a lot of people who were retiring would come to me for advice on what they should do once they retired.
You turned 50 last year, were a senior executive in a reputed firm, and had a lot going on professionally, and quite likely, financially. Yet, you chose to turn entrepreneurial fulltime. What was the decision-making process like? When did transition begin for you?
The pandemic got me thinking quite seriously about my purpose. Having seen what happened during the pandemic also got me to realize how short life can be, and this idea that I will do something entrepreneurial ‘one-day’ was getting pushed out. A lot of my close friends had seen my lifestyle of continuous travel, always ‘on’, and started edging me to try and do something bigger and more purposeful. This coupled with a 100% support from my family to do what I want to do – and them telling me that they have got my back – well that pretty much got me to make up my mind that I had to do this and do it now.
I have also been studying the subject of aging and longevity for the last 4 years and I must have read about 25 books on the subject, interacted with many people in the space around the world, taken courses on things such as Cognitive Brain Health, Epigenetics, AgeTech, etc and I just knew this is the ecosystem I need to be a part of for the rest of my life, and do my bit.
I must say I had many many more people cheering me to do this, than the cautionary tales that were coming my way.
Neeraj’s decision making process
Urge to do something bigger and more purposeful
Decide to pursue entrepreneurship as the vehicle
Engage with family openly and plan ahead
Invest time in understanding the ecosystem and subject
Exit current role with mutual respect and support
Find early supporters to write a check
Get cracking on the challenge – learn, unlearn, learn…
Entrepreneurship is tied to risks, and comes with the possibility of failure. For somebody that was embedded deeply in the professional world until recently, how did this transition play out? How did you prepare yourself?
You know the first thing me and my wife did was that we sat down and did our financial calculations, looked at our debt, and spoke to our children.
Then I spoke to my younger brother, who is a doctor, and essentially told me ‘go ahead bhaiya and do what you have to do, and don’t worry, I make enough and if something doesn’t go as planned, I am there’.
On top of this, my firm where I was – Egon Zehnder – also told me that I could come back anytime I wanted to. And then all my friends started reaching out saying they want to invest in my company. When I thought of all of this as a collective, I just felt blessed and I told myself – if not now, when?
You are attempting something very interesting, to bring the wisdom of retirees to the workforce, and you even have a name for them – WisGen (aka the Wisdom Generation). Where does WisdomCircle fit in their lives? Are we talking full-time and part-time jobs? Or is it much more than that?
Mahesh, we use the term #RetiringRetirement sometimes in our posts on Linkedin. What we are trying to solve for is – people working for as long as they want to work, at the pace they want to.
Our mascot is a Turtle. Remember the story of the Hare and the Tortoise that most of us read when we were young? I tell people, we are solving for the Tortoise and not the Hare. The Tortoise lives longer, is wiser, and operates at the pace it wants.
Our purpose is much more than that. What we stand for, and where we fit in the world is – doing our bit to reduce the rate of cognitive decline in the world, so we can help reduce the rates of Depression, Dementia, Alzheimer’s etc.
When we started the first thing we did was we spoke to hundreds of people who had retired or were thinking of retirement to really understand the problem.
Quotes that stood out..
"There is a general feeling that retirees are expendable resources that have run their course"
"You slowly become invisible as you age"
"How do I fill the empty space"
"A source of income makes all the difference on how a retiree is treated"
"I am retired but I am not old"
"If I work, nobody should put pressure on me"
"I won’t work for anyone now, I work for myself"
"I do not want to be a liability to anyone"
"Out of sight, out of mind"
"I do not want to look at the clock and run anymore"
"In India we like permanency, in our jobs, in our marriage, in our house.. But retirement disrupts that."
We are talking primarily of part-time gigs that range from a few months to say a year or two, that accommodate people wanting to work say 2 hours/day or 2-3 days/week, ie at a pace that suits them.
Join Now: One Million Teachers and Mentors
A lot of people want to teach and use that as a way of giving back and sharing their wisdom, but do not know how to go about it. Incidentally we recently launched an initiative called ‘One Million Teachers and Mentors’, where we want to create a million teachers of retirees, and then some.
We also have a dedicated team focusing on the retirees from the Armed Forces to help them find meaningful roles that suit their real skills, and not just administration or security as most tend to look at this pool for today. The skill sets of retires from the Armed Forces is barely understood by the civilian world, and we want to change that to help our Faujis.
Let us talk about jobs. You launched early this year, with a 7-minute survey form, to invite folks to sign up for potential opportunities. On the other end, you have been busy building out the demand pipeline. Any insights to share at this point? How do you plan to use tech at enable this process?
Demand creation is one of the biggest challenges why people have not been able to come up with solutions yet. Specially in our country where everyone is thinking primarily about younger people, the retirees have not been given the focus.
Interestingly we are finding that demand absolutely exists but needs to be unearthed. We are working on this and have already had very good successes, if you see the roles on our platform, with many more to come. The one question we ask for creating demand in organizations is: “Tell us about a problem you want to solve for which you either do not have resources (people), or the skills”.
Other than teaching roles which I talked about earlier, we are also approaching demand creation in a structured way in the non-profit sector, which can benefit immensely from this Wisdom pool that exists.
On Technology, well the answer is simple, this is the single most important piece that will allow us to be a product company vs a services company. We want to impact millions of people and there is no way we can do that as a services business, so Technology is absolutely the key. We are further refining our product and we will continue evolving as we go along and learn. We have a rockstar tech-lead and are continuing to invest in building a world-class tech team. The work we are doing in Tech is something we will share with everyone at the right time.
Can you share a bit more about your team, and also, the culture you are attempting to build at WisdomCircle? What are some of these experiments?
When we started the company, we started by hiring interns, and hired 12 interns from Ashoka University. The research interviews were all conducted by them, and the depth of insight we have today is from the work that they diligently and collectively did.
We have an amazing set of individuals who have come together. Every single person in our team has someone in their immediate family who has gone through retirement and therefore understand the problem. Incidentally some of our parents are also helping us test our product to check if it resonates with them, and are deeply involved in helping us craft the solutions.
I am so proud of the team we have been able to build so quickly and every single one of them is special. Every person on our team was known to someone and we just reached out and asked them to join us in our journey, and they agreed, for which I am very grateful. We also have hired retirees in our team, and they are outstanding in terms of their commitment, their advise, and their care – thus reinforcing to us what we are trying to do for others.
We do not have an office, our teams are distributed across cities, but we all meet face-to-face at least once a week in Bangalore in a co-working space, with the others who cannot make it in person joining over Zoom. People can work from wherever they like. The one rule we have is that if there are three or more people working together, food is on the house.
We continue to experiment with different ideas on how to support the WisGen, but our current focus is very clear – we want to play our part in assisting them find meaningful ways to continue contributing to the world. We want to be the largest and most trusted platform for retirees in the world.
If I am WisGen, somebody that has retired, how do I prepare myself to re-enter the workforce? How can WisdomCircle help in this journey?
As of now, please visit our website at www.WisdomCircle.com and sign up for early access, so you can see the roles we have listed which we will continue to add to.
We are also in the process of updating our website, as well as strengthening our tech product. You will hear much more about us over the next few months.
Rustam Sengupta is a serial entrepreneur who is extremely passionate about senior care technology, climate change and renewable energy – and wears multiple hats. He is the founder and CEO of Tuktu Care, an on-demand marketplace that connects aging adults to local providers and companions, in Canada.
Prior to starting Tuktu, Rustam worked as a Director with Canada’s leading clean tech funding organizations (SDTC), and Adjunct Professor at the University of British Columbia. Before moving to Canada, he was a successful entrepreneur who created one of Asia’s fastest growing solar mini-grid companies (www.boond.net). Rustam is an MBA from INSEAD and started his career in finance with Standard Chartered and Deloitte.
Tuktu brings new tech to an old industry. Started in the Vancouver area, Rustam and his team have established a working model that has the potential to scale across the region, and elsewhere. Apart from generously sharing his experience and thoughts, Rustam believes in the importance of communities as stakeholders in Tuktu’s evolution.
Rustam, so glad we get to connect again a bit more formally. When our paths crossed more than a decade ago, you were setting up micro-grids and solar rooftops in rural India. Fast forward 2021, you founded Tuktu in Canada, to solve challenges faced by older adults. Tell us a bit of the Tuktu backstory and what it does.
Thanks, Mahesh, for reaching out to me. It’s always a pleasure speaking with you.
As you mentioned, my first entrepreneurial venture was Boond – one of India’s first solar mini-grid companies and that experience gave me the chance to make an impact firsthand and understand how we can create business that do good while making money. Today Boond has over 20MW under its belt and employs so many people that I feel proud and satisfied.
I moved to Canada in 2016 as my wife wanted to pursue her PhD at UBC. Being outside India, I think about my parents a lot, and also realized how sending money and planning those occasional trips to India were not enough. As any kid of my generation, I feel the urge to do more. My parents are super independent and have led a very active life, so watching them struggle for small things – like setting up the computer or zoom to talk to their grandkids, going to the hospital or the temple or helping with documents etc. was very painful for me. I realized they didn’t want full time physical care but more companionship – people who they can trust and who can help out on demand – just like family.
Healthcare, on a broader level, has seen amazing innovations (and increased access) and thus my focus was on building a support ecosystem, something than can make their life easy, convenient and joyful. I decided to jump in and explore if I can do anything about it. I looked at many companies and innovations in the west and in India and came up with Tuktu. In a way, it emerged out of trying to solve for something in my personal journey as an adult with aging parents.
Tuktu today is a reality, and I am proud that we are a mission-driven company and solving for a problem that matters today, and more so in the future.
At a basic level, we connect family and friends interested in supporting the needs of their aging loved ones to their neighbors for lifestyle support needs – like grocery runs, light housekeeping, rides, gardening, kitchen assistance, technology help and companionship. We emphasize security, and ease of use, and employ an intelligent matchmaking algorithm to ensure a smooth, safe, and happy engagement while providing families with a better understanding of our users’ needs and challenges. Our goal is to provide care and peace of mind with a support platform that allows care recipients to live in their own homes and lead a fulfilling life for as long as possible.
