The day I dreaded and looked forward to....

Anna on 27th Nov 2017

4^th Dec 2017 11:05 am. Anna is declared dead.

Though, I knew the day was coming, and Anna & I had prepared ourselves for end-of-life, I wasn't really ready for it.

When I became my father's sole caregiver, I researched, in greater depth, end-of-life events for someone with Parkinson's. I learned that no one dies of Parkinson's disease, they die with Parkinson's disease. Major causes of death are aspiration pneumonia & other pulmonary infections, inability to swallow, and falls.

I discussed these end-of-life events with Anna. He knew them all, for he had researched them way before I had! He was clear about what he wanted and did not want. He wanted to die earlier than later. He did not want any cardio-pulmonary resuscitation. He wanted no tubes to keep him alive - no ventilator, no feeding tube. No what he called, "artificial and invasive ways to keep me alive." 

So I expected the worst. I knew Anna was dying. I was prepared / preparing for the long haul of managing a bedridden Anna. Possibly one who would need to be in a hospice for a period of time. An Anna that I would have to see struggle for every breath or starve to death.

And in the end, thankfully, his heart just gave up.

My family, friends, and readers have asked how Anna passed away. They want the details. Before I give the details, let me tell you about a "play-rewind-play" dream that robbed my sleep for over 3 weeks before Anna died.

I would dream every night. Dream that I get a call from one of the attendants to tell me that Anna is seriously ill, and I need to come over post haste. In my dream, I rush out of the house. I walk a few meters towards Anna's house. I look down and see that I am wearing my pajamas. Mentally I admonish myself. I can't walk outside my house in my pajamas! 

Wearing my trousers and keds.
I think I am probably the only person who 
calls "sneakers" keds  

The dream rewinds and restarts with the call. This time, I change into trousers. And walk a few meters ahead of the last time in the dream. I look down at my feet and see I am wearing rubber chappals. Not the right footwear to take Anna to Emergency! 

The dream rewinds and restarts with the call. This time, I change into trousers and keds. Again, as I reach a little ahead of where I was in the earlier play of the dream, I realize that if this is really an emergency then I should be taking the car.

The dream rewinds and restarts with the call. This time I wear my trousers & keds, and take the car.

This rewind and replay dream continues with one additional practical observation and event added each time - grabbing an extra shawl, checking to see if I have enough money in my wallet, carrying Anna's medical files bag & his hospital go-to bag, and so on. Sometimes I reach his house to find that he has passed away, sometimes I drive Anna to the hospital.

3 weeks of this, and I am just tired.

Then on 4th December morning, I am just about to have a shower, when I get a call from Alex (Anna's household help). He tells me that I need to come immediately. I hear voices in the background shouting "Anna!.....Anna!". I ask him what's happened. He tells me that Anna suddenly opened his eyes and his breathing is ragged and shallow. I quickly change into trousers, keds, check my wallet, grab a shawl, and drive down to his place.

When I reach there, they are still shouting "Anna!.....Anna!". He is sitting on a chair, slumped to the left. I see a sheen of white on his lips. I call out to him but get no response. I try to take his pulse at his wrist and his neck. I put my fingers under his nose to feel for his breath. My hands are shaking so much that I can't feel a thing! Subconsciously I know that his is going or gone, but my protective instincts have taken over.

I tell the attendant and Alex to put Anna into the wheelchair so that we can take him to the hospital. As they lift him into the wheelchair, he suddenly becomes limp. We wheel him to the car. Four of us try, with little success, to get Anna into the rear seat of the car, until finally, the attendant lifts him into both his arms so that Anna is sitting on his lap like a child.

Photo courtesy: www.bbc.com/news/health-19989167

As I drive to the hospital, I ask the attendant if Anna is breathing. He says, "No". It takes me over 15 mins to get to the hospital with what I think is my dead father in the rear seat of my car. I hold the steering wheel hard and blindly follow my mental chant, "Breathe deeply and drive". Over and over again.

At the hospital, Anna is loaded onto a stretcher and rushed into Emergency.  Four nurses and a doctor do a vital stats check and start emergency medical care. I hear a nurse tell the doctor that the oxygen (administered thru his nostrils) is coming out of his mouth.

That's when the tears start to fall. That is when my brain understands, really understands, that Anna is no more. My heart already knew.

