Sunburn and Eosinophilia

The sun shines after days of pollution haze

In the middle of December, suddenly Delhites felt strong sunlight shining in clear blue skies. The terrible pollution haze faded. And the weather got cooler.

It was time for Anna to spend an hour a day soaking in the sun. It's warmth would remove some of the cold from his bones. It's light would ensure the production and absorption of Vitamin D.

Anna's 
sun burned thigh

Within a couple of days, Anna's legs, mid thigh down, were red. Within 12 hours, the redness had spread and there was a little rash and swelling.  I thought it was a sunburn.  The doctor concurred, but suspected more.

A blood test revealed that Anna has eosinophilia. And a sunburn.

Anna finds it funny.

Anna: "It's just a little photo-sensitivity."

Me:  "Yes, Anna. Your skin has become very sensitive with age. You have got sun burnt."

Anna: "We Indians are born with an ISI mark on our skin colour. 'Permanent. Fast colour guaranteed'. So we shouldn't get sunburned."

Really dad?!

Anna's pills

I explain to Anna: "I have added an additional tablet, 3 times a day, to treat your eosinophilia."

Anna responds with: "I already take 2 dozen pills, 3 more won't make a difference!"

Very mature and stoic, you think.  

I am now preparing for the days when Anna will count the pills he takes. 

He will recognize that there are more pills than the number he remembers. He will either refuse to take his medication or call me in panic fearing that he is being over medicated.

I will have to explain the sunburn and eosinophilia to him again. And I will smile as I tell him that the ISI mark "Permanent. Fast colour guaranteed" does not work.

The Only Thing I Have Achieved Is To Make You Miserable

Patiently waiting
for breakfast
on a normal day

Anna's still has the throat infection that started just before Diwali. The doctor decided not to give him any medication and advised steam inhalation 2-3 times a day.  We have been doing this religiously.

Then one morning, around 9:30am, I get a desperate call from his attendant saying that Anna is refusing to eat breakfast and have his medication.

I run to his place to find Anna sitting stubbornly away from the dining table. He, like an ostrich with its head in the sand, has his eyes closed, thinking that if he can not see us we are not there.

Me: Anna? What's the problem? Why are you not eating breakfast?   Pause.

Anna: I don't want to eat breakfast.

Me: Anna, you need to eat breakfast so that you can have your medication.   Pause.

Anna: I don't want to have medication.

Pills and Pill Boxes

Having been thru' this conversation chain many times before, I try what has been successful before.

Me: Anna, if you don't want to take all the pills, I can take out just the Carbidopa-Levodopa for you.

Normally this works, as Anna knows that he has to have his critical Parkinson's medication, without which he stiffens up and can not walk. However, this time I get no response much less an affirmative one. He continues to sit like the Buddha.

Me: Anna, you do need to have your Syndopa Plus (the brand name of the Carbidopa-Levodopa formula he uses).

Anna: I don't want to.

Me: Anna you know that having Syndopa is critical. You have to eat something before taking it.

Anna: I've had coffee.

Me: Anna, that was at 7am! You have to have something more substantial.

Then there is a long break. We are at impasse. He won't eat, and I don't know what to say or do.

And then Anna says: If I don't eat and have medicine, I can die faster.

Oh boy! Now what do I do?
I decide to ignore this statement, and talk about food.

Me (trying to tempt him): Anna, shall I make uppitu (upma) for breakfast?

Anna: No. I don't want breakfast.

Anna's jar of Nutella

I run down all the options and get a simple "No" to all of them. No poha. No daliya. No omlette and toast. No dry fruits and oats. No cornflakes and fruit. No sooji. No to everything.

If I wasn't worried and frustrated, I'd be angry at this childishness!!

Then I ask, Anna, will you have a slice of toast with something? Peanut butter? Jam? Chocolate spread?

I hit pay dirt. His eyes open. He looks at me. He says Chocolate spread.

Before he can change his mind, we move him to the dining table, and quickly put Nutella on hot toast. He eats it with glee. After he finishes it, he licks his sticky chocolate-peppered fingers.  And then has his medication.

Me: Anna, will you now have a nap?

Anna: Yes.

Pause.  Long Pause as he slow walks / shuffles to sit on his bed.

Anna: Sangeeta, so all I achieved was to make you miserable.

Yes dad. You did.

And I know you are going to do it again.....

Saving Sethumadhavarao

Thoughts of water and its dangers continue to be top of mind for Anna after the terrible Chennai rains.

But instead of hallucinations, he tells me the story of how he and his brothers saved his 50 year-old maternal uncle, Sethumadhavarao, from drowning in the Bhavani river. Sethumadhavarao was a pigeon-toed, six-fingered teacher who was considered by the family as a prime candidate for diabetes, as his small frame carried over 200 lbs of weight. Most of it on his paunch and bottom.

Map data (c) 2015 Google

At the time of this incident, in 1948, Sethumadhavarao, was living in Jalakandapuram, a town in Salem District, Tamil Nadu. Jalakandapuram was, and by all accounts still is, a small town (population <20,000 people), with no water bodies - no river or lake.  Even the 60 feet-deep wells had only a few inches of water.

Bhavani River, Indianetzone.com

Anna's family lived ~40 kilometers away from Jalakandapuram, in Kumarapalayam, Bhavani's twin town.  The 2 towns are separated by the great Bhavani river.

