Pyaar, mohabbat, aur seva

In the runup to my fatherrsquos death in February 2021 due to a brain stroke he was almost unrecognisable and it had nothing to do with the way he lookedUntil then my father mdash or Pastor Bhaskar Bhosale as he was known to his parish mdash had an exceptional track record of never giving up be it in a career setback or a personal one His ldquolife hackrdquo was to simply ldquopower throughrdquo while also enjoying every second of it So when he suddenly fell sullen and disappeared into himself we werenrsquot prepared nor did we understand itThe stroke that took him came at the end of a series of small ones that began in 2016 and eroded his mobility taking away his passion to drive memory speech and his unique brand of humourSo a few weeks ago when someone mentioned that palliative care in Mumbai has now become more nuanced it sparked my curiosity No longer is it thought of as an endoflife measure it can also help manage chronic illness like kidney failure or heart and brain diseases Most importantly it helps with depression and anxiety for both the patient and familyCould this have made it easier for my father or at least helped him mdash and us mdash to come to terms with the inevitable while still enjoying the precious time we had left togetherItrsquos perhaps a similar question that drives a few in the city whom wersquove encountered over the course of this story who have turned their grief into a way to empower other patients and familiesWhat is palliative careIt is specialised medical care for anyone living with a serious illness providing relief from pain physical symptoms such as nausea fatigue and emotional stress counselling for patients and caregivers and even assist patients and their loved ones in making informed decisions regarding their care and bodily autonomy such as with a living willGrief and guiltRoohi Shaikh is grappling with grief after losing her mother in JuneAfter a short wait outside a building in Jogeshwarirsquos Patliputra area a woman walks out and gives us a small shy smile Roohi Shaikh a 47yearold homemaker lost her mother Neima Khan on June 6 ldquoMy mother had already had ups and downs in health for over 15 years but in 2019 a stroke left her bedridden In the end she lost her hearing speech and memoryrdquo she saysLike most stroke cases that first episode dealt a difficult blow but as Roohi and her mother would discover there was a lot of life yet to be lived mdash in Khanrsquos case seven years after the first strokeRoohi and Abdul Shaikh at her late motherrsquos residence in Jogeshwari The couple are in the bereavement stage PICSSHADAB KHANRoohi and her husband Abdul Shaikh had been worried about how to best care for their ailing mother It was during a visit to Cooper Hospital that they learnt about Romila Palliative Care ldquoAt the time we were told that they help people who take care of people like my mother To be honest I never knew that this kind of care existsrdquo Roohi recalls ldquoThey would come and meet herEven though she couldnrsquot speak they would hold her hand and keep talking to her Theyrsquod ask how she was doing even though she couldnrsquot replyrdquo she says repeating the last line as if this particular act of humanity afforded to her mother was what she was most grateful forWe walk up the narrow staircase peculiar to MHADA homes straight into the flat where her mother breathed her last The oneroomkitchen with chalkypink walls is no bigger than 600 sq ft and it took the entire familyrsquos efforts to scrounge up the rentA reallife example of what palliative care entails plays out before us as the family struggles with the question ldquoDid we do enoughrdquo Romila team leader Dr Ashutosh Joshi reminds them they did everything they couldWhen Roohi seems guiltridden Dr Joshi tells her ldquoMadam you have done so much for your mother sometimes even people who have the means to do this for their parents donrsquotrdquo ldquoLet us be thankful that she passed on without too much agony and at home surrounded by her loved onesrdquo he addsTo us he says ldquoPalliative care also means to reduce pain We make sure that we give the patient a comfortable life not because they are nearing death but because they are not mdash their disease is something they will have to deal with for a whilerdquoSometimes itrsquos the family members who need their pain to be eased even after the patient has passed on As we leave Dr Joshi says ldquoWe will have to give more bereavement counselling than initially given Roohi is strugglingrdquolsquoWe help patients feel less helplessrsquoDr Bhavika Hotchandani from the Romila Palliative Care Centre tells us about how Mumbai is learning about patient care one by oneOur first