Recently Ratan Tata invested in a companionship-focused startup in India, and obviously the news received a lot of attention. I personally find Tuktu quite fascinating and unique as it solves for the care problem in a smart way – a combination of technology, local community participation and personalized services – with a model that can scale. Can you tell us about Tuktu’s services, and how they have evolved since you started?
Given our global and collective experience over the last two years, there are two core human elements that came to the forefront – one, social bonds, be it friends, family or community, are as important as any other; and two, there are some amazing folks willing to go the extra mile to make others’ lives better. Even with travel restrictions and such, there is a shared understanding among people across boundaries, and this reset in our otherwise busy and fast-paced lives, attracted people to Tuktu. While I hope humanity doesn’t go through such a crisis again, we have an opportunity to build new models of care and companionship.
We started with a few essential services that we got from our customer discovery. For example, driving and picking up people from the hospital or being with them during these visits is very high on the list. You can imagine the relief that a person like me or you would get if we knew that someone is present with our parents when they go to the doctor. Technology help was another big one as we realized that most people wanted to connect to their loved ones far away. Similarly, simple things like cooking together or housekeeping also came into the services we started offering. All these are things that you would do with a family member or a trusted companion assembled together bottom up.
We do a very good background check, train people on how to engage empathetically with older adults and take care of the whole process from booking the time to making the payment.
The matching problem is one many technology companies try to solve, be it college admissions, jobs or dating. In the case of Tuktu, how do you ensure you match the right people to provide such services? What are some lessons here?
We realized that the quality of the engagement or companionship was very linked to the match. You can appreciate how diverse we are and hence for older adults, finding someone who speaks the same language or has similar cultural traits or maybe went to the same college is a very big deal.
So at Tuktu, we have prioritized our technology and processes to ensure that the match is as close as possible. We identified 24 parameters that make a perfect match – ranging from demographic things like gender, language, culture, educational background etc. to character traits like preference for punctuality, reticence etc. that we can use.
Right now, we use a smaller subset but we are already seeing results. For example, we had an older gentleman here who worked in the army and spoke a particular language. We gave him a companion for his walks using our matchmaking who had a similar background and spoke the same language and we noticed a strong customer satisfaction. I guess this is quite obvious but for us it was a hypothesis that we proved technically and now have started to have data to support our claim. But its not enough.
Beyond (just) matching
“Since humans are so diverse – we really need a lot of data to make this intelligent or get an AI based model to do it adequately. Also, we realize that while the match can be made by a system, we still need people to get trained on empathy and care so that they can provide the best support. So with safety and familiarity – we need lots of empathy too. All three are necessary.”
Rustam Sengupta, Tuktu Care
Would it be okay to say Tuktu is modeled like Shopify, for Companionship? For example, if I had a small outfit running services for older adults in my locality, could I use your platform to build out a smart way to fulfill those services? What would I need to ensure for that?
Absolutely! That is our goal. To overcome a big challenge like this – we need to think ‘ecosystem’ and not just one’s own company. Our platform is for anyone who wants to improve the care ecosystem of older adults. Wherever you may be, individual or company – you can use the Tuktu platform to bring in those you care for and also your network of companions. We will manage the scheduling, background checks, matchmaking and all the other support services – so that you can concentrate on what is most important – customer service and care.
We want to partner with anyone and just like Shopify, we can have you up and running within no time. For example, in Vancouver, we work with the Our Lady of Perpetual Help Church who use the Tuktu platform to connect their parishioners to the community.
The seniorcare industry, if I were to call it, has been in existence for a long time with non-profits, religious institutions, social enterprises and public funded programs. How would you say your team at Tuktu is different from your previous ventures and associations? What part of the business challeges you personally?
The timing for Tuktu and other agetech players is just right. Technology has come to a point when we are really making a difference now. And the problem is also huge – by 2030, nearly a billion people will be over 65 and we don’t have the infrastructure to manage that. Also, the healthcare industry has done miracles so people are living longer – nearly 25-30 years post retirement. So its time.
Tuktu is very different for me since its solving my own problem and everyone associated with us – our customers, investors, advisors, friends – all face the same problem. The value proposition is clear.
The challenge that keeps me up at night is ‘quality’. How do we ensure that as we scale and reach more communities, the quality of the service stays high and continues to be safe. I think this will be where you will see us innovating and working hard over the next few years – building stronger training and smarter safety nets. We want older adults to not just make it through their silver journey but we want them to thrive and enjoy.
You have built a product ground-up, established product-market fit, raised capital to support the early journey, got a great bunch of folks together on the team, and most importantly, serve happy customers. What’s in store for the year ahead?
This is just the tip of the iceberg and we have so much more to do. We need to get to more people and expand our impact. And like every startup with an ambition, we need more capital.
This is an unconventional field so it may not be for the everyday investor and better suited to those who see the big picture and play the long game. We have a lot more building to do on the product side, for example, creating capabilities to support inter-city or inter-country networks. This will allow for people siting in one country to support their older loved ones across the globe without having to worry for safety, quality and convenience.
The current team is exceptional and we need more people…smart and committed people who want to change how we build for care. Its not going to be easy but every customer I serve, inspires me. Those aging right now have done so much for us so its imperative that we create institutions like Tuktu for them.
Quick question. When can we see Tuktu in India?
Next year. We will be launching our partner onboarding programs and an individual or entity, regardless of the size and type, can find in us a safe, simple and efficient platform to build on their care services. Having the building blocks in place to get there is definitely on top of my list.
You mentioned about community funding for your business, and that was quite interesting. What is it? Why is it important to you?
We are creating communities that care so its important that we include the community as co-owners and in strategic decision making as we evolve the company. This is important for me as I want to give back to the community and have decided to earmark 10% of our equity ownership to the crowdfunding campaign underway and allocate one board seat for that.
You see crowdfunding is for guys like us – our customers, our employees, friends, well wishers and those who are passionate to make the lives of our older adults better. We want everyone to have a part in this movement and as we grow, we want them to feel that they made a difference too, irrespective of how much they can invest.
I am lucky that I get to do this full time but for those who can’t – they can join our crowdfunding and become co-owners and guide me.
Tuktu Crowdfunding Campaign
The crowdfunding site link will be up in mid-September. However, if you would like more details, you can reach out to Rustam on his email – email@example.com.
Visit www.tuktu.ca to know more and check out the video below.
Aamod Wagh is Pune-based founder of Tigertech Labs and Rhemos Health, with a career spanning 25 years in IT Consulting across Australasia, Europe, and USA. Tigertech Labs was setup in 2016 upon his return to India to develop remote health and safety monitoring devices for senior and dementia care. TigerTech also transitioned to Telehealth in 2019 with RHEMOS – an acronym for Remote Health Monitoring System – to deliver hospital grade care at home using affordable & easy to use medical devices.
Today, Aamod and his team serve over two lakh customers every month and their products are available through their website and also on e-commerce portals like Seniority. RHEMOS also works directly with 100+ hospitals, seniorcare companies, rural care foundations & telemedicine companies to further the mission of providing digital and remote health solutions to all, across the country.
Aamod, it was pleasure speaking with you earlier. Tell us a little bit about how you ended up creating Tigertech Labs. What triggered your decision?
I was based in the US for an extended period of time and would travel to India once a month for business. During every trip, I couldn’t help notice that a significant number of seniors in India lived alone, as their children were in another city or country and had little or no family support locally. It was also apparent that – while western countries had significant number of products and solutions available for assisted living & senior care, the same was missing in India. That was the spark that ignited the fire and the genesis of TigerTech.
You started with smart living solutions. How has this journey evolved and what are your core solutions today?
For us “smart living” encompasses personal safety, security & health and all our technology solutions resonate around this thought.
We launched India’s first senior care wearable devices called TigerTRACK & TigerFIT Pro. These were loaded with features & designed to provide 24X7 location tracking, automatic alerts on fall detection, SoS button, built-in cell phone, anti-wander sensors, monitors for heart rate & blood pressure and also instantly send alerts if an emergency is detected or if the user exits their home. The devices are designed to work independently and without any user interaction and can be monitored and controlled remotely by family and/or caregivers through an App.
Our products were welcomed with open arms by customers & we work with some of India’s largest senior care & home care companies, who use our devices to provide emergency support and care services to seniors across the country.
While our wearable products continue to do well, we also found that 70% of our seniors suffer from NCD’s like diabetes & hypertension and need to receive quality care at home. This got us exploring the possibility of providing high quality healthcare in the comfort of people’s homes and adding the benefit of remote health monitoring by doctors. This was the genesis of our RHEMOS Health product.
Today RHEMOS Health enables patients to receive “hospital grade” care at any location – in their homes and also in remote villages – without the presence of doctors or medical professionals. RHEMOS devices can measure 8 to 16 critical vitals within minutes using touch sensors. The smart technology also transmits the results instantly to an App & Cloud for remote access by doctors so that they can provide an accurate diagnosis & prescribe appropriate medications. RHEMOS also analyses all the vitals and generates a “health score” for each user to ensure that any preventive health indicators are provided well in time.
RHEMOS’s mission is to provide easy and affordable access to high quality healthcare at any location, for all and we are proud to have met and exceeded our mission.
You develop medical-grade devices for remote and digital health, including wearables. The overall awareness among consumers is still not as high and there is a lot of false advertising too. If I were purchasing a wearable device for an older family member, what should I look out for?
For wearable devices – especially for seniors – the most critical points to consider are (a) the size/weight & “wearability” of the device, (b) the ability of the device to do its job as an independent and stand-alone device. i.e. it should have zero dependency on the user carrying a cell phone, etc. and (c) ease of use including having little or no interaction with the device or technology – except pushing a button in case of emergency. All these factors determine whether seniors will use the device regularly.