In the end, his heart just gave up. It strikes me as odd, that I never realized that a disease that impairs muscular movement, could affect, would affect, the strongest muscle in the human body, the human heart. Thankfully it did. Swiftly and efficiently.

I Don't Want A Green Deepawali

I tell Anna that we can take him home
from Neptune Hospital on 1st Oct 2017.
He is pleased.

I don't want a green Deepawali. Yet I want a reduction in air pollution. I am conflicted and am finding it hard to choose a side.

I truly, truly believe, and have advocated for, more stringent controls to improve the quality of air. 

I have to weigh the destruction of the environment, with wanting to give my father, my dying father, something that will surface pleasant memories. Pleasant memories, that I hope, have the strength to sweep Dementia fog away. It's all the more important now that he has just returned from hospital.

Anna was discharged from hospital on 2nd Oct. He had a severe bronchial infection, that  galloped from a slight fever to a compromised lung & wheezing in just 24 hours. It was so bad that I could hear him struggling to breathe from the front door. Thankfully, he spent only 8 days in hospital, all but 1 day, zoned out and unresponsive. He's back home now, 5 kgs less, stiff as a board, not eating much, and speaking about 10 cogent words in a day.

Anna in happier times

Each illness sets Anna back so much that I wonder whether he will ever recover and be his old self. Whatever that old self is, for it is not the vibrant, laughing man he was, before Parkinson's and Dementia kidnapped him in front of our eyes.

Now, when Anna responds to me, I feel good. Tho' 10 softly spoken words are not much, it's better than nothing. I think he is looking sad, but he hasn't said anything. What worries me is that he wants to say something but can't. It's terrible. Just imagining it frightens me. It can only be worse, much worse, for Anna.

I decide to pep Anna up by telling him that Deepawali is around the corner. Deepawali has a special place in Anna's heart. 

First because of the lights. For days before Deepawali, we wheel Anna around the colony so that he can look at all the houses, bedecked with strings of lights - straight lights, dancing lights, bling lights, reflecting globes, strobe lights. Each house uniquely lit up and wanting to show-off a part of their owners' soul.

The second reason Anna loves Deepawali is because of the simple, childlike excitement of lighting crackers. Last year, like a little boy, Anna asked me twice a day, every day, for a month, when Deepawali was! He told me about how he and his brother made firecrackers in their childhood. This year there are going to be no stories. There are going to be little or no crackers given the Supreme Court's ban on the sale of crackers in Delhi.

Anna's favorite Vishnu Chakhra

I know we want to reduce the amount of pollution that will blanket the city. The pollution that will make our eyes water and throats dry. A living pollution that is killing us, inside out. 

But, Anna has a few pleasures in life and a few years to live. Maybe just a year. Is it really so bad for me to want to light 6 sparklers, 4 chakras and 4 flower pots to cheer him up? I have crackers left over from last year, and lighting them will just add a soupçon of pollution. 

I really want to burn crackers for Anna. 

But can I, in good conscience, given our air pollution problem? 

Should I? 

Will I? 

When Life is a Bitch, What Else Can I Do But Laugh!..... Really??

That's right! "Try to laugh", that is. For life is a bitch. A real bitch! 

Specially for caregivers, for whom the alternatives of crying or running away or changing the situation, do not exist. Often, cries for help are not made, or when made, are not heard or understood.  Caregivers just have to learn that everyone believes their life is complicated and tough - taking on an additional responsibility or carving out time to help, is asking for a lot. 

Want to know what its like? Here's a quick tour of my bitchy-life's last 5 months.

April 2017: My father's major-domo, Tairas, goes on vacation for 3 weeks. I rearrange my life  and work schedules to be Anna's major-domo for that period. 10 days later, Tairas calls to tell me he is not returning. A 21-day extra-work schedule turns into a 7 week extra-work grueling schedule. The new major-domo, Alex, arrives May 23rd. Somewhere in the middle, I battle an infection that leads the doctor to ask me to have a punch biopsy. I wonder when I will get the time to do this.

29th May 2017: My father-in-law, Daddy, who is 92 years old, is diagnosed with Acute Myeloid Leukemia.