point of contact in the palliative care sector in Mumbai is Dr Bhavika Hotchandani director of Romila Palliative Care Centre headquartered in Bandra West The centre itself was the result of its founder Dr Armida Fernandez losing her daughter Romilla to cancer while the latter was in her 30sHotchandani who has been in the industry for at least a decade says she is frustrated on hearing people say that they do not think palliative care is for their loved one because they are not dying ldquoTrue support isnrsquot just physicalmdashit spans the psychological social and spiritual dimensions of a patientrsquos liferdquoshe saysldquoRestoring Autonomy Chronic illness often takes away independence Giving patients back choicesmdasheven small onesmdashabout their treatment and care restores a sense of self and control to people accustomed to directing their own livesrdquo she addsThe staff not only do monthly or weekly house calls depending on the patientrsquos health but also train the family in basic healthcare Some of this involves administering injections or a bottle of saline if needed Each home visit can go on for as long as three hoursAt the same centre in Bandra West patients with different levels of mobility also drop by for checkups and physiotherapy mdash this is all provided for free including medical materials like adult diapers and even grains for those in the economically weaker sectionWhat piques our interest the most though are the home visits where the work unfolds in real time So at the first chance we get we accompany team leader Dr Ashutosh Joshi and retired nurse Kunda Randive on two such visitsWhen you truly embrace itRupesh Jadhav 46 was hit by a brain stroke in 2022Jadhav Chawl is located on Sahar Road a few meters from the Hotel Suba International The chawl is one storey below the road level and when we dip under the tree that marks the entry of Rupesh Jadhavrsquos small home we see him seated on a plastic chair beside a small table holding the clutter of his everyday life mdash his medication hair oil and other household itemsWhen you look closer you see the signs of a stroke that has taken away movement on his right his speech and mdash like most in his situation mdash his patience too as his two sons Shubham and Rohit tell us Shubham the eldest was in his third year of college when his father suffered a brain stroke in 2022 while Rohit had just appeared for his Class 10 examsShubham recounts the progress since they started palliative care in 2023 ldquoWhen we got him home from the hospital he was in and out of consciousness speech was almost zero Today he is walking around and alert enough to understand what is happening around himrdquo says the elder sonldquoThe first six months were the worst We were not sure what to do but when they Romila told us that physio would help we took him to the centre every week Now we are just so grateful to themrdquo he addsJoshi then asks Jadhav to walk and show how much progress has been made and tells him to continue to exercise As we leave the younger son Rohit seeks advice from Dr Joshi and nurse Kunda Randive We move aside to give them some privacyFinally Dr Joshi repeats a mantra that we had heard him tell Roohi earlier ldquoPyaar mohabbat aur seva remember this mantra when you feel that itrsquos getting too much Itrsquos our mantra but it works for the families of patients as wellrdquolsquoI didnrsquot want anyone to go through what my husband didrsquoPheroza Billimoria turned her grief into action founding Palcare mdash a palliative centreIn 2013 Jimmy Billimoria lost his battle to cancer Two years after that Pheroza his wife learnt about palliative care and realised that it could have made Jimmyrsquos final days easier and more peacefulPheroza BillimoriaToday she helps bring this knowledge to other families struggling like she once had She founded Palcare a palliative centre in 2015 While it primarily works with cancer patients they are working to go beyond onlycancer palliative care ldquoUntil we hone our skills in other areas we donrsquot want to take on patients and do a halfbaked job As of now we have started taking about 20 per cent noncancer patientsrdquo she says The organisation specialises in home care This includes endoflife care Billimoria says that around 86 per cent of their patients opt to spend their final moments at home ldquoMost of our patients pas away within five to six months if they feel that they donrsquot want to pass away at the hospital and would be more comfortable at home we work with both the patient and family to ensure that they are at peace with the decision Of course there are a few people who still panic and rush their loved ones to hospitalrdquo she addslsquoYudhishthira was