So when Sethumadhavarao visited his favorite younger sister, my grandmother Ananthalakshmi, the three brothers, Cheenu, Padu, and Krishna were charged with looking after him.

The three brothers who had all learned to swim in the Bhavani River thought that it would be a treat to take their water-deprived uncle for a swim. On seeing the great Bhavani river, in full flow, Anna says that Sethumadavarao went "ga-ga".

Cheenu, Padu, and Krishna took Sethumadhavarao to a place at the confluence of the Bhavani, Kaveri, and the invisible Amritha rivers.  At this spot was a 20 foot, 45-degree, natural rock slide into 2 feet of water. A calm, safe place for their uncle to take a dip.

Sethumadhavarao was convinced by three teenage boys that he was in safe hands.  So he stripped down into his kachhae and slid down the decline. Fast, very fast! Propelled by gravity and his not-so-light weight. Unfortunately, instead of sliding down on his ample nether region, Sethumadhavarao, slid down the incline head first, on his paunch!!

As his head went under water, he started to flail his arms, twisting his head, trying to keep his nose out of water. But weight and gravity will have their way and he continued to slide further in. In a couple of seconds, he is holding his body in a pushup position, arms on the rock under him, back arched, head above water. And he is panicking. Screaming that he does not want to die, that he is too young to die at 50. He invokes every God he can think of, pleading to be saved.

The brothers realize the danger and jump down the incline, bent on saving their uncle.  Fearing the wrath of their mother more than the death of their uncle.

Krishna, grabs Sethumadhavarao's legs and tries to pull him back up the incline. Padu, stands astride his uncle's more than ample frame and pushes at his hip and bottom.  Cheenu holds his shoulders and adds his strength to push Sethumadhavarao up the 45-degee incline, while he is still lying on his stomach.

It takes them buckets of sweat, torn muscles, and 30 mins to get 200 lbs of flailing dead weight to the top of the incline.

For the next 20 minutes they sit together, bound by sweat, fear and water, trying to catch their breath. And worrying about what their uncle is going to tell their mother. The brothers are sure Ajji will either kill them or throw them out of the house for endangering her beloved brother. All the while, Sethumadhavarao keeps repeating how he has "gone to the other world and come back".

When they get home, Sethumadhavarao has recovered completely from the ordeal. When Ajji asks him about his visit to the "great water way", all he says is that she has real gems as sons!

And our three heroes get to live another day!  

Hallucinating on Chennai Rains

A township passes us by
Venice, Sept 2008

For the last few days Anna has been hallucinating about being on a boat / yacht / ship. His questions and comments range from, "This ship is well decorated" to "I want to go on deck" to "I have never been on a ship". And tho' I keep reminding him that he is at home and in Delhi (miles away from the sea) I haven't been able to stop the hallucination, tho' he does break out of it for brief periods of time.

Photo courtesy Madras Crocodile Bank

Yesterday, on his evening walk, I tell him that there is a rumor that 40 crocodiles escaped the Chennai Crocodile Park and are swimming the streets of Chennai. He finds this interesting and funny, focusing on the escape and not the fact that it is a rumor. I then tease him that he needs to walk more, to build up strength and stamina, so that we can send Cheenu, the famous Tamil crocodile tamer to catch them. He lets out a loud laugh!!

Smooth Sailing, Kronborg Castle, Helsingor
August 2009

This morning, we are again on a well managed and turned-out yacht.

Anna: This ship is well decorated.

Me: Anna, where do you think you are?

Anna: On a yacht.  I have never been on a yacht.

Me: Are you feeling unsteady? Is the ground swaying under your feet?

Anna: No. Everything is steady. Technology has advanced so much that I can't feel the yacht move.


Me: Anna, look at the floor.  Can you see the granite chips embedded in cement? Like in all DDA Flats? You are at home in Sheikh Sarai.

Anna: Oh! Pause. I have never been on a ship. I want to travel on a ship. Will you take me?

Me:  Anna, we are in Delhi.  We will have to travel to Bombay or Calcutta or Chennai.

Anna: Aren't we there yet?

And then it hits me!! Ever since the heavy downpour and floods in Chennai, Anna has been hallucinating about being on a boat or a ship or a yacht.

It is that simple.

So till the floods abate and Chennai limps back to normal, I know that Anna is going to be on a yacht or ship or boat.

The hallucination is now so much easier to understand and manage.

Happy Hallucinations Are Also Exhausting

Anna: Is the lagna over? (lagna is the muhurat or auspicious time when a wedding is solomised)

Me: What lagna, Anna?

Anna, looking at me as if I am the dumbest person he knows: <xyz>'s madivay (wedding) lagna!

Me: Anna, it's 2015. <xyz> got married years ago.

Anna: So when do we go to the pandal for madivay oota (wedding feast)?

Anna thinks he has an
invitation card in his hand

I've had this kind of conversation multiple times over the last two weeks. Its always a wedding.  And always that of a first cousin's. Anna wants to know if the wedding is over, if people have gone to partake of the wedding feast, when can he meet the bride and groom to give them his blessings.  All the while pointing to various areas of the flat and talking with or referring to people who are not there.  But Anna sees them, and wants to know why I have not given them coffee, or a piece of fruit, or something to eat.

