Thursday, March 31, 2016

Saying The Darndest Things!

Photo Courtesy\news\health-19989167

I have had the "I want to die" conversation with my father a number of times. A conversation he initiates. A conversation in which he tells me that he just wants to end the degeneration that Parkinson's Disease, Dementia and Diplopia have wrecked on him. Where he laments the loss of independence and mobility. On his quality of life. On the impact it has on me as his primary caregiver.

 I don't know what brings this on, but, I have often been confronted by "Sangeeta, I want to die" or "Sangeeta, why am I still living" or some such refrain.

The first few times I heard this, I deflected. It is easier to change the topic than to have a conversation on death. I deflect with "Anna, you are doing fine" or some such rhetorical comment.

From deflection, I moved to trying to find out what brought this on. I can well understand that a person with my father's diseases and limitations gets depressed and that depression leads to thoughts of dying. Of ending it all. So I run thru my mind all the reasons that could have brought on the depression - the medication, or a physical illness, or not speaking with relatives for a long time, or being cooped up at home, or boredom. And then I address what I feel is the key driver of the depression in the best way possible.

From deflection to "what brought this on?", I move to asking Anna, "Why do you want to die?" or "Why are you thinking of death?" When his response to this question is specific, it is easy to address. But when it is not, I have to use logic and a process of elimination to determine the cause, and then address that cause.

Here is how one of the conversations went:

Distress by Moshfegh Rakhsha
Me: Anna, how are you?
Anna: I want to die.

Me: Anna, why do you want to die?
Anna: Because I want to.

Me: Anna, death is not in our hands. There is nothing you or I can do to hasten dying.
Anna: Why not?

Me (wondering how to answer): Anna, you die when your heart stops beating. Your heart is strong, so that's not going to happen soon.
Anna: Why can't you get me a gun?

Oh dear! How do I respond to this?

Me (falling back on logic, my safety net): Anna, buying a gun in India is not easy. I wouldn't know how to buy one.
Anna: You can find out anything on the internet. Buy a gun and shoot me.

This conversation is deteriorating by the second.

Me: Anna, I can't shoot you!
Anna (looking and sounding petulant): Why not? I don't want to be a burden on you.

Me: Anna, you are not a burden on me!
Anna: Yes. I am!  I can’t do anything for myself. I am useless. Pause. Buy me a gun then.

Oh dear! Oh dear me!

Me (holding on to the logic-lifebelt in a stormy sea!): Anna, even if I bought you a gun, I can't shoot you.
Anna: Why?

Me (thinking "what the hell?!!"): Because, you are my father. I can't kill you!! I can’t kill anyone, for that matter!

Anna: But I want to die. Get a gun and shoot me.
Me (exasperated): Anna, I can not and will not buy a gun. If I shoot you, I will go to jail for the rest of my life.

This flummoxes him.

Anna: OK. Buy a gun and give it to me. I will shoot myself.
Me: Anna, you are being silly!  I pause as I think fast on my feet. Even if I could buy you a gun, you wouldn't be able to pull the trigger with your Parkinson’s.

This stops him in his tracks.

Phew! What a relief.

I then change the topic to walking, or food, or physio, or politics, or something that is safe ground. And coax him to do some activity. And I chatter away like a child about anything but death.

As I leave his house, I feel washed out! The clothes I am wearing have faded. The street and sounds and lights have receded into the background. 

I have been thru' an emotional wringer and come out the other end still standing on my feet. 

This time.

Wednesday, March 23, 2016

ICC World T20 Cricket and Lord Wavell

India vs Pakistan T20 World Cup Match
Photo Courtesy
On Saturday evening, in addition to chatting about the awesome weather (rain in March!), I ask Anna if he would like to watch the India vs Pakistan T20 World Cup match. I hope watching the match will break the cycle of lethargy and depression. It doesn't.

Anna has never been a big cricket fan.  He is probably a part of the 1% of Indians who are not cricket crazy. However, I was banking on the legendary rivalry between the 2 teams on the cricket field to snap him out of his current state. He is not even remotely interested! He decides to nap before dinner instead.