June 2017: We are told that Daddy has 3-6 months to live. Given his age and the progress of the disease, we decide that managing his symptoms and ensuring quality-of-life is more important. We have 2 hospital stays in a month - once via Emergency and once for a blood transfusion. Sanjiv, my husband, spends almost every waking moment caring for him. The tables are turned, as Anna is wheeled daily to meet my father-in-law.

July 2017: Daddy is visibly deteriorating. On 14th, I am conducting a program in Gurgaon. At 3 pm, Sanjiv calls to tell me that Daddy passed away. The next 10 days are a blur of arrangements, people visiting, etc. End of the month, my mother-in-law, who is 82 years old, spends 5 days in hospital with acute gastroenteritis.

Sanjiv lies in the same hospital room as his mother;
 separated by a few days

August 2017: We rush my mother-in-law to emergency twice. She spends over 10 days in hospital, 5 in MICU. Acute gastroenteritis again. And again, I spend the days at the hospital while Sanjiv spends the nights. Finally, she is back on 19th. On 21st Sanjiv starts a fever that sends him to Emergency on 28th with Dengue. Somewhere in the middle of all this, I manage to get my punch biopsy and it is clear.

September 2017: Sanjiv is released from hospital on 1st afternoon. That evening, my mother-in-law tells me she has bleeding piles. Off to the doctor I go again. By the time I am back home, I am literally teetering on my feet.

And thru all of this, Anna and his needs are the lowest in priority. Anna understands ~70% of why I can not be with him more often or spend time with him as I had before. For the 2nd time in over 3 years, I get angry with him and yell at him. And cry afterwards.

Sept 2015: I am so tired that I fall asleep,
while at a friends place, just after dinner

During this time:

• Some family and friends do what they can to help. Offering vs being asked. And when asked for help, providing it and more, without hesitation. 
• Some are downright insensitive and uncaring. I hear every excuse in the book, from "I have work to do" to "everyone's life is complicated, yours isn't special". 

So what can I do but laugh? And wish that the helpers never have to be in my situation. And the uncaring brutes? That they go thru a part of what I have, to know, really know, how bad it can be. I hope that it will make them more empathetic. Am I being uncharitable, mean, selfish, and a bitch. Yes, I am. It feels right!  

Chances are, that you know of at least one caregiver in your family / circle of friends. A parent or sibling, a cousin or an uncle / aunt, or a friend. You probably get a small view of their world when you visit them or call them (if you call at all!). That caregiver, is slowly dying without you knowing it. Worse still, is that they themselves aren't aware of parts of them that are dying. And dying they are. 

As you battle with the challenges of living a full life & leaving a legacy, your caregiver's battle is with death. The death of the patient. And their own death - the stresses of care-giving have been known to shave off 10 years from a caregiver's life.

Few people can understand the stresses and strains of care-giving. Even caregivers themselves will tell you that their stint is unique and different from others. But you can make a difference, if you really care. Really. Care.

1. Give the caregiver a break. Not a day or a week. Give them at least 3 weeks off where they can go somewhere and really wind-down. 
2. Know the patient and their care-giving requirements well so that you can provide hospital stay relief when needed. A good night's sleep does wonders for a caregiver.
3. Ask caregivers how they are. And listen. Their health, both mental and physical is important, and they will ignore it. Help them improve their health. Take them to a doctor, commit to exercising with them regularly, take them for a movie or a meal. There are at least 50 things you can do to help.
4. Commit to help. Be consistent. Don't pull back after telling a caregiver that you are ready to help. That is cruel; like offering a drowning person a life jacket and then pulling it back when they reach for it.

If you care, then reach out to help a caregiver. Today!

'Coz laughing ain't gonna help.

And life is a bitch. A real bitch!

The Changing Language of My Mother Tongue

My father, Anna, can speak English, Kannada,
Tamil, Malayalam, & Hindi
with varying degrees of proficiency
Photo Courtesy: theodysseyonline.com

When people ask me, "What is your mother tongue?", I say Kannada. But that is not true. If mother tongue refers to the language I grew up speaking, then my mother tongue is English (I duck to avoid the imaginary spears of anti-nationalism being flung at me as I write this!)

My father was born and brought up in Tamil Nadu and hence reads, writes, and speaks Tamil fluently. He learned English in school, Malayalam when he was posted in Kerala, and Hindi, when he was required to pass a mandatory Hindi test to get a Central Government job in the '50s / '60s.