I have unsuccessfully tried to to snap him out of his hallucination, many times.  I have played along with "Anna, they've already had coffee.  You drink your coffee".  I have asked questions, "What does the bride / groom do? How many people are at the wedding?" I have tried to bring in a sense of time by asking, "When did <XYZ> get married? Anna, what year do you think it is?" I have also told him that there is no pandal, no wedding feast, no guests, no anything. But he is in a world of his own.

From foodandrestaraunt.wordpress.com

Then there are short periods of time when he is in the here-and-now. He will tell me that he is disappointed that he won't get idli dosai for breakfast (realizing that he is not at a wedding, and that he isn't going to have the scrumptious multi-course breakfast that is commonly served after dawn weddings in South India). Or he will ask when his majordomo is coming back from vacation - I haven't told him that Tairas is not coming back, and that I now need to find and train a new person.

So, all-in-all, the last 2 weeks have been exhausting. The bar on the definition of exhaustion seems to be setting itself higher and higher as the days and weeks and months go by.

Anna's infection has abated a bit.  The racking cough and the death rattle breathing are still there tho' they are less frequent. He has stopped sleeping propped up in bed as if he is sitting on a reclining chair. The big treatment plan is steam inhalation 4 times a day, accompanied by various complaints by Anna from "Ayyo! Amma!" to "I am dying (of steam inhalation)". It seems to be the only way to get the phlegm out of his upper respiratory tract. Possibly caused by food and drink going into the lungs and the airways to the lungs instead of the stomach - a common issue with Parkinson's patients.

For the past week, I have also been standing in for Anna's majordomo, washing clothes and dishes, ironing pajamas and bed sheets, cleaning bathrooms and courtyards, pumping water to the tanks and having drains cleaned.

And thru' it all, tho' Anna has been withdrawn and depressed when he is not hallucinating, I am comforted that his hallucinations are about happy occasions, surrounded by family and friends.

But I want them to stop.

It takes a lot of mental acuity to keep up with his hallucinations, even if they are happy hallucinations.

I just want them to stop, even tho' I know that they may be replaced with depression and disorientation.

And, I can't understand why ....... I just want them to stop! 

Diwali, Pollution, and the Uncertainty of Parkinson's Disease

From mildly enthusiastic about Diwali to asking questions about it in less than 3 days! That's how long it took Anna to kind-of get into the groove of things.

At 9:30pm on Sunday night, when he is normally asleep, he calls to tell me that we haven't bought Diwali gifts for the service staff. I assure him that I have already bought gifts.  He asks if it is enough, should we give money, etc.  And we go to & fro on that till he says "Ok-Amma. I leave it to you." Yes, Anna, leave it to me!!

Then on my Monday visit, he wants to know why he has been deprived of Diwali sweets! Deprive him!  Can I even try to dare to deprive him of sweets? No way!! I tell him that Diwali is a couple of days away and that I will buy him mithai soon.

And finally, there are the crackers.  Anna wants us to buy some crackers for "shastra" i.e. as a good omen.  So I go buy some crackers even tho' the pollution levels are high and I don't think we should.  But shastra is shastra.

Then on 9th Nov, Anna has a bad throat, is disoriented, spends all night coughing and doesn't sleep till 5am in the morning. I think it is the effect of the pollution. It gets worse on 10th Nov. He sleeps only at 6am after coughing again all night.  The attendant is worried about the intensity and length of the spells and his ability to breath.


So on Diwali day, we are at the hospital at 9:30 am.

Anna is very mildly responsive, slurring, disoriented, jerking his arms (something he does not do on his Parkinson's medication).

It takes 5 hours to put him on a nebuliser, take a chest x-ray, run blood tests. There is no chest infection, no throat infection, no pneumonia. Yet he is almost catatonic.

We bring him home with instructions to keep a close watch, give him steam inhalations, and to bring him back to the hospital if he takes a turn for the worse.

He sleeps all afternoon.



In the evening when I go to light the diyas at his place, he is half-asleep but still ready to light the diyas and agarbatti. But alas, he is so weak he can not strike the match hard enough against the matchbox to get it to fire up.  So I do that for him.

Eyes closed and with a weak smile he gives the staff, their Diwali gifts. And then promptly falls asleep.

So no real Diwali for him. No gorging on mithai. No watching me light diyas and candles. No being wheeled around the colony to see houses lit up in colorful lights. No enjoying the sight of flower pots and Vishnu chakras as they are lit by his staff and neighbors and he watches in glee.

Belief in God!

I have never really known my father as a religious man.  He has never been one for the ceremonies that surround, and sometimes take over, a religion.  Yes, he would participate in them. More because he was asked to, not because he initiated them.

For ever so long, I have known him to wake up in the morning, sit cross-legged on the bed and pray.  When I have asked, "What is the prayer you say", he had responded with, "I meditate." On my trips to visit him at my sibling's homes, he would light a diya and agarbatti (incense stick) every day after his bath.

So when I brought him to Delhi, I created a small place in his home with a couple of photos and idols, thinking he would want to continue with his prayers or at least with the ritual of lighting an agarbatti and diya. But he didn't. I kept asking him why till one day he told me that he wanted a photo of Thirupati Venkateshwara (our family deity).

