Illness

Jackie Colaco sent me this rather useful reply to the below article. Living will is something that I have only recently gotten to know. As for body donation, someone dear to me wants to donate all her organs, but it is hard to formalize anything. One doesn’t even know where to start. As it turns out, St. Johns Medical College registers you for organ donation. Interested people may contact Jackie for more details. With her permission, am including her email here: Jacqueline Colaco

TO WHOMSOEVER IT MAY CONCERN

I , being of sound mind, do hereby declare in the presence of two witnesses and make it known to my family members, medical authorities, and others concerned at the relevant time, that in the event of my being pronounced brain dead and/or unable to take decisions regarding the prolonging of my life except with the assistance of artificial life support systems, have decided that I do not wish to be supported by and attached to such systems just to be kept alive.My organs may be harvested and used for donation wherever found fit. This is my irrevocable decision, not to be countermanded by any person in the above eventuality and I declare the same and this document as complete and final. I have signed this document on this day of
Signature:
Address:
1.Witness Name:
Signature:
Address:

2. Witness Name:
Signature:
Address:

Sat, Mar 02 2013. 12 21 AM IST

How do you help a friend whose father is ill?
What a family needs in times of crisis are three things: hope, expertise and distractions

Offer hope, expertise and distraction to those tackling the illness of dear ones. Photo: Thinkstock
Illness makes a family self-sufficient. When a family member falls sick, whether it is spouse, sibling, child or parent, the world ebbs away. Amid the unpredictable ups and downs that mark the course of disease, amid the tense discussions and helpless tears, amid the worry that produces insomnia and doubt, amid the dark cloud of uncertainty, are moments of clarity. Admitting someone you care about into the Intensive Care Unit (ICU) offers great perspective on life, love and what’s important. All those parties and social obligations; the neighbourhood gossip and finger-pointing about who did what to whom; the nit-picking with the fruit seller about last week’s rotten apples—all of that becomes inconsequential.
When a family member falls sick, it alters life in every possible way. The daily routine changes; calendars are paused; people change, sometimes for the better and many times, for worse; you learn things about your loved ones that you didn’t know. You learn how they handle pain, hospitals, blood, bleeds, stress.
Illness teaches you humility. When you are vulnerable, when nothing seems to work—not the tubes, IV fluids, antibiotics, steroid injections, or the doctors with their dual degrees—you have to accept the limits of human knowledge and intervention. You have to accept that you cannot control everything. This is particularly hard on Type As who are used to taking charge, calling the shots, and measuring results.
Healing is hard to measure. Illness warps time and marches to a beat that mocks concepts like effectiveness, transparency and accountability. Illness is accountable only to its own whims. The rest of us have to go with the flow; or fall apart. In situations like this, even the most agnostic might be forced to accept that there is such a thing as providence.
In between hope and despair are glimpses of the divine. Patients and their next of kin know this. They sit in the whitewashed corridors of hospitals, under bleaching lighting, with resigned faces and tired eyes, fingering their rosaries and muttering prayers. Faith gives strength when all else fails. If you are a non-believer, an illness might force you to change your mind.
When a friend or friend’s father is ill, what do you do? In India, we have the unique notion of “family friends”, where generations know each other; where your school friend’s father becomes your “Mamu” or “Chachu,” where your neighbour is a “Maasi”. Depending on your age, it is likely that you will see all these Mamus and Chachus ageing and ailing. It happens with work colleagues too. You will fix a meeting and a colleague will call saying he cannot make it because his father (or father-in-law) has been hospitalized.
What do you do? The impulse will be to show up to console your friend; to be there; and you must do that. Physical presence—a visit to the hospital—is necessary to show that you care. Among the numerous phone calls that accompany an illness, among the polite emails, how does the family choose who to engage with? By marking those who show up; who anticipate needs. Send over groceries, cook a dish—even the sick need to eat. Send flowers. Offer your car and driver for a day. Offer to donate blood. Your offer to help may be sincere, but realize that the line—“please call if I can be of any help”— is one that the family hears often from a whole slew of well-wishers. It is hard to differentiate who to take seriously.
Resist the impulse to call every day for progress reports about treatments and tracheostomies. The last thing a troubled family wants to do is repeat the same tired details again and again. Emails are great in this context because they are non-invasive. They make no demands on your schedule. Rather, they allow the family—your cousins, aunts or whoever they might be—to respond when they are free; when they are up to responding. After a week in the hospital, answering phone calls becomes a chore. It doesn’t help the patient. Asking for details from a family in crisis is—in the end—a selfish act because it soothes you, not them. What does the patient want? What does her family want? These are the questions you should be asking.
What a family needs in times of crisis are three things: hope, expertise and distractions. If you are a positive person and can tell your colleague—with authority, sincerity or both—that his father will recover, do that. If you know someone with expertise, be it pulmonology or oncology, offer to loop them in. The family may have their own slew of doctors and will likely refuse but there’s no harm in asking. Specific offers and suggestions stand out in times of hardship than the generic ones.
Distractions are tricky because when a family is deep in the throes of disease, the last thing they want to do is step away. But caregivers need distractions too, if only for an hour. The trick is to figure out how to give it to them. Take your friend for a walk if you live in the same building. Send over a DVD or a book. Ask him to meet you for lunch just outside the hospital. These are gestures that may be rebuffed; but later, when he gets out of the morass of anxiety that an illness entails, your friend will thank you.
Illness makes a family self-sufficient; but no family, not even one dealing with an illness, is an island.

Shoba Narayan has become self-sufficient.