A day at a time

Forget the relation of the person, how close she is to me and other issues. She is my life and we shall keep it at that. From December 27, our lives have turned upside down, moreover her life hangs in balance since

Before I embark saying anything, I urge all Indian parents, since they can influence their children, all adults to first make a ‘living will’. There is NO guarantee what can happen to us and when it will. This living will is for medical purposes–you want to be kept alive at any cost or would you want to live with dignity till your breath allows you. Because if you don’t make this will, it is not fair to put the onus on your children, (however old) to decide for you. The children are then forced to act on your behalf, in the best interest. Basically, ventilator is NOT living, it is extending life forcibly. And my opinion, after the age of 80, putting a person on ventilator should really be disallowed.

Sadly this country has a judiciary that seems to dictate our lives and have banned euthanasia. It’s the most fucking bizarre ban. Would like the judges to come over and see, why only brain dead should be allowed to die with dignity. Dying with dignity is a fundamental right of any human being. But we being Indians, ruled by regressive traditions, we forget reason and more over human dignity.

Secondly, GO AND READ DR ATUL GAWANDE’S BEING MORTAL. It is truly needed. We all are going to die one day. This does NOT Mean one does not try within one’s reach all the medical options, often beyond what one can afford. But it also means dying with dignity and allowing those who need it.

On December 26, when S began shouting my name and said she cannot bear the pain, the family doctor was called and she was rushed to the hospital. She suffered severe cardiac arrest which made her unconscious. This was in the casualty room, known as emergency room. She became unconscious and has been since then.

The doctors took 7-8 minutes to revive her. Since then she was on a ventilator. The hospital and its staff, moreover doctors are extremely good. My school friend R has been rock solid and were the same voices. It is difficult to accept the situation for some. Each grapples with the situation in their own way. But above all remember if you are close to someone, their feelings, how they lived and would have liked to live or die is paramount. That should be the core of all one’s thoughts, NOT we want to all at any cost. Talk to your elders, family members– do they have any wish, anything that they’d want. S had liked my idea of organ donation, something which I had discussed with her and her Mr years ago. Ironically, just before she fell ill, few days prior to that, she had requested that I write a letter on her to behalf to the family doctor, who had lost her mother and friend of S, expressing her desire to donate her organs or give her body for medical research. But then everything just changed since December 27.

Each one has the over riding feeling they don’t want the last memory of their loved ones on ventilator or in tubes. Nobody does, but if that is the reality, then one needs to accept it. Keep loving the person. From the second day I differed with the family dr and siblings. Because by then I had studied the reports, spoken to doctors and when all tell you, “have faith, there is hope and believe in miracles,” READ THE FUCKING UNDERLYING MESSAGE… NOTHING CAN BE DONE, just take things as they come.

Remember the over riding rule, hope is the most exploited sentiment in the world. And there are whole lot of means and methods to exploit this sentiment. Also remember, once admitted to ICU, this sentiment is exploited. It does not mean you give up, NO. It means think of ways to make the person’s remaining time in the world more dignified, easy and practical for the family.

Once S was brought home, we are learning a lot along the way. It’s on-going. First remember, you need an air bed, hospital bed with a lever, rubber mat, soft big pillows, hard pillows, plenty of hand towels for the patient, nurses (we shall come to that soon), or trained ayahs working in shifts

Entire new diet plan in consultation with doctors, hand mixie, separate vessels, bowls, spoons and a huge vessel for sterilising all crockery and cutlery to be used for patients. Disposal gloves, masks, wet wipes, scissors, thermometer, torch, gowns, oil – olive, coconut, oodh, dhoop.

Firstly keep your views, personal feelings aside and think of what does the patient like around her/him? Well I also put few drops of wine on her lips so remember it’s what that person likes and their lasting memories, while still amidst us.

Have asked the top worker to brings fresh flowers daily. So when S was brought home, since then, fresh flowers are around her, her favourite perfume Chanel no5, which is sprayed on her, her pillow; her favourite music, favourite food is cooked and we all eat. We have a happy environment of serving tea, coffee, snacks for all.

Now coming to few practical requirements, we are lucky since family docs live across and entire family is in medical field. Moreover we live in ‘dinosaur land’ so all neighbours have some gadget or things which are needed. You never know when emergency will stirke.

Tie up with whole sale pharmacist, surgical shops. We again are lucky to live in an area where both are in abundance. You need regular supplies of : gloves, wept wipes, creams, ointments, options, medicated hand sanitizer–enforce it on all, just do not allow anyone to touch the patient otherwise, even if family member, male a list of things needed. Oxypulse reader, BP machine, stethoscope and ask the doctors.

Most of all keep the environment warm, normal and friendly. Remember, even if in coma or not, unconscious state (as in this case), the person IS STILL ALIVE. The person opens eyes, responds to feel, touch, smell and voices, then we owe it to them to make it memorable.

Think of all those the patient has liked, likes, is fond of, either ask them to visit or make video calls, don’t miss on anyone. Let there be people around, always. Crack jokes, tell stories, goad, tease, as one would when the person was speaking to us.

A vital and can’t do without integral part of palliative care, is lot of people are the nurses. Now every ward boy and nurse has started their own bureau, and if you don’t believe check around. Prices vary with most expensive rates in SoBo, because of its location. But if you befriend them and ask them to come directly, its less expensive. You spend an average of ₹2700-3000 is daily nurse expense. Well, equivalent to one month’s pay, literally. It is an expensive feat and most medical insurance conveniently do not cover nurse expense. Something may be you all need to anticipate and plan to include.

Most of all remember, 100s will give you unasked for advice, especially those seem to have ‘seen’ witnessed miracles, dead person walking types. Many self-medication experts will not wait for your response. Simply ignore it, since they will blabber on names of ‘babas’ fraudsters who give some powder or magical cures for those who docs have given up on and are now running marathons. Sure, you know what, mumble to yourself or in your mind, “shove it right up your arse.”

I am sure meditation helps to calm our nerves, some soothing sholokas. Use practical sense which does NOT mean giving up and Live life everyday, is all it tells us.

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