For medical devices, the most critical point to consider when getting any medical device is that it should have at least 1 international certification – viz. CE-MED and/or FDA. These are mandatory for selling the devices in any EU country and in N. America. The rigor, dependability & accuracy of their certification processes ensures that the CE-MED certification is also acceptable across almost all other countries.
Other important points to consider for medical devices include (a) the ease of use, (b) whether the device is internet connected and automatically shares test results with your Doctor or your family, and (c) whether it can handle multi-functions to measure 7 to 8 vitals rather than having to buy 7 to 8 separate devices to do the same tests and finally (d) does the device provide any value added information after testing your vitals, that assists you in keeping a track of your daily health and provides you with any early warning information for preventive care.
What is Rhemos? How does it work? What parameters does it help measure? How can this information be used?
RHEMOS is an acronym for Remote Health Monitoring System. Its mission is “Healthcare. Anywhere” and its vision is to enable easy access to affordable & personalized care to all Indians at any location.
RHEMOS Health Ecosystem combines portable hand-held medical devices with an App/Cloud & health analytics to provide a comprehensive telehealth solution. The devices can be taken to any location to measure 8 to 16 vitals with hospital grade accuracy & transmits them instantly to All/Cloud for remote access by Doctors to conduct an accurate diagnosis.
The health monitor is a single pocket-size device that measures 8 vitals in 2.5 seconds. These include BP, Heart rate, ECG, Heart rate variability, Respiratory rate, Blood oxygen, Body temperature & blood glucose. Rhemos also provides small blood analyzers to conduct blood tests for Haemoglobin, HbA1c & Lipids at home in minutes and our digital stethoscope measures heart & lung sounds. All readings are instantly transmitted to remote doctors with alerts in case readings are abnormal. This allows people with chronic conditions like Diabetes, Hypertension or Cardiovascular disease to test & monitor themselves at home – while being monitored remotely by family & by their physicians.
I understand you work with the rural health system. Can you tell us how your solutions impact rural health?
RHEMOS identified some of the biggest issues faced by care providers in delivering healthcare to rural India. Some included availability of qualified doctors, nurses, medical infrastructure, power, wifi, vitals testing capabilities, etc. Also many rural hospitals face high traffic of 500-1000 patients a day which is difficult to manage. Finally, the biggest health issues in rural India are inability to detect comorbidities & NCD’s like diabetes & hypertension and women’s & children health issues like anaemia, pre/post-natal care. The RHEMOS solution was then designed to directly address each one of these issues.
RHEMOS does not need power or wifi and can be used by ASHA workers to check vitals for each patient – including blood tests & chest sounds. This ensures that hospital grade care can now be delivered to the deepest parts of the country even without presence of local doctors & nurses as remote doctors can now take care of patients & prescribe medications. A single RHEMOS device can handle 150-170 patients/day to handle high traffic. And, the multiplicity of tests conducted by RHEMOS also ensures easy identification of most comorbidities to enable personalized care & also conducts detection camps for diabetes, hypertension, anaemia, etc.
You mentioned that you partner with seniorcare organizations. How do these partnerships impact the quality of life of the end customer?
Many senior care organizations leverage our technology to provide their customers with additional services based on our devices. E.g. they run emergency response services that are connected to our devices and monitor all location alerts, fall alerts, health condition alerts and provide timely response services. The end customers and their families can now live with complete peace of mind that their lives are secure and that – if required – help is literally a click away.
It has been 8 years in this journey for you. How has the landscape changed? What are the trends that you observe today?
When we launched our products 6 years ago in 2016, the senior care & eldercare sector was just about starting to gather steam, and senior care products were limited to grab bars & wheelchairs. We were the pioneers in leveraging wearable technology to bring safety & health to our seniors in India. Also when it came to healthcare, telemedicine was a just glorified video call & most doctors & patients insisted on physical examinations as the only way of good treatment.
Today – especially post pandemic – the home care, senior care & telehealth sector has mushroomed and is now being accepted as mainstream by doctors & patients both. Also the awareness about using technology & the availability of products like ours has increased multi-fold.
People have started to recognize that products like RHEMOS plug the gaps that exist in telemedicine today and can ensure that telemedicine can actually provide comprehensive care remotely.
The newsletter brings you news, stories and trends from the silver economy in India, in a short, easy-to-read format. Businesses, brands, investors, startups, researchers and analysts following this space are likely to find it interesting.
Nidhi Chawla is co-founder of Silver Talkies, India’s leading active ageing company focused on 55+ adults. Individuals can opt in for subscriptions to access curated content, a community of like-minded individuals, events, and a host of other community activities for healthy and happy ageing. Silver Talkies has engaged with over 20000 older adults, both digitally and in physical formats across India. The Silver Talkies magazine, with a subscriber base of 8000 adults, is one of India’s leading active ageing publications focused on older adults. Based in Bangalore, Nidhi previously worked with McKinsey & Company and is a pioneer in the active ageing space.
An active proponent of healthy and happy ageing, Nidhi is co-authoring a book for Penguin Random House on how the landscape of ageing is shifting in India. Nidhi has been the recipient of leadership awards for her work in the eldercare space and is currently a member of the CII Seniorcare committee. In this interview, I chat with Nidhi to understand active ageing, why it is more relevant than before, and how Silver Talkies is shaping those conversations.
Nidhi, we first met in early 2020 and I recall you speaking passionately about the eldercare ecosystem and particularly about active and happy ageing. What do you mean by active ageing? Why is it important, particularly for older adults and seniors?
As per International Council of Active Ageing, active ageing rests on 7 pillars – physical, intellectual, emotional, social, vocational, spiritual and environmental well-being and if you were to ponder over these aspects deeply with regards to the elders in your own life you would find that each and every pillar is vital for an older adult’s well-being. We discovered this through our own experience with our ageing parents at home. Their intrinsic well-being needs to be complemented with extrinsic factors, including how our system, society and infrastructure supports them with their ageing needs.
With age comes natural physical changes which are often accompanied by decline in mental, social and emotional well-being due to various reasons like empty nests, nuclear families, shrinking social circles due to death and disabilities, lack of engagement opportunities etc. Early retirement age, increased longevity, progress of technology leaving seniors behind have only added to this mix, thereby making it increasingly important that we address these issues exclusively for our seniors.
We must give them opportunities for social and intellectual engagement, looking beyond their physical health and catering to their holistic well-being. We must empower them with the necessary skills, information and opportunities so they continue to stay included in our society and age gracefully, happily and with dignity. It’s time to redefine ageing and make it a lively experience despite the inevitable downgrade in health and abilities.
You have seen the evolution of the eldercare space in India over the past decade. What has changed over the past few years, and what hasn’t?
Back when we started out there were hardly any players in the eldercare space, many of them being in the unorganized sector. Over time we saw many companies with interesting concepts come and go, either because the market was not ready for the idea or there was no funding available to scale up.
The focus continued to be on physical health and senior living. Concepts like companionship, second careers and engagement continued to be unheard of. Over the years the landscape has been evolving and hopefully shifting for the better. Even the healthcare and senior living sector is seeing more depth in terms of the kinds of offering that are coming up in the market. Home healthcare, transition and palliative care are emerging; assisted living and ageing in place concepts are being introduced and are better understood. However, there still remains a large unexplored territory that can lend heavily into an older adult’s overall well-being. Focus on physical health continues and active ageing centers are far and few.
Pandemic has put a spotlight on the needs of seniors like never before, prompting organizations, government as well as investors to take a serious look at the sector as a potential opportunity. However, success will still be hard to come by unless a mindset shift happens where there is an increased awareness about the positive impact that all these services can have on the lives of older adults. With the next generation used to a different lifestyle, have better financial freedom and a stronger desire to stay well and independent, we are likely to see adoption of these services much more quickly.
Silver Talkies has gone through different phases of evolution. What are the core activities you undertake, and who is your target audience?
Silver Talkies has three main verticals.
Our digital magazine covers topics across four main categories – health & wellness, money matters, living and people & stories. Our magazine features original and well researched content generated either in-house or through our contributing experts and members, across topics that would be of relevance to seniors and their caregivers. We also shine light on awe-inspiring seniors and focus on positive ageing stories.
Our community invites older adults to join Silver Talkies Club – a safe space for seniors to discover themselves as well as find new friendships across geographies. Our club members enjoy exclusive events, learning opportunities, meet-ups, buddy support, expert help, partner offers and vocational opportunities. They also contribute to our magazine and share their skills and knowledge with other members.
Our workshops and weekly classes are open to both club members and non-members and cater to different interests and needs. Our awareness sessions are also open to all.
Our target audience is anyone who is 55+ residing anywhere on the globe. Our current offerings are available only in English language. In the near future we plan to introduce programs in at least a couple of Indian languages as well.
With longer lifespans, older adults prefer assisted living arrangements or ageing-at-home services to support activities of daily living (ADLs), nursing and attendant care needs, mostly in urban areas. Do you work with such partners to support healthy ageing?
Yes indeed, these are practical needs of any older adult. We are working at meeting all needs of seniors under one roof by having strategic tie-ups with carefully selected and leading players across different segments of eldercare. We already have tie-ups in the healthcare, tech assistive devices and lifestyle segments and in the due course will be buffering up this strategic pool of partners. We also facilitate connecting our members to right experts and service providers in the senior living sector as and when requested.
Can you expand on the general customer profile of Silver Talkies members? How do they benefit from your membership services? Any anecdotes would be much appreciated.
Silver Talkies members come from varied backgrounds and consist of homemakers to lawmakers; introverts and extroverts. Diverse personalities have found home at Silver Talkies Club. They are well-educated and cosmopolitan in their attitude. They may be 55+ but they are young at heart with great zeal towards life. They are adventurers and lifelong learners, willing to experiment and explore new horizons.