right about deathrsquoJerry Pinto who wrote a book on palliative care says planning for sickness and death is as human as we can getJerry Pinto author of A Good Life The Power of Palliative Care comes from a place of dealing with his own humanity and what his mother went through in her final days ldquoI think my mother would have benefited from a variety of therapies and pills on offer now I think we he and his sister would have benefited from some form of palliation too as caregiversrdquo he saysJerry PintoWe have often heard many say that it is apshagun bad luck to plan for the worstcase scenario but Pintorsquos book talks about the importance of dignity of life ldquoWe have many beliefs about death most of which are designed to help us avoid thinking about its inevitability Yudhishthira was right We see death but live as if we are immortal This measures like a living will is as human as having a bucket list mdash an acknowledgement that we cannot live forever and must thus plan to maximise our time hererdquo he addsWhat is a living willDr Smriti Khanna Palliative Medicine consultant at the Living Will Clinic PD Hinduja Hospital amp Medical Research Centre explains who itrsquos meant forldquoA living will is basically a way to record your medical preferences for a time when you are not able to communicaterdquo says Dr Smriti KhannaThe best time to do this is when you are hale and hearty ldquoIn effect you are planning for your medical future There are three categories of people who can make a living will The first is someone who is fit with minimal or no illnesses who just wants to plan for the future This includes planning for accidents or injuries that may leave them in a permanent vegetative staterdquo she saysDr Smriti Khanna Dr Ashutosh Joshi and Bhavika HotchandaniThe second example is ldquopeople diagnosed with a chronic illness They may be okay at present but they know that a few years down the line the disease might make them dependent on a lot of medical supportrdquo she saysldquoOf course the last scenario is when you have a devastating diagnosis a terminal disease with say a year to liverdquo she adds The clinic helps you tie up with your GP so a copy is with the doctor your family and the family lawyerOne has to be 18 and above to draft this documentTo contact the Living Will Clinic call 022 67668181 022 45108181lsquoI donrsquot want to burden my son with the decisionrsquoIn 2025 the city got its sole living will clinic Sarita Bahl is one among 100 who signed oneFor many of us handing over the power to make choices about our body is a sombre thought But if there ever comes a day when yoursquore in the hospital and unable to speak for yourself a ldquoliving willrdquo can empower you to lay down advance directives for what measures you would like doctors to take or avoidSarita Bahl has signed a lsquoliving willrsquo that has been approved effective from 2025 PICSAYYED SAMEER ABEDIThe Supreme Court first recognised the document in 2018 and it was eventually simplified in 2023 after a number of procedural complications were flagged This is not just a document for life and death but for any medical situation in which you are incapacitatedThe empowerment and dignity this ensures resonated with Sarita Bahl a 62yearold who took matters into her own hand and signed a living will early this year She did this with the help of P D Hinduja Hospital amp Medical Research Centre which runs the only living will clinic in the city if not the country ldquoWhen I turned 60 in 2024 I threw a huge bash to celebrate the beginning of my life Then it was like lsquookay whatrsquos nextrsquo So my first step was to make a living will and the second step was to start a trust for my sonrdquo says Bahl The intention she tells us was to ease the burden of choice for her family ldquoI didnrsquot want my son to bear the burden of taking the call when the time comesrdquo she addsldquoI really had no problem in deciding what to do I was very clearrdquo she says when asked what her directive entails ldquoThere are the medical conditions outlined and approved by the Supreme Court and health authorities They have to be followed Once the doctor says there is no cure no hope thatrsquos it There is no need to debate the ventilator resuscitation or wait for another line of treatment to come inrdquo she saysWe are slightly envious of the Bahlsrsquo clarity How have her family and friends reacted we ask ldquoVery funnily two kinds of reactions came inrdquo she says Some agreed with her choice Her son though ldquowhen he saw the will it hit him he said lsquoI would want to hope I donrsquot want to give uprsquo Thatrsquos when I told him that it has to be done and he agreed to respect my wishrdquo she says