Given that I am not a religious person, it took me some time to find a photo for him. He still would not continue with his prayers or lighting a diya and agarbatti.

The Sparkler Exhibit
at Select Citywalk

On this weekend's outing, we talked about Diwali. He loved the decorations, especially the sparkler exhibit. He insisted that I get a snap of him smiling in front of the exhibit!

So I thought it was a good time to see if he would want to go back to praying, or even just lighting a diya and agarbatti every day after his bath.

He patiently watches me as I clean the mandapa and photos, and lay out the diyas and agarbatti stands.  He listens to me intently as I tell his attendants what to do.  And then......

Me:  "Anna, I have set up everything so that you can light a diya and agarbatti after your bath.  Its 10 days to Diwali. You should do this every day.

Anna, with little interest: "OK"

Me: "Anna, why have you lost interest in doing this? You used to be so regular"

Anna, giving me a sideways glance: "What is there to pray for now? Nothing can change. There is no need."

My heart stops.

I don't have the heart to ask him why.

I don't have the heart to tell him that it's OK if he doesn't want to pray.

I don't have the heart to tell him I will put away the mandapa and paraphernalia if he wants.

I don't have the heart to ask him to pray for no suffering and an easy end.

And then, yesterday morning, he lights a diya and agarbatti after his bath.  I think he does it for me. Because I told him to.  Because I put in the effort to set things up for him.

Walking the Wheelchair

The last 6 days has been exhausting for both Anna and me. Anna has had a bad throat and running nose. I have walked multiple times a day to Anna's flat to see how he is doing only to find that he is asleep. I have had to deal with mild disorientation and mild hallucinations.  And, add to this, absconding attendants.

So I am tired.  Tired with the additional work needed; the regular monitoring of temperature, additional medication, following-up on which attendant will come to look after Anna, ensuring he goes out each day for a wheeled-walk, etc.

As Anna was too tired to walk, I insisted that we wheeled him around in his wheelchair for at least 45 mins every evening. Even though he was knocked-out and half asleep most days, whenever I asked him if he wanted to go out, he would say yes. I believe that even when Anna is half-dead, the answer to the question, "Anna, do you want to go out?" will be a resounding, "Yes."

Today was different.  Anna walked from the sofa, and out of the front door himself.  He then pushed his empty wheelchair towards the colony gates.  As he reached the gate, I was pleasantly surprised to see that he was standing straighter, and lifting his knees while walking.

Me:  "Anna, its so good to see that you are walking well today"

Anna: "You know when we were young, your Tatha used to give the three-of-us-brothers homework to do in the evening. Tatha would sit at one end of the hall and the three of us at the other end, doing our homework."

My heart sinks.  The disorientation seems to be back.  I can't for the life of me understand what walking has to do with homework as a young boy (Anna went to boarding school when he was 12, so this story has to refer to a time when he younger and was at home.)

Anna: "Every now and then we would walk the length of the hall, reciting what we were learning."

I still do not know where this is going.

Anna: "As we approached Tatha, the volume of recitation would go up so that he would notice that we were studying diligently."

At this point, I have got to ask, "Anna, does walking remind you of when you were a boy?"

Anna, looking at me and smiling: "Did you notice that the gate watchman was standing with some of his cronies?" Pause. "I wanted them to see that I was able to walk.  That I am not an old man who needs to be in a wheelchair. I had to walk well for them to take notice."

He did not sit on his wheelchair till we were out of sight of the watchman and his cronies!

I kid you not, this 87 year old, wants to show-off!!

Forgetting the Taste of Muffins

9 Oct 2015:  Can you tear up if your father forgets the taste of muffins? 

I can. And I did. 

I teared up because it is someone like Anna who loves all things sweet. Because it is someone like Anna who often says, "If a dish has milk and sugar, it is bound to be tasty".

A few weeks ago, my husband and I finally managed to go on an 8-day vacation (the first time in 4 years), when my sister came to visit with my father.  

In one of my first few conversations with Anna on my return, he told me that he had not been out. So, I decided to take him with me while I completed chores on a Friday morning.  He walked in Aurobindo Place, while I went from shop to shop and quickly ticked things off my to-do list.

Barista at SDA, Opposite IIT Gate, Delhi
Picture from www.zomato.com

When all to-do items were crossed out, I asked, "Anna, do you want to have Badam Milk here or coffee at the Barista opposite IIT gate?"

Anna takes a few minutes to ponder on this very important of choices and decides on.......you got it.......coffee!  Off we go to the Barista.

As we sit down at Barista, I ask Anna what he would like to eat with his coffee.  Again, he thinks for a while and when there is no response, I reel out whats on the menu.  He latches on to "muffin" and then tells me that he would like it warmed up.

A muffin quartered
Picture from www.zomato.com

I get us all coffee, and a warmed muffin. I cut the muffin into 4 pieces and give him two and his attendant one.  Anna bites into a quarter of muffin and says, "This muffin is good. It is sweet."  The phrase does not strike me as odd. He finishes his muffin with glee, forgetting his coffee.

I ask, "Anna, would you like the last piece of muffin?"

Anna, looking at the quarter piece of muffin longingly, "No-amma.  You have it."

I tell him he can have it and it is gleefully gobbled up.