My mother was born and brought up in Delhi and hence was fluent in Hindi.

As we are Kannadiga Madhwas, we all speak Kannada (me haltingly, often searching for words in desperation!) Most of the time, I speak with Anna in English, our primary language of communication.

My parents, sometime in the early 70s

I learned Hindi only when I was 9 or 10 years old. Till then, Hindi was limited to the Bollywood songs my mother listened to on the radio. At that time, we thought our father spoke great Hindi (it sounded so much like the songs we heard!) We still laugh when we think of how impressed we were when Anna said, "कलम में स्याही है" ("There is ink in the pen") - his earliest recollection of learning Hindi was not the alphabet but this sentence. It was only much, much later that we realized that Anna's Hindi was South-Indian accented with a very limited vocabulary.

Anna has a great sense of humor, and is a master of the art of quick repartee. This is not just the pride of a daughter, you are reading, but something you will hear from almost anyone who meets him. Before Parkinson's Disease and Dementia stole his ability to be quick and nimble with his words, Anna was the center of attraction wherever he went. Whether the gathering spoke English, or Kannada, or Tamil, if you heard laughter, you were sure to find my father holding court!

Parkinson's Disease and Dementia, now lets us experience only a small percentage of his wit and repartee (as you may have gathered from my blog-stories at Parables of a Parkinson's Patient). But it is still there, and it is still communication, whether in English or Kannada or Tamil.

10 July 2017: One of Anna's "not all there" days

Where once our language of communication was words strung together in any which way we pleased, we now often speak gestures and facial expressions. A language that involves more than a soupçon of detective work based on a long relationship of shared experiences and oft-repeated stories.

I now hear Anna tell me of his pain in a frown, or his confusion in the wrinkled lines of his forehead. I see his happiness in his toothless smile and his childlike excited chatter in the twinkling of his eyes. I hear him struggling to find the right words in his tired frown and the slight upward movement of his pupils.

We don't know them all
but
We owe them all

22 July 2017 at Saket Select Citywalk

I know he is asking for his head to be scratched when he repeatedly tries to raise his fingers to his scalp. A half-raised arm means he wants to wipe his nose or the drool from the side of his mouth. I can now distinguish a Parkinson's-induced twitch of a hand from the gesture that points to an object to ask what it is. I know he is stiff when I can see his weakened muscles strain under his paper-thin skin. The slight shifting of weight from one buttock to the other tells me that he wants his back rubbed or scratched.

A lot of our language of communication are these long-duration macro / micro-expressions. A language I have learned without any formal training, and one that I am teaching his attendants.

This new language is not my mother tongue but is starting to feel just as familiar.

There is no appropriate name for this language - perhaps we can create one!

Do you have any suggestions?

--First published in The Quint on 27 Jul 2017

Confessions of a Daughter

Feb 2017
Anna cranes his neck to see something on my phone :-)

Dear Anna,

This Father's Day, I thought I would jazz it up a bit and write you a letter. I know as a family we didn't really celebrate "days". The most we did on a birthday or anniversary was to eat ice cream. No presents. No special dinners. No flowers. After all, it was just another day. But every now and then, I wish someone would throw me a surprise birthday party. Or give me a present, or send me flowers or take me out to dinner. Just like that. For the fun of it!

So, Anna, out of character and tradition, this year I am going to tell you things I have never told you before. All in honor of Father's Day.

I loved that you were goofy with us when we were kids. The only father we knew of, who would scare the the living daylights out of his daughters for fun, or read Asterix, or specially drive kilometers out of the way, so that we could experience a bumpy ride.

I was in awe of your ability to crack a joke on any subject, and be the center of attraction at any party, solely because of your wit. I was and am in awe. And definitely, jealous.

I still remember that you called me aside and told me to stand up for myself, when my siblings stole my share of treats from the fridge. I did learn to stand up for myself. And now I often find myself in the corner of the underdog in a fight.

I still shake my head with disbelief that you think that "idiot" and "fool" are curse words! You would admonish us gently with a "Don't use dirty words!" when we did.

I do not know where the picture I dislike is!