With Silver Talkies’ engagement opportunities our members have been able to fulfil their dormant desires and also acquire new skills. They have found multi-city friendships and managed to banish the loneliness blues. They have been able to get and give advice, share their own skills while also learning from others in the group. They have learned to dance, sing, act and walk the ramp! They have discovered the writer in them and have become digitally literate. With the common interest groups like gardening, quiz, literary, wellness they have found shared interests with other members and actively interact with them on these topics.
Anecdotes are plenty, sharing a couple of them.
Sunita Thakker a member from Mumbai who was experiencing the empty nest syndrome after her only daughter’s marriage is now an active and exuberant member of Silver Talkies community. She has not only found multi-city friends who are ever ready to host her when she is in their town, she has also found a new passion for painting and music. Thakker has also been taking care of her physical health through online fitness classes. She is a regular at monthly quiz and storytelling sessions and makes it a point to attend as many activities as possible, as the virtual format allows her to fit them into her schedule easily. She is just one shining example of a senior who has found a new zeal of life after joining a community like ours.
Col. Tavamani who served the nation all his active years, now lives alone while his married daughter lives some distance away. Col. Tavamani was dependent on his wife to take care of him and the household. He didn’t even know how to make a cup of tea. So, when she passed away, he found himself spiraling into depression. In his words becoming part of Silver Talkies rescued him and he is now an active learner and member. Col. Tavamani has benefitted from the tech classes and now proudly considers himself tech literate.
How big is your team and what is next in the journey for Silver Talkies?
We are currently a ten-member team including the core operations and the tech team. The year 2020 was a silver lining for us amidst the dark clouds. The pandemic pushed us to pivot our model from being a Bangalore only community to becoming a pan-India virtual community. Currently we have members from 12 different cities. With the help of our technology partner, we are working at offering our services through both web and mobile channels, making our services easily accessible through preferred channels. We would continue to simplify accessibility while leveraging technology to scale up and positively impact lives of seniors across the globe.
Our vision is to be a global platform with city chapters, offering our engagement modules virtually while holding city meet-ups quarterly. Currently, we are working at enhancing our value proposition and introducing the missing building blocks of the active ageing framework. We envision an empowered society of older adults who have learnt to take care of themselves and are able to age with grace and dignity.
Silver Talkies invites non-members to experience the benefit of the club membership via a 30-day preview offer where they can attend member exclusive events and learning modules and participate in all member activities. All details are available at www.silvertalkies.com
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Shreya Bajaj Shah is co-founder at Easy Hai, a social learning company focused on the 50 plus adult population. Shreya and her sister Surabhi started Easy Hai in mid-2020 and what started as simple smartphone familiarization sessions on Zoom is today a vibrant community that has touched ~10000 adults in 1.5 years.
A proud Bangalorean, Shreya is a chartered accountant with an MBA from ISB, actively involved in her family business and part of other ventures in hospitality and sports. In this insightful conversation, Shreya breaks down her fun entrepreneurial journey at Easy Hai.
“Easy Hai today is my full-time business endevour. All my time is spent on building Easy Hai because I genuinely believe in its cause. I feel like it’s such a meaningful business because it really helps me sleep better at night knowing that I actually made a tiny bit of difference in someone’s life. My sister is my co-founder and she handles the complete backend, the operational part of it. I’m the main teacher at Easy Hai and we do have two other teachers as well who take some of our day-to-day classes like Google pay or Google photos, Netflix, Facebook, WhatsApp, so on and so forth.”
Shreya, I had the opportunity to be a silent participant in one of your online sessions where your alumni were presenting social media analytics of their respective Instagram accounts. Let us start here. What was the journey for that cohort?
Good morning, Mahesh. I’m so glad that you were part of our analytics class. Now the journey of this is backdated quite a bit. We usually have a five-week masterclass called Instagram transformation course. This is 10 sessions, which is two sessions a week, and the session is very detailed including study of Instagram for business accounts. If you’re trying to build a personal brand or trying to look at Instagram for monetization reasons, of course it’s recommended. Now, this course includes everything from understanding your account, making your perfect bio, having an aesthetic feed, understanding the difference between stories, post, reels, Instagram guide, Instagram life, so on and so forth.
The Instagram transformation course has a mix of strategy and of course, how to use the tool. It is very step by step and a clear-cut instructions-based course, and it comes in with a bit of a strategy because the audience for this course are people who are already in service. They include doctors, physiotherapists, reiki healers, yoga therapists, and those in business.
Some of them have either started their own business or are part of a family business. Or they want to start a business in the near future, or they’re probably using Instagram very seriously for their personal branding purposes or for getting speaking engagements in the future. Because people have a definite goal, they do this very detailed course. We work on a WhatsApp group a week, come up with different challenges that people kind of take part in as a community.
Once the five weeks course is over, they all get transferred to an alumni group. And in this alumni group, we meet once a month and these sessions are conducted by me for free. We don’t charge the learners and, in these sessions, we just discuss about the new features of Instagram. Alternately, we take any topic, like on the day you attended, we took the topic of understanding Instagram analytics. And from there on, we make smaller groups, you know, groups of three and asked the team to pick one account among the team members and do a deep dive into their account and present their analysis. This way, they come to know what kind of content works, what are the mistakes they’ve been making as well as what should the strategy in the subsequent months. So that’s the journey of that cohort-based learning.
One of the most interesting parts of being part of that session was watching you switch between being a friend, expert and teacher. Many of your students are successful in their own right but come with a shared passion to learn. Can you give us a little insight into the profile of your students? How diverse or mixed is it?
That’s a very interesting observation. I probably do that subconsciously, but I guess you’re right as I think about it. And the reason for that is, I always want to have fun with my learners because I think learning is a lot more enjoyable and also it ends up there’s a, there’s a much deeper penetration if you’re able to enjoy those classes. And I guess just being a friend and being funny helps in all of that, but at the same time, learning has to come with a certain amount of discipline, and hence I do become a strict teacher as well. Yes, most of my learners are successful in their own right. They come with a very, very rich experience, but what amazes me is how humble they are. And they have absolutely no airs about not knowing technology. It overwhelms them, but you know, it’s not like, why do I need to learn this? There is a very deep-rooted curiosity and an interest in learning what’s new and being part of the changing world. And I guess for me, that is, as someone who is growing up, to have that for inspiration is fantastic.
That age is absolutely not a barrier to learning and really learning can happen at any age. And we’ve heard this quote so many times, but to see that in practice is really inspiring at another level. The people that come to my classes are typically quite varied. We have homemakers, people who are retired and want to make better use of their time, then there are people who have so many experiences and want to kind of make a digital archive of the same in the form of a podcast or in the form of a really solid social media profile or you know, like a YouTube channel or just probably write a book and they want to know how technology can ease that process for them.
Then of course, we have people from the business background. Most of them are self-made entrepreneurs or are running their startups now, especially as COVID give birth to home-based entrepreneurs. So that again is another mix of people that are coming to me. And then, people who have been in service. For example, there are lots of lawyers, doctors, you know, service-based backgrounds who want to now dive into the digital space because if the next generation is their target audience, then they feel like having a digital presence is important because that’s how we’re looking for resources in today’s time, right! Like we want to check a Google review or check their Instagram page before we make an appointment with the doctor or look them up somewhere to see how much of an expert they are in their field. And then there are people who are just there for the love of technology. They’re probably taking a sabbatical or they just want to know what Instagram is about, what the changing technology is and just for the love of learning. I have a lot of students even like that in they actually just say it, I just want to know what’s new and what’s happening, technology fascinates me and I want to be part of.
My learners are quite diverse and mixed in terms of demographics. 80% of my students are from India and others are from Dubai, Hong Kong, Singapore, London, New York and Bangkok. And we planning to dive into the African market as well.
The first time I came across your Insta profile, I was intrigued with some of the topics you touch upon. Can you tell us what Easy Hai does today? Why the focus on technology?
Easy Hai’s mission is very, very simple. We’re here to teach technology to adults and seniors. Why the focus in technology because, in the first lockdown, when literally our country went into a standstill, the entire dependence was on technology, whether it is to keep ourselves safe using Arogya Setu, or to even learn about the pandemic, all the resources online, whether to believe the news that’s circulated on WhatsApp or to flag it as fake. How to register for a vaccination, using Cowin or how to even, you know, order your groceries and stay at home, getting an e-pass, whether it’s in the city travel or interstate, pretty much everything was digitally done. And there’s a huge startup society that wasn’t equipped to handle that change. And so really, I started teaching a lot of mainly my immediate family on how to use Google pay or how to buy groceries or how to make your electricity bill online without having to really go to the electricity office and slowly it let the word spread and more and more people started reaching out to us, which is when I realized that this problem exists beyond my family.
I then went on to test whether it was only north Indians because maybe English could be a problem. And perhaps south Indians would find it easier. But it wasn’t any of that. Actually, this is quite a global problem because now that I have students from different countries coming to me. I realized that it’s not about whether we speak good English or not, because technology is just another language. Just like you, you can be very fluent in English and you wouldn’t know anything in Tamil or Telugu or Malayalam for that matter. The computer language is treated the same way. You either know it or you have to learn it and that could mean understanding the basics of operating your phone, understand the basics of operating your laptop, understanding what computer terminology means and how to think, how the algorithm is built and that’s really what we teach in our class. So yes, we are super focused and teach only, and only teach technology.
We have over 40 topics, everything from a simple how to use Netflix or how to use YouTube all the way to Google, Instagram for business, how to use Canva for your designing needs and you know, all your aesthetic requirements. So yeah, the, the topics are varied. Basically, any app or software on your phone, iPad or laptop becomes a class for us, as simple as that.
In India, most academic degrees and programs have an age cut-off and hence the concept of continuous learning is more a personal endeavor. Thanks to technology, we can now access content/courses without those restrictions. You have been able to use digital well, bridge the learning gap and build a trusted community. What do you think is working well for you?