On the way back home, Anna says, "The muffin was good." Then he pauses and adds, "You know I had forgotten what a muffin tastes like?"

I am perplexed. "Really, Anna?"

Anna responds with, "I thought muffins were savory.  Only when I bit into it did I realize that a muffin is sweet."

I tear up.

Forgetting the taste of something sweet, by a man who could find the best place to have coffee and sugary-sweet pastry, in a new city, within a matter of hours, must be unnerving for him.

I often joke that if we air-dropped Anna into the Sahara desert he would be able to smell out a place that serves coffee and cake!  Him forgetting the taste of muffins is ...... a little bit ...... kind-of devastating......

My Father – The Pro-Independence Rioter

I recall Anna once telling me about how he attended a rally where Mahatma Gandhi spoke to a large crowd.  I didn’t remember all the details, so I thought that 2^nd Oct, Gandhi-ji’s birthday, would be a great day to ask him to recall when and how he saw the Mahatma.

It has taken me an entire day, to get the details of the story.  Today, Anna’s memory and speed to respond has been very low, and as I left him this evening, he looked tired and worn out.  Partly, because it was not a “good” day, and partly because I badgered him with questions that taxed his brain.

Anna, 1945-49

When Anna was studying at St Joseph’s college in Tiruchirappalli (Trichy), he and his classmates heard that Mahatma Gandhi would be passing thru Dindigul District.  Also that the villagers of Chinnalappatti were planning to stop the train to seek Gandhi-ji’s blessings. Anna and his classmates decided to travel the ~120kms to Chinnalappatti to get a chance to see the Mahatma and perhaps hear him speak.  It is interesting to note that tho’ my father and his friends did not know Hindi at all, they were willing to travel many kilometers to see and hear the Mahatma. Also, that Chinnalappatti has no railway station, just a railway track, laid on dry brown earth and rock. So pretty much, the middle of nowhere.

Memorial at the spot
where villagers "rioted"
on 2 Feb 1946 

The crowd of over 100,000 people to see and halt the train on which Gandhiji was travelling.  Anna says that as the train ground to a halt there was pin drop silence. Then Gandhiji appeared in the doorway of a carriage, lifted his right hand (as if he was blessing people), and said a few words in Hindi.  Anna and his friends heard every word sitting at the back of the crowd of cross-legged people and understood not one word.

The British called the forced-halting of Gandhiji’s train on 2^nd Feb 1946, a riot.  A large crowd of people, just sat on the tracks forcing the train taking Gandhi-ji to Madurai, to stop. The crowd just wanted Gandhiji’s blessings. The British wanted them gone.  

What surprised Anna and his friends most was Gandhiji’s stature.  They had heard of the big man, the important man, the man people deferred to, the man who went to jail for independence, the man the British were frightened of, the fierce freedom fighter.  And at the carriage doorway stood a frail man in a white dhoti, when they expected a tall, strapping, warrior-like figure.

And then Gandhi-ji and the train were gone.

Later, the place in Dindigul District where the train stopped was named Gandhigram. As of 2001, the population of Gandhigram is listed as 10,666 people.

As I leave Anna, I ask him if he knew that he was considered a rioter by the British and could have been punished or sent to jail.  He gives me a wan smile. 

And then, he tells me that he once lay down, legs stretched out on a bed that Gandhi-ji slept on!

I have so many questions to ask him, but he is tired, and I will leave that story for another day, another telling.

On World Alzheimer’s Day - Take Care of Yourself, Fellow Caregivers!

My father waits patiently
to meet a doctor at Apollo, Delhi.

In India, most children fall into the natural role of becoming caregivers for their elderly parents or parents-in-law.  More often than not, as women tend not to work, the role of care-giving falls on the women of the household, normally a daughter or daughter-in-law.

Whereas looking after any patient can be stressful, research shows us that looking after a patient with Alzheimer’s or Dementia is the most stressful.  It is stressful to manage a parent whose short term memory is bad or completely lost, with a parent who gets frustrated and angry with their inability to remember even basic things, with a parent who seems to be physically OK but mentally not there, a parent who is disoriented, or one who has delusions or hallucinations.

I look after my father who has Parkinson’s disease and Dementia, among other things.  So in addition to all the Dementia related issues, I also need to deal with the physical disability that Parkinson’s causes.  

At a Vyaktitva session on Human Performance Improvement

I worked for over 29 years in corporate India, managing large, globally distributed teams, have survived bloody mergers, acquisitions, divestitures, and it pales in comparison to managing my sick father’s home and health needs.  I finally, gave up working a full time job, and do some consulting, but a major chunk of my time and effort goes into managing my father’s home and health.  And that is more than a full time job.

Even now, when I am asked what I do, my standard, reflex-response is “Nothing”.  And that is a big lie.  I do a hell of a lot of work.  I am just not paid for it.  The work does not have a time slot in a day or week or month. There are no appraisals and no increments.  There are no awards, rewards, and recognition.