I am irritated that the photo of me that you like is a shot of me leaning against a lamp-post, sulking after being rudely awakened from jet-lagged sleep. I was a child. And I had to lean against a pillar, to sleep while pretending to be awake. Hollywood Boulevard be damned. Couldn't you have liked one where I looked cute?

I cringe with embarrassment when I recall how you would interrogate every boy I introduced you too. No question was too personal. No relationship left undiscovered.

I thank you for the wonder of travel. Every home-country trip, we saw different countries and experienced different cultures. History came alive. Geography showed her beauty. I think I have little wings, invisible wings, under my feet, like you had.

Oh! how many times this wonder of travel worried me! Even in your 80s, you and Amma would disappear on a trip and not tell me. I had to track you down like a detective.

I am amused that though you have flown around the world many, many times, you are still nervous to fly. As children, we liked making you shiver with fear, when we loudly wished for the adventure of being hijacked! Sorry.

I appreciate that you made my dark colored skin inconsequential. Specially in a family of fair people. To you, I was pretty. A "pretty" that meant practical, intelligent, confident, logical, respected.

I cry now to see you helpless and so dependent on people. And I lie when I tell you it doesn’t matter. It does. And it hurts. Physically hurts.

This is what Anna looks like
 after eating a jalebi :-)

I feel guilty and I wonder if I am a bad child, a cruel child, when I wish that your life would end, peacefully and quickly. I think 10 years of suffering is enough. And these three years have taken the mickey out of both of us.

I love the way your face lights up with a toothless smile when I ask you if you want to eat ice cream, or jalebi, or mysore pak. I sometimes ask you this, just to see you smile. A smile that is infectious and makes me want to skip like a little child.

I don’t know how to end this letter other than to say that I both dread and look forward to every day with you. 

First published in The Quint, 16 June 2017

The Importance of Our National Anthem

April 2016: Anna could pick up
a ceramic cup full of coffee and
open the lid of a water bottle.
Now, most days, he can't. 

A few weeks ago, I walked into Anna's house to find a sleepy Anna sitting at the dining table, a hot cup of coffee in front of him, his hands trapped under the table (nowadays, Anna can't seem to work out how to move his hands sideways and up from under the table).

Me: Anna, do you want to drink your coffee?

Anna gives a slight nod of his head.

Me (helping him move his hands sideways and up): Anna, can you hold the cup to drink your coffee?

There is another slight nod but no move to hold the coffee cup.

I bend the index finger of his right hand and curl it around the handle of the cup. That physical cue is enough for the rest of his hand to curl. He lifts the cup. The cup rises a couple of centimeters off the table and is dangerously tilted. He has little strength in his wrist and hand. 

Me (moving his left hand to hold the side opposite the handle): Anna, lift the cup with both your hands.

Anna tries but can't. The alternative is for me to lift the cup to his lips to let him sip his coffee. I've got to be really careful, as the coffee is hot and if I tilt the cup too much, he could burn his lips.

I ask the attendant, Sudama, if Anna had a comfortable night. Sudama tells me that Anna was fine till about 2 am in the  morning. Then he suddenly turned on this back, straightened his legs and spine (almost lying in attention) and sang the Indian National Anthem. Really! The whole national anthem!

Sudama tells me that Anna sang the anthem well. The words were all correct and the tune perfect. I find that hard to believe. Anna is tone-deaf. His Hindi is passable (i.e. it's just about good enough for him to have passed the Government mandated Hindi exam for Central Government jobs in the '50s / '60s).

Over the next week I try to find out what Anna was dreaming of when he sang the National Anthem in the middle of the night. Anna does not recall anything. There is not even a glimmer of a memory. So I try to ferret it out over multiple conversations.

Me: Anna, did you remember the National Anthem from when you sang it?

Anna does not respond.

Me: Anna, did you sing the National Anthem in school?

Anna: Yes.

Really? It can't possibly be. Anna was born in 1928. At Independence in 1947, he would have been 19 years old. From what I remember the anthem was adopted in 1950 when Anna was in college.

Me: Anna, did you sing the anthem in college and not when you were in school?

Anna: Yes.

Me: Anna, we had assembly only in school and not when were in college.

There is no reaction from Anna.

Me: Maybe we should have had assembly in college, Anna.

Still no reaction.

Me: (deciding to go back to familiar territory that had him talking): Anna, didn't you say prayers at assembly? We all said prayers at school assembly. We didn't sing the National Anthem.