I think what’s worked for me is if I have discovered that I am a teacher, which is completely accidental and I guess the complete credit of that goes to my learners because they constantly give me feedback. And this audience, and particularly this age group, is so amazing to work with because they’re so grateful and they give you honest feedback and there is absolutely no superficiality in the whole thing. If they love it, they’re going to tell you that they love it and if they don’t understand it, then they’re also going to be brutally honest and tell you that they do not understand it. In the initial days, I think what worked really for us was honest feedback.
We also accepted that feedback really quickly. I mean, when people told us that this class was very bad, we quickly figured out what wasn’t working in that case, whether the material was too long? Should we have given the recording of the class? Should we have broken this down? Was it too much that we dumped in one session? Should we have broken down that further? Was it the delivery of the class with the teacher? Not exciting enough? We really deep dived when the feedback was bad. And then when it was good, we used to also ask them the part of our class they liked. I guess the more common things that I hear is that your explanations are good because you break down technology concepts into simple mundane day-to-day language.
I also drop examples from real world so they’re able to understand the concepts a little better. That style of very relatable, conversational style of teaching technology, something that appeals to them. And other thing that they see is the energy that I bring to class because online classes otherwise are very boring, and of course our information, right.
And most people, they don’t just sign up for one class. They sign up for many classes because they get so hooked to technology. And because they’ve understood one thing, they want to now learn more things. And in the process, they keep coming to our classes. Say you have attended class one and now you’re in class two, if you have any doubts from class one, we usually come in 15 minutes early and stay back 15 minutes after every session so they can always ask us their doubts.
It’s very rounded. We don’t just say, press this button, press that button go left, go. Right. But we kind of try and get into the brain of the developer. Like, why did he do this? What’s the business model of that company? Functionalities remain same across all apps. For example, the minute you see a magnifying glass, it would probably mean use that to search anywhere on the app. I guess little, little information tips, tricks like this works. And then I guess another point that really works for us is because we are here even after the class is over. It’s not just that you come, you pay and you go to class, but if you have a doubt and we help you. We have a WhatsApp support. If you want additional help, you can take a one-on-one class. They’re always connected with us and it’s not like we’re really going away anywhere.
I guess, in very simple terms, it is that we really want the best for our students, and we put them in the center of our business. If they’ve understood, we’ve done our job. If they’ve not understood that we haven’t done well, and then we go back and rework on it, which is why with masterclasses like Instagram or Canva, they have continuous support in the form of free classes, because we’re really here to give them value to make them stay motivated and in turn, they are our biggest brand ambassadors and marketing heads.
All your programs are digital and you did mention about getting invitations to undertake such workshops in person. Is that part of the trajectory or is the goal to stay the fully digital path?
Actually, all our programs have been digital. And I think that I will continue to keep them digital because it’s not that I have people only from one city. We have people from across the globe that are part of our programs. And I don’t see that getting substituted. However, thoughts do cross my mind, for example, if I have to do a photography workshop, I think that would work better offline than online. And so sometime in the future, I would probably try and offline version of the same, but I think online is extremely comfortable because it’s so cost effective and people can really log in from anywhere, even if on the road, or in their office or at home, or even on vacation. People have attended our classes on vacation because you just have to take that one hour off and continue to learn while doing something else so I think we’re going to stay predominantly digital.
Where do you go from here with Easy Hai?
With Easy Hai, we will continue with our daily classes so you can decide to come and be part of any of our live classes. We also have a very strong masterclass set up and I’m probably going to add in more courses to that. Right now, we have Instagram and Canva but I’d also like to add in Google sheets for business owners as a very specific masterclass. Then there are a few more courses that are in the pipeline and we will be coming up with those as well. At the same time, I’m also going to experiment with on-demand recordings of courses because we’ve also gotten the feedback that our timings don’t work for everybody, especially because we have students from different countries. We are going to try that however; it won’t just be like purchase the course and watch it at your own comfort zone. It’s going to have a mix of a live Q&A every week. If you’ve purchased that course and you watched it at your own time or at your own pace, but you can always come and attend our Q&A sessions. That’s what I’m building on next and hopefully in the next one month, we should see a couple of those courses go live at Easy Hai.
The future of Easy Hai is to first kind of try and cover all strata of the society in terms of our course delivery so it’s going to be masterclasses, daily classes and on-demand videos. And then from there on, I want to start moving towards tier two and tier three cities because this is something that they need just as much as an urban population, probably more right, because technology is such a boon to everyone. So that’s going to be my second phase of marketing and growth.
You can connect with Shreya on LinkedIn, follow Teach Easy Hai on Instagram or just connect on WhatsApp to learn more.
The Silver Angels newsletter brings you news, stories and trends from the silver economy in India, in a short, easy-to-read format. Businesses, brands, investors, startups, researchers and analysts following this space are likely to find it interesting.
Vandana Mahajan is a palliative care counsellor with a post graduate diploma in integrative counselling. She is trained in palliative and bereavement counselling. She is associated with a Mumbai-based cancer non-governmental organization named Cope with cancer-Madat Trust. She works as a volunteer counsellor at the Tata Memorial Hospital , Mumbai and also provides cancer counselling to patients and caregivers across India and abroad via online platforms.
Vandana is a cancer survivor and a cancer coach who has been conducting motivational talks at various forums, and provides support to breast cancer patients through interactive sessions at TMH. She is a strong advocate for women empowerment and conducts women safety training sessions in corporate houses.
I understood from our call that palliative care is more than just pain management and deals with emotional distress. Can you give a little insight into how it works?
“We can’t change the outcome, but we can definitely affect the journey” said Dame Cicely Saunders who is the founder of the hospice movement. When a person is diagnosed with a terminal illness or is dealing with a chronic illness, in addition to the physical manifestation of the disease there is lot of emotional distress that comes as a package deal. This is both for the patient and the caregivers. Whilst the physical symptoms are treated, unfortunately the emotional burden is overlooked.
While the clinician takes care of the physical pain and the physical symptoms, it is a counsellor/ psychologist who can address the emotional burden. Therefore, palliative care is not only pain management, it also includes emotional management, which can be provided by a palliative care counsellor. The emotional drain and the emotional strain also need to be addressed.
Let’s talk about Mrs Shilpa (imaginary patient) who’s has just been diagnosed with advanced cancer with a poor prognosis. In addition to the to the treatment that she goes through, (which is very painful and has a lot of side effects) she also starts carrying an emotional burden. This can be in the form of fear, anxiety, depression, panic, feeling lost and sometimes even wanting to end one’s own life. This can break her down mentally. At this point it is very important that counselling is integrated into the treatment plan. Just because a person is dying or is living with a chronic illness doesn’t mean we give up on that person. Everyone who has a life limiting condition deserves to be treated with love, empathy and compassion. Living with illnesses is very tough. If we can handhold the person diagnosed with an illness and walk with them, they feel wanted, they feel recognised and they feel that they’ve not been abandoned. I have seen many patients whose disease is well managed but emotionally they are a wreck. The same is applicable to the caregivers. Care giving is a huge responsibility which can take an emotional toll on the caregivers.
If I am the primary caregiver for a family member going through a chronic illness like cancer, what should I do outside ensuring appropriate clinical care?
I’ve been working with cancer patients for over 8 years now, and I firmly believe that cancer is not a disease of just the patient alone. Cancer is a disease that affects the entire family. Caring for a person diagnosed with cancer can be demanding both emotionally and physically.
A caregiver is so rightly referred to as a silent patient. You don’t have to suffer – if you are unable to cope up, seek help. Do not feel guilty about seeking support from friends, religious or spiritual advisors, counsellors, and health care professionals.
While the patient’s physical symptoms are being attended to by the clinician, there are certain things that a caregiver can provide as per the needs of the person with cancer. These can be any of the following or all of the following:
Emotional support – while the treatment takes care of the physical symptoms resulting from the treatment and the disease, the emotional distress the patient goes through may not be visible. As a primary caregiver, you can keep an eye out for any behavioural changes and then raise it with the treating team.
Help with financial and insurance issues
Help with medical care
Bridge the gap between the patient and the health care team by being the communicator.
Try to ensure, if possible, that the person with cancer has an active role in decision-making and the discussion that takes place.
Caregiving is challenging and when the person with cancer is struggling with the disease and its side effects, it can be frustrating for the caregiver. At this point, it’s important to recognise that your loved one is dealing with a lot – physically and emotionally!
Recognize your own strengths and weaknesses as a caregiver. This allows you to set boundaries and know when to ask for help so that you do not feel burned out. Remember as a caregiver, you can care for your loved one only if you are emotionally and physically capable in doing so. Taking care of yourself is important.
Be aware of the disease, its treatment, and the prognosis. It can help not only you but also your loved one who’s been diagnosed with cancer deal with the disease and its outcomes much better.
You mentioned palliative care is a multi-team approach. Can you tell us who the key stakeholders are in such care management?
To understand palliative care, it is very important to understand the concept of ‘Total Pain’. Total pain means approaching pain from all aspects of life. This includes physical, psychological, social, and spiritual aspects. Palliative care aims to improve quality of life of the patients and their family who are facing life-threatening illnesses by providing holistic healing or support to them, irrespective of the intent of the treatment.
This can be done by the treating clinician or the physician who provides relief from physical symptoms, a counsellor / psychologist who provides emotional support, a priest or a chaplain who provides for them spiritually and social workers who can help in various ways. All of them together form the palliative care team which should ideally be integrated into the treatment plan at the time of initial diagnosis!
General awareness of palliative care is low in India. Is this changing? How big is the gap when it comes to awareness and access to care professionals?
Palliative care continues to be the most misunderstood arm of healthcare. I will talk from the perspective of someone who works with cancer patients. As of today, I would say majority of cancer hospitals do not have a palliative care team working with cancer patients. Palliative care still continues to be a care which is associated with the dying cancer patients essentially focusing on only pain relief and symptom relief towards end of life. The moment we talk of palliative support for the family, the first thing that the family understands is that the patient is going to die. Unfortunately, there are many doctors also who are not aware of the real meaning of palliative care.