I fall asleep, out of sheer exhaustion,
in the middle of a conversation,
at a friend's place 

Unfortunately, with all the activities and mental space that my father’s care takes up, I forgot about myself, the caregiver.  I became, what I thought was, the only person who could take care of him.  The person solely responsible for him, 24 hours a day. Literally, 24 hours a day.  Always on call, even in the middle of the night or the hour before dawn. Even when I was at dinner or at the movies.  I carried my mobile phone to the bathroom.  I spent less time at the parlor.  I can’t remember when I last had a manicure or pedicure or a head massage.  My conversations revolved around my father, what he was doing, what he wanted, etc. and not about me, what I was doing, or thinking or what I wanted.

But caregivers, like me, need to be cared for too!  If you are a caregiver, then let me tell you, NO ONE is going to take care of you.  I have realized that I need to take care of myself too.  I need to demand care for myself and from those around me.  I don’t do this well myself.  It is a struggle.  I am trying. 

So here is my list of care giving that I believe all caregivers need for themselves:

•  Give up the guilt: I don’t know why I feel guilty.  I am doing a lot.  I am doing things to the best of my ability.  My father is happy (so he says).  Yet I feel guilty.  Guilty that I am not doing more, that my father gets depressed, that his health is failing. I have to consciously keep telling myself not to feel guilty.  I have to be realistic about what I really can and can not do.
•  Don’t over-research the disease and prognosis:  This is a tough one.  I need to research my father’s illness so that I can understand and deal with his symptoms.  But the prognosis of his diseases frightens me. I don’t know what I am going to do if and when my father reaches the end-of-life stage.  Can I watch him slowly starve to death, or lose his ability to breathe?   I don’t know.  What I do know is that I don’t want to.
•  Take time off: Find someone - an uncle or aunt, a cousin, a brother or sister and ask them to look after the Alzheimer’s / Dementia patient parent for a couple of weeks at a stretch, and as often as you can get them to give you a break.  And yes, a couple of weeks. A couple of days are not enough.  You need to cut off completely from care-giving responsibilities to really unwind.  Go away in these two weeks.  Don’t call.  Don’t think about the patient.  I have not done this myself till now.  Starting tomorrow, I am going to take time off for 10 days!
• Find or rekindle a hobby:  If you already have a hobby – reading, music, painting, photography, biking or anything that you enjoy, then rekindle your interest.  I used to read 35-45 books in a year.  Since January this year, I have read 1.5 books.  I have lost something I loved to do.  Reading a book and going to different lands, learning new things, having new adventures.  I have lost all that and I recognize I have done this to myself.  Now I am slowly hobbling towards rekindling my hobby of reading.
• Do something artistic: I wanted to write. There were earlier attempts, but they all fizzled out for various reasons. Then I got great advice from my friend Justin, “Write for the pleasure of writing.  If something comes of it, then consider it a bonus.” And I did write. Then I created a blog. Then the blog posts got picked up by people. Then I got commissioned to write articles. WOW, what a feeling it is!
• Learn something new: I want to learn dancing. Perhaps even belly dancing.  I’ve looked for dancing schools nearby but haven’t really found any good ones and have not yet signed up.  What’s holding me back?  Well, wondering if I will be able to keep up with the schedule of dance classes with my consulting work and care-giving responsibilities. 
• Have THE CONVERSATION with the patient parent: This is the conversation on what our parent would want in terms of end-of-life care and/or medical intervention when their illness progresses to a stage where we can no longer take care of them ourselves. I have agonized over this conversation for over a year. The one time that I had a conversation with my father on the medical intervention he is OK with, and with his doctor on what we can do, there was a sense of relief. I have not had the complete conversation.  But I am working my way towards it.
• Laugh a lot.  Laugh out loud.  I find that when I laugh with a friend / family member, or laugh when I read a joke on WhatsApp or Facebook, I feel better.  But there are times when I am out with friends who are all having a good time and laughing, and I feel hollow.  It depresses me. But if I can find something to laugh about, then I laugh, no holds barred. The effect of laughing may last for a few minutes or for a few hours. However long the feeling lasts, it is worth it.
• Exercise: I am personally not great at this.  I walk 6 kms in a little less than an hour, 2-3 times a week.  Nothing great at all.  Not enough, according to most wellness advocate’s advice.  But, it is better than nothing.  And the days I walk, I feel good.  When do I get the time?  In summer, I wake up at 4:45am and hit the park at 5:30am.  What will I do in winter? Well, walk in the early evening, I think.   

This is not a complete list.  And I am not an expert on helping caregivers take care of themselves. I just hope that this post with help start a dialogue between caregivers so that we can help each other.

First published in The Quint on 21 Sept 2015

The Sandal Skirmishes

Anna has a pair of Bata sandals that he guards as if they are two bars of solid gold. I don't know how old they really are.  All I remember is that Anna wore these sandals even before Amma died. That was over 4 years ago. Even then the sandals looked worn out. Now, they are just simply falling apart.

In the beginning of summer this year, I decided that Anna needed a new pair of sandals.  More because I was embarrassed to see his feet ensconced in tattered sandals, than anything else.

Bata Store at DLF Mall, Saket

So on one of our weekend expeditions, we took him to his favorite shoe store. Bata, of course! Here is how the conversation went.

Me: Anna, we are here to look for new sandals for you. Do you see anything you like?

Anna, looking down at his feet, safely resting on the pedals of his wheelchair, covered by tattered leather Bata sandals:  I already have sandals

Me:  Anna, they are old.  You need a new pair.