A Bomb Ladi
Photo Courtesy
India, of course, wins the match and the city resounds with the sound of crackers in the middle of the night. I worry that Anna will be woken by the sound of bomb ladis. That his sleep will be disturbed. That he will call me in fright. Nothing happens and the rest of the night passes peacefully.

I tell him on Sunday that India won! Still no interest. Then I remember a story about my mother and cricket. Actually, about my mother who watched Sunil Gavaskar's famous test début in Port-of-Spain in 1971.

Anna was working for the UNDP in Trinidad & Tobago. The West Indies had, and probably still has, a vibrant Indian-descent population that embraces and celebrates all things Indian, including Indian ex-pats. So, when the Indian team came to play against the West Indians in Port-of-Spain, Anna got tickets for my mother and himself, to watch the match at Queen's Park Oval.

Photo Courtesy New Arya Bhavan

Amma and Anna spent the first three days watching the match at the Oval, from start to finish.  On the fourth day, the rest day, some members of the cricket team came home for breakfast at 7 am. Amma made idli, sambar, chutneypudi, ghee and of course, coffee.  The table groaned with food, and there was not a quiet place in the house. The little kids (like me and my sister) watched as Gundappa Vishwanath devoured more idlis than we had ever seen anyone eat before. S Venkataraghavan played chess with my brother. Sadly, Sunil Gavaskar didn't come to breakfast that morning. I think that 7 am breakfast went on till noon with many rounds of coffee and home-made ompudi.

Sunil Gavaskar is garlanded at the end of the Test Match
 against the West Indies at Port of Spain
Photo Courtesy
The following day found Amma and Anna back at Queen's Park Oval watching the match.

After the match ended, Anna asked Amma how she liked watching a test match. India had won and Sunil Gavaskar was a sublime batsman.  Amma was non-committal at first.  Then she said, "I don't understand this game. A man at one end, throws a ball over his head at another man at the opposite end, who swings a bat in the air. And they do this for 5 / 6 days at a stretch! Isn't there something better they could be doing?" Amma clearly did not understand the game of cricket!!

Anna smiles as I recall this story.  He tells me that Amma never went to see another live match even tho' there were plenty of opportunities. She found cricket boring. Then he tells me that Amma echoed the sentiments of Lord Wavell.

Printed in The Canberra Times on 27 October 1947
Photo Courtesy
"Who Lord Wavell?", I ask.  "What did he say?"

Anna tells me, "Lord Wavell created a huge controversy in the late 40s when he said that cricket was wasted time and effort."

I respond with, "Really?" hoping to get him to talk more. He obliges.

"Yes", he says. "Lord Wavell said it was the height of absurdity that 22 men could spend 5 / 6 days playing a game, and that too for months on end. And that the British had created the sport merely to provide a spectacle for large crowds of people, wasting a colossal amount of time, money, and manpower."

Insightful, that Lord Wavell chap, I think to myself.

Little did Lord Wavell know the spectacle the game of cricket would turn into! 

Saturday, March 12, 2016

There'd Be No Butterflies If Nothing Ever Changed

It’s been four weeks of dealing with Anna being disoriented more than usual, and quieter. Just not being "all there" most of the time.

I was kind-of getting used to being disconcerted when I meet him. And suddenly, things have changed. How did that happen?

It started at noon on Monday. A panicked attendant calls to tell me that Anna had suddenly become loose-limbed and nearly fainted on his walk back from the park.  Two times, to boot!  Murphy's Law demands that I not be at home when there is an emergency and hence I am ensconced in an office in Noida, working.

I call Sanjiv, who has just returned from taking his father to the doctor, and tell him to rush over and take Anna to the hospital.  I believe that Anna's loose motions have weakened him and caused his fainting-like symptoms. I am also pretty sure that physical illness exacerbated his mental acuity.

Courtesy The Telegraph

Me (after I explain the fainting-like episodes): You need to take Anna to Neptune.
Sanjiv: OK.
Neptune is the name of the small hospital with great doctors that we go to.

Me: Take the red sling bag - it has all his medical papers. 
Sanjiv: OK.

Me: The orange cloth sling bag has a change of clothes for a hospital stay, if needed. Take that too.
Sanjiv: OK.