There is a change happening. There are many renowned palliative care professionals working towards bringing about this much needed change in our health care system.
We still have miles to go before we are able to finally reach that place where palliative care is well understood and attainable to everyone who goes through a life limiting condition or a chronic illness. I have patients who live in remote areas of India where there is no access to palliative care teams. There are some with whom I stay connected till death but there are many who die in want of Palliative support.
Palliative care is largely regarded as something older people may need but you mentioned the rise in the number of younger people (or their families) that seek palliative care. What are the more common cases you see?
This is a very interesting question you’ve asked. Rightly said that palliative care is still associated with geriatric patients.
Older adults are often dealing with a variety of aches, pains, and discomforts in addition to serious health conditions like cancer, respiratory diseases, Alzheimer’s, osteoporosis, diabetes, influenza and Pneumonia and cardiac conditions. The medical treatments to cure or reverse these health conditions can affect older bodies more harshly and are more likely to cause significant side effects. In such cases, the efforts are directed towards improving their quality of life. Hence the need for palliative care for them.
I work with cancer patients and cancer is not an age-specific disease. A lot of the patients that I work with are young. Sadly, cancer doesn’t care about the age! The treatment is harsh and leaves the person affected, with many unpleasant side effects. While it’s the patient who is diagnosed with cancer, the families are also affected in various ways!
That’s why I talk of palliative care for younger people (and caregivers). Younger people go through far more complex emotional upheavals. While an 80-year-old adult knows that death is inevitable, for a young 30-year-old who is being denied a chance at life because the cancer is incurable, Palliative care becomes very important. They need a lot of hand holding. They need answers to their questions. There are some married young people who know they’re dying and they’re leaving behind young spouses and young kids, elderly parents so it becomes a very big emotional challenge to deal with these patients and their families.
Every person diagnosed with a terminal illness, irrespective of the age, deserves empathy, compassion and love, therefore palliative care is not only for older people. It should be accessible to very human being may- a toddler or a younger adolescent or 30-year-old or someone who is 80 years old. Here I would also like to mention that palliative care is also for people living with mental health problems, the LGBTQI community and for those who are affected by a humanitarian crisis (like in Ukraine).
Conversations around death. This is a very sensitive topic for most families and most would say that there is no way to prepare for death. However, in your line of work, you are in situations where you deal with terminal conditions quite often. How does palliative care help in such situations?
Those who are born, will die. This is the eternal truth of our existence! While every birth is celebrated, no one talks of death. It seems everyone wants to live for ever. Is that even possible? The problem is that we do not acknowledge death as an inevitability. No one talks about it.
While talking about death and dying might be uncomfortable or upsetting, research has shown that having these conversations within families and communities and with the health care providers can help people prepare emotionally for their own deaths and that of others’, and helps prepare for medical care they would prefer receiving at the end of their lives.
End-of-life care refers to health care for a person nearing the end of their life or in the advanced stage of a terminal illness. Generally speaking, people who are dying need care in four areas—physical comfort, mental and emotional needs, spiritual issues, and practical tasks. This is where the multi disciplinary palliative care team steps in.
Palliative care uses a team approach to support patients and their caregivers. This includes addressing practical needs and providing bereavement counselling. It offers a support system to help patients live as actively as possible until death and their caregivers post the death of their loved ones.
You can connect with Vandana on LinkedIn or follow her on Twitter to get some insights and practical tips.
Book Recommendation: Walk with the Weary by Dr M R Rajagopal, father of palliative care in India, from Flipkart or Amazon.
You may also want to check out this Silver Angels essay on palliative care, an attempt to lay out palliative care in the Indian context.
Silver Angels Newsletter
The Silver Angels newsletter brings you news, stories and trends from the silver economy in India, in a short, easy-to-read format. Businesses, brands, investors, startups, researchers and analysts following this space are likely to find it interesting.
Chirag Shah is 26 years old and co-founder of Rymo, which is on a mission to transform India’s rehabilitative care infrastructure. Chirag and his team are building robotic solutions focused on rehabilitative care and their first product “Mobi-L” is also India’s first robotic and VR based technology for upper and lower limb rehabilitation.
I had the opportunity to chat with Chirag on this very unique product journey that is filled with passion, learning and experimentation.
Chirag, pleasure to connect. Tell me a little bit about yourself and the journey so far. How big is your team?
Hello Mahesh, glad to connect with you and Silver Angels. I am an electronics and telecommunication engineer and during college was fascinated by the potential of robotic technology in improving human lives.
A visit to our neighbouring physiotherapy college gave me a chance to see the difficulty of patients with limited physical mobility and turned out to be a tipping point. That day, I decided to use my engineering skills, time and efforts to build something useful for physiotherapists and the patients undergoing physiotherapy and help physiotherapists in their effort to spread the joy of independence and good health.
A small research project which we started back in 2018 slowly matured into a product with the help of 250+ physiotherapists and occupational therapists whom we spoke to better understood the problems various stakeholders in the rehabilitation ecosystem face.
Going forward with Rymo and our team comprising 8 members we aim to make the best and most advanced rehabilitation tools accessible for every patient undergoing rehabilitation and increase their chances of living an independent life.
Why rehabilitation? How big is this market as you see from your vantage point? Who is your primary user – physiotherapist, family member or the patient?
In the initial phases of development, we got a chance to visit 100+ physical rehabilitation centres in 6 different cities. One of the learnings for us was that majority of the patients undergoing rehabilitation visit private physiotherapy clinics and a small minority go to larger centres in big hospitals. As big hospitals have more space and higher budgets some of them are able to provide technology aided rehabilitation which helps in faster recovery.
As per our research there are 10,000+ rehabilitation centres in India and less than 1% of these rehabilitation centres can accommodate imported robotic solutions due to the which there is a huge gap in the market which can be filled by a portable and affordable rehabilitation solution like Mobi-L.
Mobi-L’s primary beneficiary is the patient who is undergoing rehabilitation. Our solution makes it possible for the patient to measure their recovery objectively, have fun while exercising and also recover faster due to increased compliance and high intensity rehabilitation sessions which Mobi-L can facilitate.
R&D, prototyping and assembling – everything is being done in-house. What has been your learning on this front?
R&D, prototyping and assembling in-house has proved to be of great benefit for us. It has allowed us to keep listening to our user’s feedback and have the bandwidth to keep improving the product.
We have so far made 7+ major electromechanical iterations and 50+ software updates for our users. This has also helped us zero down on the most important features which will become a part of our final iteration before a nation-wide launch.
The long-term advantage for Rymo is that we now have a diverse engineering team with expertise in mechanics, electronics, robotics, software and game development and this allows us to continue to innovate, learn and grow.
Rymo’s software toolkit includes an Android-based app, games and much more. Can you expand why this is important? How does it improve the overall experience of the user?
Our software toolkit was built for Android with the objective of making operation of the device intuitive and minimize training required for the same. As most individuals are comfortable with using smartphones our software toolkit which runs on a 10.1inch Android Tablet can be used very easily.
The software ensures that the physiotherapist and patient get continuous visual and audio feedback while exercising. This not only makes the rehabilitation session goal based and measurable but also keeps the patient motivated to comply to the rehab session as prescribed.
The software toolkit also has multiple games and simulations of various activities of daily living which further make the rehab sessions fun filled and something that the patients can look forward to, and enjoy.
What are the different stages of rehabilitative care and recovery with Mobi-L? Could you please break that down?
Physical rehabilitation of upper and lower limbs generally starts with physiotherapist assisted exercises especially in the initial stages followed by active exercises where the patient is exercising independently.
These assistive and active exercises help the patient to regain full range of movement of the affected joint and recover one of the major aspects of mobility.
Once the desired range of motion is achieved the focus shifts to strength training which includes training with resistance, isometric exercises and doing exercises with varying resistance.
In order to meet the varied needs of the patients at different stages of recovery, Mobi-L can be setup with different protocols for training including assistive, active, resistive and isometric exercises. Thus, making it useful throughout the patient’s rehabilitation journey
As with most medical and health related fields, there is a shortage of physiotherapists in India. How does Mobi-L fit into this landscape? Say in a hospital or a rehab centre.
We all know technology is a huge enabler to improving work efficiency. For a software developer a high-end workstation will make his job faster and allow him to improve his productivity. Similarly, in a rehabilitation centre where a therapist is seeing multiple patients over the days or even at the same time our machine reduces not only the physiotherapist’s physical effort but also offloads significant efforts that go into engaging a patient to undergo his daily dose of rehabilitation. It helps improve their work efficiency and energy levels throughout the day.
With COVID, most of us have seen the difference that an objective measure makes in the diagnosis and treatment of a disease. A rapid antigen test for COVID 19 and the patients’ symptoms together provides an approximate idea of the diagnosis but a RT-PCR test helps the doctor to be more confident regarding the correctness of the diagnosis and also severity of the same. Similarly in rehabilitation a therapist’s experience and patients’ word regarding his physical condition is good to make an approximate guess regarding one’s condition and progress but a tool like Mobi-L validates the same and gives more confidence to the patient and the therapist.
Home-based care is on the rise in India, and particularly the demand for eldercare services. Do you see an opportunity here? How can Rymo solve some of the challenges here?
Some of the biggest challenges in long term rehabilitation are the need to travel regularly to physical clinics which might not be in immediate vicinity of one’s place of abode. This results in economic, time and logistics overhead on the family.
Rehabilitation at home is possible but especially for neuro rehabilitation it can also reduce the quality drastically as the tools that can be made available at home are limited. We believe our product can be used in a home setup and benefit the patient greatly as the space occupancy is minimum and operation is easy but it would need a physical therapist’s continuous guidance to maximise clinical results.