Anna: I hardly walk.  These sandals are fine for the amount of walking I do.

Me (being as encouraging as I can): Anna, just look around.  Maybe there is something here you will like.

Anna does not move his eyes even a nanometer. So then, I start picking up sandals and pushing them into his hands or just dropping them in his lap.

Me (being sneaky, leveraging Anna's leather technology background, to get him interested): Anna, is this good leather?

Anna succumbs to the lure of leather and starts to examine the sandals in his hand.  And of course, I am told about the quality of the leather, whether the cow / calf was healthy or not, the dyeing process, how the leather was treated etc. Comments that I have heard a hundred times before. Comments that are comfortable to hear, because, I have heard them a hundred times before.

Slowly and surely,over the next 30 mins, we find a pair of sandals he finds comfortable.  Before he can see the price, and ignoring all requests to know the price, I buy the sandals for him.  If I thought that was a victory, I was mistaken.

Me: Anna, would you like to wear your new sandals?  We can leave the old sandals here for the store to throw.

Anna: No!  Lets take them back. I can still use these sandals.

Me: Anna, these sandals are old.  You now have a new pair. Lets throw the old pair away.

Anna: I can still wear the sandals. Then comes the whammy! Just because they are old, does not mean you throw them away!

Little did I know then that it was the beginning of what I now call "The Sandal Skirmishes". Skirmish 1 was won by Anna!

Over the next few months I have tried to get rid of the old sandals and have lost each skirmish.

Skirmish 2:

Me: Anna, lets throw away your old sandals.  They are so tattered, you will get blisters if you wear them

Anna: You get blisters from new sandals and not old ones, Sangeeta

Skirmish 3:

Me: Anna, the new sandals are comfortable, right? Lets give away your old sandals to someone poor who can use them.

Anna: You said they are too old and tattered for me to wear.  How can you give them away for a poor man to wear?

Skirmish 4:

Me: Anna, don't you agree your new sandals look nice? Is it time to throw or give away your old sandals?

Anna: Lets wait a little.  Till then, can you find my other pair of glasses? When you do, I'll think about throwing away the old sandals.

With each skirmish he wins, his grin becomes wider.

He has not worn the old sandals since the day he got his new sandals. The old sandals are kept safely under his bed.  He asks to see them every now and then.  For a man who often forgets the day of the week, or date, or what he had for breakfast / lunch, or whether it is morning or evening, or which city he is in, he sure remembers his leather Bata sandals!!

Perhaps, he and the sandals are linked by memories of years gone by.

Perhaps, it reminds him of a time when life was sickness free.

Perhaps it reminds him of visiting relatives, or walking in markets, or going to weddings / munjis (thread ceremonies) / house-warming poojas with my mother.

Perhaps it is a reminder of days when there was never enough money to buy all the new things we wanted.

Whatever it is, this pair of frayed, battered & tattered Bata sandals, which were the pride and joy of my father's feet, are still loved and cherished, even tho' they are no longer worn.

The Sandal Skirmishes have been won, fairly and squarely, by Anna!

Anna's Thoughts on Income Tax

In the third week of August, I told Anna that, we had filed his income tax returns. At first he was uninterested. But, as I described the new form and the details that need to be filled in this year's new format, he showed some interest.

He then asks, "How does the government expect a person like me to file my income tax returns?"

My immediate response, with no real thought is, "Anna, they expect me to file your returns."

Really?  Could that possibly be true?  Does our IT department expect a child or guardian of an 80+ citizen to file returns on their behalf? I don't know.

I wonder how the super senior citizens of our country, many of then suffering from physical and/or mental limitations, are supposed to file their IT returns? Is there an automatic assumption that the 80+ population will have a child or guardian who will take on this responsibility and file IT returns on their behalf?  Even tho', the super senior citizen, can themselves no longer (mentally or physically) really file or validate their own returns? We need to raise these questions with our CAs (I have).

Anna goes on to say that after a certain age, or given a certain diagnosis of illness, the elderly should be exempt from filing taxes.  Or even paying taxes at all, for they have paid taxes for many years while working.

I think that his brain is working in overdrive mode!

Then Anna asks, "What happens when a person dies?"

Again, I say without thinking, "Then you are supposed to tell the IT department."

He looks at me strangely and says, "How can I tell them when I am dead!"

I laugh it off and say, "A child or guardian is expected to tell the IT Department. So I will inform them for you after you die."

Anna takes 3-4 days to absorb this conversation.  Then out of the blue, one evening he says, "Sangeeta, you are brilliant!"

Smiling, I ask "Why?"

He says, "You have filed the Income Tax Returns of 5 people!"

He is right.  About filing the IT Returns of 5 people, not the brilliant part!

Oscar Wild Sculpture, Merrion Square
Gardens, Dublin, Ireland

Then suddenly he says, "Oscar Wilde was once asked, What is the most detailed & intricate plot you have ever written?"

I wonder why he is changing the topic, and wait to hear more.

After a pause he says "Oscar Wilde responded to this question by saying My Income Tax Returns!!"

I laugh and ask, "Anna, is that true?"

Anna says, with a great deal of confidence, "Yes, of course."

I say, "Anna, no wonder Oscar Wilde was considered brilliant!!"

I come home and look up this Oscar Wilde pearl of wisdom.  I can not find any reference to this quip.