Anna: As soon as the National Anthem was declared, we sang the anthem instead of prayers.

Me (surprised): Really Anna? We didn't sing the anthem instead of prayers when we were in school.

Anna: You should have.

Me: Why Anna?

Anna: Because the National Anthem is more important than prayers.

For The Benefit of Medical Science

I return from the Jaipur Literature Festival on a real high. The sessions were great. My love for books and reading has been rekindled. And I have relaxed with college mates.

I am away for just 4 days. I go to see Anna on the 24th morning at breakfast time. Anna is sitting at the dining table as I walk in.

Me: I'm baackkk!

Anna is so focused on his upma that he does not hear me.

Me: Anna, I'm back from Jaipur.

Anna (giving me a sideways upward glance): Yes.

Me (obviously expecting more excitement): Anna, did you miss me?

Anna: You've been gone for 2 weeks!

Me (in a conciliatory voice): Anna, I've been gone for 4 days!

He doesn't really believe me. In his reality, it has really been 2 weeks.

Photo Courtesy: The Times Of India

10 days go by with Anna in a daze or sleeping most of the time. The constant rain on 26th January does not help. He is cold and stiff. One evening when I go to see him, he can barely shuffle his way to the sofa from his bedroom and has to be carried by the attendant and housekeeper.

Me: Anna, you are very tired today?

Anna: Yes.

Me: Why are you so tired today, Anna?

Anna: There is a lot of work to do.

Me: What work Anna?

Anna: The entire area needs to be sanitized.

Me (confused): Sanitized? Oh, OK.

Anna: And my clothes need to be burnt.

Me (huh?): OoKayy !?

I am wondering what is happening. What is Anna thinking about? I keep asking questions and I keep hearing about sanitization and the burning of clothes. Then.....

Anna: The cadaver can't be used now.

Me: What cadaver Anna?
I think that he is hallucinating about dead people. It's happened before and I know how to play along.

Anna: My cadaver.

Yikes! Anna thinks he is dead.

Me (deciding not to dwell on his being dead but on the use of the cadaver): Why is the cadaver of no use, Anna?

Anna: Because I am too old.

Me: Anna, medical science can use a body of an elderly person to study the impact of ageing and age related diseases. Not knowing more on the subject I feebly add - And many more things.

Anna (perking up a little): Really?

Me: Really! Pause. Anna, you always wanted to donate your body and organs to medical science. You have it on your Do Not Resuscitate Order questionnaire.

Anna: Yes. For the benefit of Medical Science. Pause. But my old organs are of no use now.

Me (waxing eloquently on a subject that I don't know much about) : Anna, I am sure they can use skin, and retinas, and veins, and liver, and blood, and marrow. There are a lot of organs that can be harvested.

Anna believes me.

Now I've gotta go out and really study the area of organ and body donation. Got some names and numbers at AIIMS. Internet searches and doctors, here I come!

Crossing Something Off My Bucket List

One would expect that I would be super excited about doing something on my bucket list. Of course! But with that excitement comes worry. Before I talk about worrying, let's talk about what I am going to tick off my bucket list.

For years, I have wanted to attend the Jaipur Literature Festival. And for years I haven't. I haven't because of the same dreary reasons we use all the time - "I can't take time off from work", "I don't want to go alone", "I forgot to register", "I haven't booked a place to stay". And as a caregiver, there is the additional excuse of "Who will look after my father?"

Most primary caregivers (including me) will tell you that being a caregiver often leaves us feeling that our lives have come to a stop. There is only care-giving.  Our minds are more than just occupied, they are packed to the brim and overflowing. Overflowing with thoughts of medicine, therapies, patient daily activities, nutrition, entertainment, emotional support, dealing with emergencies & demands. We live in a world of "what-ifs" & "Oh hell". It feels like slowly drowning in quicksand.

It took me a long time to overcome what I call "the caregiver's Chakravyūha" (a multi-tier defensive formation that looks like a blooming lotus or disc when viewed from above. The warriors at each interleaving position would be in an increasingly tough position to fight.). We war with "I have so much to do to be a (perfect) caregiver" and "there is no time to do all that I need to do" adding "I need to also ensure that other commitments don't fall thru' the cracks" and wanting to do something purely for myself, by myself. And that causes guilt. When it shouldn't.