Going forward once Rymo is associated with a larger network of rehabilitation professionals we foresee collaboration opportunities that can be leveraged to deliver the most advanced rehabilitation at home.
What’s on the cards for Rymo this year?
This year Rymo is on route to complete its industrial design and launch its first product Mobi-L in India and make it available to 100+ rehabilitation centres. We have a goal to reach and positively impact the lives of at least 4000 individuals by 31st March 2023. These are a few baby steps which will help us democratise technology in physical rehabilitation and move forward in our goal to make India’s rehabilitation infrastructure one of the most advanced globally.
You can learn more about Rymo’s robotic rehab solutions here and connect with Chirag on LinkedIn.
Silver Angels Newsletter
The Silver Angels newsletter brings you news, stories and trends from the silver economy in India, in a short, easy-to-read format. Businesses, brands, investors, startups, researchers and analysts following this space are likely to find it interesting.
P S Srikumar (“Sri”) is the founder of Chennai-based Integrated Eldercare Solutions, which provides senior and assisted living, home healthcare and advisory services to individuals, families and organizations. An ex-COO of Randstad, Sri quit his job to become the primary caregiver for his mother. This life event triggered his passionate journey into the eldercare space seven years ago.
In this interview, I chat with Sri to understand the his experiences and draw key insights from his varied experience.
Sri, you are very passionate about the eldercare space and have traversed different parts of it. Could you give us a short background of the last seven years?
I had a very eventful 7 years in this space. I was lucky to have people who mentored me and gave me opportunities to understand different aspects of senior space that included projects in retirement community (CEO of one of the leading retirement community brands in India), launching and running the top products space in Chennai for a client – where we ran a shop in our office for a year on a build operate and transfer model, handling audit of day-care centres and old age homes funded by the Govt of India – Ministry of Social Justice for their partner, training primary care givers in specific areas of memory care and palliative care, partnering with the largest and only exhibitions and conferences business in the eldercare space, working on assisted mobility and working with parents with children who had disabilities. Each of these projects were intense and spanned over a year each, as it involved strategy and implementation.
Simultaneously, I worked with senior groups – individuals and communities. In the last five years we have helped over 5000 families find solutions to the day-to-day challenges they face in taking care of their loved ones.
Covid has had a big impact on the sector, particularly the rise in home eldercare and senior living space. What are the fundamental shifts you are seeing among families and elders?
Covid had impacted seniors significantly. It is a paradox that in spite of the family being at home, elders felt lonelier during the last two years, than ever before. Earlier, elders used to have “me time” once the children left for work and grandchildren left for school. This wasn’t available during the “work from home or study from home” situation. Besides this, was the need for silent homes. Absence of home help in most cases had elders finding difficult to manage and maintain homes.
Covid confined seniors to a space. Walks in the evenings, meeting with friends and relatives became impossible. And everything online was something they were not prepared for.
This is a time that the demand for senior living and assisted living saw a rise – because of the perceived personal space it offered, besides the safety. Unlike the west, the number of people affected by Covid in communities was very negligible in India. The communities exchanged ideas on how to protect seniors. Even vaccinations were done at these communities. From groceries to medicines, home banking to housekeeping, seniors woke up to a world that was now looking more secure and comfortable.
Access and affordability of care rose significantly – especially for elders affected with Covid with no one to take care of their daily needs. Cost of care almost doubled for people.
We were able to provide support and help to the elder community during this time. Some challenges that elders faced was to learn smart phone and applications like Zomato, Swiggy or grocery ordering – as they became necessities. Reluctance to learn gave way to necessity.
Intergenerational bonding increased (grandparents and grandchildren), though elder’s privacy in many cases was lost. Increased opportunities in area of home food catering helped many to overcome these difficulties. For many business it was disruptive time and for many others it was an opportunity.
You were a CEO of Covai Care, a pioneer among India’s retirement communities, and have work with leading players in the broader senior living space. Can you give a glimpse into how senior living offerings have changed over time?
I was fortunate to work with Col. Sridharan – who is a pioneer in the concept and founder of Covai Care. Retirement communities started off as extension of real estate. Till recently, in my opinion, many of them did not anticipate the ageing needs nor were prepared for ageing related requirements. Advertisements flaunted healthy ageing.
(Elder) Care meant an ambulance or a medical station. However, many things changed for better in recent years. From a customer perspective, the awareness and acceptance of senior living (which was often confused with old age home) has certainly increased. People accept this as choice. The taboo around the concept was giving way to acceptance. One good aspect was that different forms of living coming up be it independent living, co-living spaces, assisted living, memory care, palliative care, etc.
Industry organizations like the Association of Senior Living ( ASLI) and CII’s senior forum played a very important role. People started recognizing best practices. Eligibilities became entitlements. If you are on social media like Facebook or LinkedIn, it is very common nowadays to see advertisements of such facilities available. The overall understanding of this space has increased. International players have recognized India as one of the key markets, given the demographics.
Today the senior space has spread across segments like affordable senior housing and elite ones. Now standards for senior care are being looked at. The South had more than 65 % – 70 % of the market share. However, projects are coming up across the country, as the need for the segment has been felt by its stake holders. The market is surely expanding. Brands like Godrej, Tata Housing, Max, Columbia Pacific, LIC, Shriram Group etc., have forayed into the segment.
During our chat, you mentioned the need for more assisted living spaces and particularly those that cater to dementia and other mobility-related issues faced by elders. How big or small is this opportunity
The opportunity is large and substantial.
As living spaces become smaller, providing care for a person with mental health (Alzheimer’s or Dementia) or terminal illness (including Palliative Care), or for persons with disabilities becomes a major challenge. Post-operative care, step-down care or care continuum is a huge area that needs attention and prioritization.
The options available are very limited and information is also not readily available to the common man. At a stage, a person may not be in a position to manage a property by himself. Besides will need assistance for day to day activities. Affordability and access become a challenge. Even in a retirement community a person may have to move from an independent state to a dependent state. The community may not be equipped to handle the requirement. With less than 1 % of the elder population in a formal community environment, the challenges for the rest 99 % are humongous.
Memory care is another area which is very acute. We have had situations where except for the patient with dementia, the near family is not in India and a normal assisted living or senior community will not admit such a person. Parkinson’s, muscular dystrophy, terminal illness, visual impaired elders…the need is just huge and there is not much offer available today.
I work with the visually impaired, it is sad when one of my customers told me that after 60, they are considered a burden by the family (many of them don’t marry) and they don’t have a place to opt for. The Government runs a few facilities, but it does not suit many. It is time the society, business and government come together to address this issue. Besides a huge business opportunity, it is also a humanitarian need.
Carefinder.in is one of your digital products and you have assisted over 4000 customers make informed decisions about on a variety of aspects. How big of a challenge is lack of quality and reliable information in making decisions around living arrangements, etc?
Access to reliable information is still a challenge. But this is changing as the sector is moving into an organized set up. Very slowly. The share of unorganized market is almost 70% of the inventory that is available.
Web searches takes people to a number of options. But many sites provide information that have not been updated. And a lot of information is also obsolete so reliance is still on experienced people for suggestions. One of the biggest challenges is the fact that a choice of a community depends on many factors, specifically the social and economic background of the resident.
When one makes a decision, it is important to understand perspectives and the age of entry. A normal retirement community is wonderful if you enter at around 60 or 65 years of age. It helps you build friends for the next twenty years and adapt to the living. However, as you age, it becomes more difficult to accept and adapt to a community. Background of the promotors, organization structure, continuity of service and exit options are all key factors. There are hidden costs like a onetime non-refundable deposit or a medical deposit, and all this will have to be kept in mind while deciding on selecting a place.
Apart from working closely with businesses, you also provide 1-on-1 consultations to families seeking support for their parents and elders. Can you expand on the common queries, and how you think one should go about planning for later life living arrangements?
Many people are still not clear what type of living they need. All our consulting is on a 1 – 1 business. We do not believe that “one shoe fits all”. We probe. We put our understanding in writing and send it to the customer to validate our understanding. The common query is can you suggest a retirement community. This is an open-ended question. We need to understand their budgets, we need to understand and advice on buy vs. rent options, health and financial background of the persons, access to near blood relative in case of extreme situations. Some retirement communities have age barriers for entry and some others have health barriers. For example, not many communities accommodate elders with mental health issues or elders with children with disabilities. As a consultant, we need to know what to suggest and what would be a good fit. In many cases, the solutions we give are very different to what they came to us initially for. And to offer solutions, we need to understand the business also and hence, there is a B2C and a B2B connect here when we provide solutions.
For many seeking help on home health care, we have suggested assisted living – considering the support and economic reasons of these persons. We suggest people who are apprehensive to do a short stay in the communities and decide only when they are convinced that this is the best option.
It is important to plan a retirement living when you are around 45 years of age. 50 to 60 years is a very vulnerable age and this is where many businesses cash in. In this age group, one is into a midlife situation. Senior position in organization with work pressure and priorities, growing up children, ageing parents and personal health and hence a getaway to a distant place is what many think of. However, above 70, the need reverses. They like to hear noise; they like to meet with younger lot and not live in secluded places (most of them). This is one of the reasons that stand-alone communities are giving way to integrated living formats now.
You are active in many forums – CII, ASLI, Tamil Nadu govt, etc. What are three takeaways from that vantage point?
Understanding the industry and needs better
Understand other issues affecting the senior community in large, than just living
Prioritising requirements of a larger community and working on policy level suggestions to the government.
The Silver Angels newsletter brings you news, stories and trends from the silver economy in India, in a short, easy-to-read format. Businesses, brands, investors, startups, researchers and analysts following this space are likely to find it interesting.
Rima Pande is based in Boston, Massachusetts. His Voice, the book by Rima, is a first-person narrative of her father’s thoughts and emotions during two years after he suffered two strokes within weeks of each other.