My conclusion is that it is a clever adaptation that sounds like vintage Oscar Wilde.

It is the years of reading, and the inherent Murthi humour being put to good use!!!

Our Parents Need Time Too. Indian Companies, are you Listening?

http://news.bbc.co.uk

I smile as I read the recent news of companies like Microsoft, Netflix and Adobe, instituting inclusive (and what to most Indians will look like very benevolent) leave policies for new parents.  

Unlimited / Generous Paternity Leave Announced

These companies have recognized that there is a need for both parents, male and female, to take time off from work when they have a new baby.  Or adopt one.  Or become a foster parent.  They recognize that to retain highly valued talent, they need to help them tide over the critical 1^st year of a baby by being very generous with the leave that they can avail.  And they have made these policies inclusive by enabling men to take time off when they have a new baby in the family. 

There are of course, Indian companies or subsidiaries of MNCs who have paternity leave that range from a pathetic 2 days to a couple of weeks.  But the companies that are listed above have taken this to another level. 

And this makes me smile.  

Finally, diversity is not all about exclusive programs for women, but inclusive programs (albeit skewed more towards women).  Will this policy attract and retain good people? On the face of it, yes. And please, do give them a chance. I believe that it will work and it is something to celebrate.

Paternity Leave is great.  But what about Elder Care Leave?

July 2015: Anna sleeps in Delhi heat and humidity 

during the 5 hours it took @CGHS 

to apply to transfer his card to Delhi

Then I start thinking about the care of the elderly.  I have often said that looking after an elderly person, and that too one with a degenerative disease, like my father’s, is akin to looking after a child.  

Whereas with a child, parents live with the joy and hope that soon their child will grow and become more independent, there is no such joy and hope for a person who looks after an elderly patient parent/s.  The parent/s will become more frail and dependent till finally death takes them.  A child will live with parents for many, many years but an elderly patient parent will be with us for only a short time.

So why, I ask, have no companies, or governments for that matter thought of instituting “Parent Care Leave”? Leave that I could have availed to look after my father, who has Parkinson’s Disease, Dementia, &amp; Diplopia, vs giving up a full time job.  Leave that I could have used to ensure that I spend quality time with my father vs spending ~4 hours travelling each day to and from Gurgaon.   Leave that I can avail when my father is rushed to hospital and needs care.  Leave that would enable me to manage the financial constraints that not earning puts on a family, especially when I am the only earning member.

Using Parent Care Leave

Since 2011, I have not had a vacation. All my leave days have been used in visiting and caring my father when he was with my siblings and then looking after him when he moved to Delhi in 2014. 

Anna (in yellow) with his younger brother
(KV Krishnamurthy in blue),
Anna's housekeeper &amp; attendant (in green)

In 2014, I brought my father to Delhi to take over care-giving from my siblings. I had to set up a separate, fully functional flat for him.  I was working a full-time job then and had to take PL (privileged leave)and Casual Leave (CL) to fly to Bangalore, pack up and transport his household to Delhi.  Not to mention the many hours after work and two marathon weekends, unpacking and setting up the house.  Hours and days finding him household help, attendants, doctors, therapists, et al. 

I couldn’t relax on a weekend or take a day’s vacation, as I needed the leave to fly him to Delhi, settle him in, and reserve some days for potential hospital stays.  And there were hospital stays, midnight emergencies, hallucinations and delusions that had to be managed on the phone.  All while spending a minimum of 12.5 hours on travel and work.  Not to mention looking after my home and my husband’s elderly parents, who are 91 and 80 respectively.

So, in the end I stopped working.  There was no other choice. There is only so much I could do in a 24-hour day.  And when the choice came down to working or looking after 2 homes and 3 elderly people, I chose care-giving.  It was a no-brainer. 

I thought that I would take a few months off, settle things down and then re-join the workforce.  Wishful thinking, at it’s best!  A new job, meant new commitments, proving myself over again, longer hours, travel, etc.  

Added to this, is the fact that with the elderly there is no predictability.  An upset stomach can send someone to the hospital and time to recover could be 5 times longer than it is for someone in their 50s.  So in the end I decided against a full-time job.  I decided to do something that would give me energy - consulting in areas of interest and coaching organization leaders.   

Tho’ this is my unique challenge, I believe that parent care is going to be a real problem in a few years.  The great “demographic dividend”, that we talk about so proudly today, will become our country’s super senior citizens in 35 years.  Already, nine states in India have lower fertility rates than the highly developed countries of the world i.e. lower than 2.1 which is considered the replacement rate.  Our old age dependency ratio will nearly triple from 13% in 2000 to 32.8% in 2050 i.e. 1 of every 3 working Indians will have to take care of an elderly person by 2050.

While the government is still wrapping its arms around how to get the maximum benefit from the great demographic dividend, I hope they will think of changes to our healthcare and wellness programs to manage a large elderly population. 

But, let’s not leave everything in the hands of a government.  Can some forward-thinking company look at how to retain some of its most experienced people (normally in their 50s), by helping them take time off to look after the same parents who got leave when the child (me &amp; you) were born?

I am asking for the institution of Parent Care Leave. 

That’s not outrageous.  It’s just reality.

First published in The Quint on 14th Aug 2015