It took me time to break out of this unending spiral-trap Chakravyūha. I did, and so I am off to the Lit Fest with college-mates (Santana and Aradhana). Whoopee!! I am so excited.

I decide to tell Anna that I will be gone for 5 days.

Me: Anna, I am going to Jaipur.

Anna: Why? Do you have work there?

Me (for a split second I think of saying "yes" but don't) : No Anna. I am going to the Jaipur Literary Fest.

Anna: Why?

A simple question needed a simple answer.

Me: Because I like books. I like reading. I write.

Then there is a long pause. I expect that Anna, as usual, will ask me who will look after him. He doesn't.

Anna had a grey leather duffle bag like this one. His "last minute bag".

Anna: Sangeeta, I need a "last minute bag". Anna has always called cabin baggage as "last minute bag".

Me: Anna, you are not going anywhere. Why do you need a "last minute bag"?

Anna: I should have one. What if we have to travel?

Me: Anna, you need a "last minute bag" if you are travelling. You are not. I am.

Anna (still thinking he is going to travel): I need a place to keep my things.

Me: What do you want to keep in the bag Anna?

Anna: Lots of things. Pause.  My toothbrush & toothpaste. Shaving kit. A change of clothes. My pajamas. Bedroom chappals. 

Me: And a towel.

Anna: And a towel. And emergency medication.

He remembers everything that he used to pack. And forgets that he thought that he was travelling with me!

So, I am off. Sanjiv, my husband, is going to hold fort. 

I am not going to worry. I am not going to feel guilty. I am going to enjoy myself to the hilt. Just the anticipation gives me a high.

Jaipur ......... Brace yourself!

You are Schtopal

Anna, all bundled up

My father is definitely slowing down. Earlier he could shuffle-walk to the big park behind his apartment. Now he barely gets to the gate of the colony. Previously we had more hours of wakeful cogent conversations. Now when I do have cogent conversations that last for 30 mins, I call it a good day.

As usual, last Sunday morning I decided to take Anna out for coffee. He was waiting patiently, sitting at the dining table for me at 11am, our usual hour.

Me: Anna, are you ready to go out for coffee?

Anna: Yes.

Me: Anna, where do you want to go? To Starbucks in the mall or to the Barista where we sat outside with Mamta and the family last weekend?

Barista at SDA Market

Anna: Say again!

Me: Anna, do you want to go to the mall or sit outside and drink coffee?

Anna: Outside.

I check that he is warmly clothed (something I check each day!), focusing on number of layers vs thickness of woolens. He says he is feeling quite warm. And off we go!

At Barista, he shuffles to a table outside the cafe, waits patiently for his coffee and treat. Today we have a double treat - coffee with Irish Cream flavoring and a paneer, corn, & cheese turnover. We chat about mundane things. And about his illness and the restrictions it places on him. It's like a "repeat it" game. He asks me to repeat questions and responses and I do.

Begumpur / Vijay Mandal Park
Photo Courtesey: http://so.city

After coffee and a paneer, corn, cheese turnover I ask him if he would like to go to the "really big park". He says yes, and we drive to it. That is the easy part. Getting him thru' chained gates, walking down an incline and wheeling his wheelchair on rough red sand takes effort. But, what the heck, he loves the 3 km "walk" in the park.

On our way home, here is how our conversation goes:

Anna: Sangeeta, you are great!

Me: Really? What did I do?

Anna: You are great!

Me: Thanks Anna. But you have to say that! You are my father.

Anna: No, I don't have to say that.

Me: Fathers always think their children are great.

This goes on for a while. Then Anna changes tack.

Anna: You are very patient. 

Me: Yes Anna, I am.

Anna: You have listened and replied to all my questions and comments today.

Pause.

Anna: You are schtopal.

Me: Schtopal? What does that mean, Anna?

Anna: I don't know. But it says what I mean.

I have no clue what he wants to say. I think of all the possible words in Tamil, Kannada, Hindi, and English that "schtopal" sounds like, but for the life of me I cannot come up with a single word or phrase. I even google it with no luck. Yet Anna is clear that it describes what he wants to say.

Perhaps Anna's Parkinson's and Dementia brain is creating a new language!