A healthcare strategy consultant by profession, she is a parent to three amazing people, enjoys unstructured and experimental cooking, and “maximum” travel. Straddling the two countries, one as a secondary caregiver (to her mother in Delhi) and a researcher and cheerleader (while in Boston), Rima advocates a framework that can help people in similar situations to prepare and care for their parents and family members.
In this interview, Rima takes us through her journey as a caregiver, how she straddled two worlds, how normal got redefined with a new language and these experiences led to a personal mission.
Rima, you turned around a very personal experience into a book. What motivated you to write this book?
My father had two successive strokes within a month, leaving him paralyzed neck down and unable to speak or communicate in any manner. For two years, my mother served him, supported by amazing family, friends and helpers. We stared at the constantly changing expressions on his face for clues – was he too hot, too cold, in pain, hungry, uncomfortable, attentive, tired, sleepy, somewhat happy? We searched for direction, pretending to understand what he would like us to do, doing it, then searching for an imperceptible nod of approval. When he slept, I wondered what was going through his mind, trying to immerse myself in his stream of consciousness.
His Voice is a first-person narrative of my father’s unspoken thoughts and emotions during the two years he was bedridden, as he very thoughtfully dealt with a crisis where he has lost complete control of his life. The narrative of his current state is interspersed with memories of key life experiences that shaped him as a person, making it a memoir or life story of sorts.
Writing this book started a therapeutic experience for me, it helped me deal with a bunch of emotions that come with such life experiences – confusion, denial, hope, frustration, grief, regret. I really missed my father. His death, even though we had two years to “prepare”, created a giant vacuum in my life. I wrote the book a few months after we lost him, did not share the manuscript with anyone till 2020 when I drummed up the courage to have a few people read it, and hesitatingly decided to publish it.
During our call, you mentioned you are an only child and lived away in Boston. When you heard about your father’s first stroke, what went through your head?
The first stroke was a shock, and I flew to Delhi immediately. It was a huge relief to know that the impact was limited to his legs, and there was reasonable certainty that he would slowly regain movement. The second stroke, which happened within a few days after I had flown back to Boston, was devastating. I flew back with a sinking feeling in my heart – the mood had changed, the optimism had given way to a sense of gloom, terms like “quality of life” and “palliative care” were being whispered. I was in a state of denial, my brain refusing to accept that he may not be as lucky as he was with the first stroke. The moment he woke up and we realized how much damage the second stroke had done, my relief at his survival was tempered with a niggling sense of guilt – did we make the right decision to intervene aggressively and save his life? Had we consigned him to a tortuous existence?
Your father’s primary caregiver was your mother and she was supported by family, friends and others. How did you evolve your role and involvement during this time? Can you also tell us a little bit of the environment in Delhi and Boston?
My mother was the primary caregiver, supported by family and friends, mainly her siblings. I traveled back every two months or so for about three weeks at a time, taking a lot of time off work. I spent a longer time with them during the kids’ summer vacation since they went along with me.
My role was of a “secondary caregiver” – assisting, helping with thinking and planning, and support for the primary caregiver. I do believe that support for the primary caregiver, without judgement, is absolutely critical. We all have our own views about how things should be done, and while it is ok to share one’s thoughts, the person closest to a situation day in and day out needs to be fully empowered and made to feel comfortable that they are doing the right thing. I was also the “research assistant”, reading about his condition, medications, possible approaches to taking care of him, potential opportunities for innovative treatment, exploring clinical trials etc – not sure how much of it was useful, or just made me feel better.
The journey back to Boston each time was hard, accentuating the guilt considerably, and the only way I dealt with it was by planning my next trip pretty much as soon as I got back home. And by calling every day on my way to work to chat with my father (a one-sided conversation of course) and my mom.
A key challenge for me was finding the right balance between worrying about my father’s situation without it impacting the other people in my life, and continuing to give them full attention – household, kids, work. You can put your life on hold for short periods, but when it is uncertain how long a situation will last, you have to keep your “normal life” going. Normal does not seem so normal to you, and you expect your family will understand, support and pitch in, the reality is that life goes on – kids go to school, do homework and activities, etc. To me, going on a vacation we had promised them and planned was the hardest, but we did it. I was lucky to get a lot of their support when I needed it – my spouse would take care of everything while I was gone for weeks at a time, they came to India when my dad was first in the hospital, during vacation and then when he passed away. So, like many things in life, I maintained a delicate balance between the different aspects of my life.
Caregiving is an emotional journey as much as it is a physically involved one. Did you lean into any groups, individuals or systems to support this journey for you? In the US and also in India.
Caregiving comes with a multitude of physical, mental and emotional challenges. The mental load comes in many forms – the constant thinking, planning, anxiety; the need to stay strong and happy, not express grief and sorrow, to keep the patient’s emotions positive and tamp down the helplessness one feels at not being able to fix things; the additional pressure of being the main advocate for the patient. Through those two years, I was very concerned about my mother who, as the primary caregiver, was carrying this burden.
I had a strong support system. My husband took care of everything when I traveled. My kids independently managed when I was gone and went with me to help during two summer vacations. My extended family and friends, many of whom I knew I could call if I needed help, were there for me. Sometimes knowing that is enough.
Personally, for me, as I mentioned, it was an emotional roller-coaster. Regret was a large component of my thought process – regret for everything I had not done, regret at not knowing my father better as a person vs just a parent, regret at some of the decisions we made when the crisis hit. And I felt very alone, unable to express myself, frustrated by the cliched responses and advice I got every time I spoke to anyone, increasingly internalizing my emotions since I felt no one really understood how I felt.
So, I did not lean on any individual or group for support – even when the suggestion crossed my mind, I shrugged it off. The thought of delving into my personal thoughts was too overwhelming for me. I do think that writing this book was personal therapy in a way, my way of connecting with my father.
You advocate for a 3R framework for caregiving – Respect, Resilience and Realism on the foundation of Relationships. Can you break it down?
The 3R framework emerged naturally from my observations and learnings from my father’s and other experiences. In summary, there are 3 key pillars/ tenets of caregiving – Respect, Resilience, Realism, built on a foundation of a fourth R – Relationships.
First and foremost, respect. Paul Kalanithi in his book “Till Breath Becomes Air” said “until I actually die, I am still living” – As a person becomes more helpless, their sensitivity to everything said and done becomes more acute.
One of my key learnings was how important it is to maintain the dignity of a person who is in a helpless state. My mother set a positive, respectful, uplifting, happy tone in the house for my father. He was surrounded by people, music, conversation – what my book editor calls the “circle of love and care”. We all gathered in his room, for tea, for conversations. He was part of everything that happened, treated with deep love and respect. I believe that made him as happy as was possible given the circumstances.
Resilience – is about working with what life throws at us without breaking down. It takes an immense reservoir of courage and compassion to stay calm when your world is falling apart. It takes a lot of resilience to be loving and unfailingly patient, without it becoming deliberate or wearying. We have to find our strength in the way it works best for us. My mother was driven by her faith in god, her belief system “whatever happens happens for a reason, god’s will” … Her faith gave her physical, emotional, mental energy.
We also need a dose of realism, understanding that effort may not always yield the results one hopes for, while not giving up. We cannot fix everything, sometimes we need to manage it to the best of our abilities, while balancing hope and optimism. As the Gita says “Karmanyev adhikar asthe, ma phaleshu kadachana”
And there is Relationships – spousal commitment, the parent-child bond, family support, the many circles of friends. In the book Blue Zones, Dan Buettner explores the eating and lifestyles of the world’s healthiest communities. In addition to diet and staying active, one of the common threads among all these communities is a strong social fabric and sense of connectedness among inhabitants.
Medical crises make one more acutely aware of the invisible bond that connects families even as everyone leads separate and often geographically scattered lives, and the links one has within one’s local communities as neighbors, and people one least expected are there for you. It also highlights the importance of nurturing and maintaining family and community relationships. My mom was able to do what she did because she had her family’s, especially her sibling’s physical and emotional support through her caregiving journey – as well as moral and emotional support from neighbors and friends.
Your mother. If it is okay, can you tell us a little bit about how she dealt with the illness and also how your relationship with her has evolved through this experience?
My mother immediately took full ownership of the situation. As we mentally adjusted to the situation and started planning my father’s transition back home, she dealt with everything required for physical care – room set up, equipment, hiring staff, planning his daily schedule, medicines, therapy etc. More importantly. as I mentioned earlier, she created a happy environment. She talked to him naturally, always involved him, asked his opinion, held his hand, comforted him physically, always calm and happy and encouraging. And everyone, including me, naturally absorbed her approach and followed suit. My father was physically well taken care of, mentally stimulated, and emotionally nurtured.
Ironically, while I was emotionally vulnerable, my mother was my strongest support system, mainly by virtue of how she handled things, leading by example, never making me feel guilty for not being there for her all the time, and giving me strength and confidence.
I developed a new-found appreciation for her self-discipline, her unwavering focus, her positivity and her faith in God. I saw her vulnerabilities closely, but also admired how she managed them, and kept going. I learnt to be more patient with her, see things from different points of view, and be more tolerant of different ways of thinking. Our common grief and sense of mutual understanding and respect brought us closer.
Where does this journey take you next?
The book, His Voice, takes the reader on a journey through a person’s mind as he silently battles complete helplessness. It is also an interesting life story.
I am sharing my father’s story for two reasons: One, nothing resonates like a story, which makes a reader imagine parallels in their own life and relationships. I hope the book will help folks pause and reflect on the 3R framework which highlights the key tenets that one needs to keep in mind when faced with a healthcare crisis, from near or afar.
I hope this book will help anyone who has gone through, is currently going through or may face crisis situations, which unfortunately many of us do and are very unprepared for. And remember what Paul Kalanithi said, “Until I actually die, I am living.” Or simply, appreciate what they have. Two, I am on a personal mission to draw attention to the challenges associated with aging, disability, and caregiving, from a patient’s perspective — and advocate for discussion on palliative care and caregiver support systems.
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