Me: Take the plastic zip bag with all his pillboxes and  emergency medication. The sheet with his pills' administration schedule is in a pocket in the bag.
Sanjiv: OK.

The poor man isn't able to get more than a word in while I continue to give instructions!

Me (not missing a beat): Take the schedule register that logs his daily routine. 
Sanjiv: OK.

Me: Call me when you know what the doctor says.
Sanjiv: OK.

And, I put down the phone. I look up and notice people looking at me strangely.  "Aren't you rushing home?", I am asked. 

No. I take a call not to. I have it all organized. The bags, the register, the reliable doctors at a nearby hospital.  Not to miss out Sanjiv, who is conveniently at home.

We find out that Anna has a stomach infection that we treat with antibiotics. He is also prescribed lots of liquids and no food from outside.

At 6:30 am on Thursday morning, I ring Anna's doorbell with my characteristic quick double-beat. I ask the night attendant if Anna is OK. He responds with, "He is fully awake. He heard your signature bell-ring, and his eyes flew open!"

Me (leaning over his bed side rail): Hi, Anna.
Anna (with a wide beautiful smile): Bandya, amma.  
Loosely translated that means, "So you've come." 

Me: Anna, are you ready to get up?
Anna (with alacrity): Yes. 
He attempts to get up, and I give him a friendly push to help him sit up.

Me: Anna, do you want to have coffee?
Anna: Why else would I get up in the morning? 
Hrrm! Why indeed!

Me: Anna, do your joint loosening exercises. 
I show him the finger contraction and release movements. The wrist rolling movements. The arm bending motions.
Anna (doing some of these, for show only!): Joints need lubrication from coffee, amma!
Jules Destrooper Butter Crisps

I laugh. He's back! Witty at 6:30am in the morning.

We sit in the rear courtyard and chat while he eats half a waffle crisp with his one-third-cup of coffee. With his second one-third-cup of coffee, I ask him if he wants the other half of the waffle crisp. Selflessly he offers it to me saying, "You have it, amma."  I say "no" and we decide to keep it for a snack later in the day.

He watches an airplane fly by and tells me stories of his brother, Krishna, throwing stones at planes claiming to hit them, and getting responses from pilots!

Then he is ready for his after-coffee before-breakfast nap.

 I come back home feeling good. As light as airy warm soufflé. 

Goats Cheese Soufflé

On Friday morning we spend 3 hours in hospital!
The circle continues.... 

Friday, March 4, 2016

Dealing with Distress

It’s been a crazy 3 weeks. It’s been weird..... hmm..... no odd....... no…... I think it has been more disconcerting than anything else.

Anna has been more “out-of-sorts” than "present". In an hour-long conversation, he can be disoriented, lucid, witty, depressed, and worried. Responding to him takes the mickey out of me. I feel like I have been thru’ a wringer.  Here is an example.

Distress by Moshfegh Rakhsha
Yesterday evening, I wait at the dining table for Anna to come out of his room. He walks out and when I look up, my heart sinks. He is frowning and looking very troubled.

Me (concerned): “Anna, what’s the matter?”

He looks at me but does not see me.

Me (raising my voice): “Anna?!”

Now I can see his eyes focus, there is a glimmer of recognition.

Me: “Anna, what’s the matter?”

Anna (very distressed): “We have to go to the hospital immediately!”

Me (wondering if he is feeling really unwell): “What happened? Did you have another loose motion?”

Anna (his voice goes up a notch in distress): “Mamta has broken her foot and we have to go to the hospital.”

Mamta is my younger sister who lives in Bethesda.

Me (worried ‘coz I think that something has really happened to Mamta): “Anna how do you know that Mamta has broken her foot? Did she call you?”

Anna: “No. Vikram told me.”

Vikram is my brother who lives in Westboro. Now I am really worried. It’s got to be serious if Vikram called to tell Anna.

Me: “Vikram called to tell you that Mamta has broken her foot? When?”

Anna: “Vikram told me just now. A few minutes ago.”

Anna (looking around for Vikram): “We have to go to the hospital right now. Has the car come?”

It now dawns on me that Anna may be imagining this entire exchange. I am not sure. His distress is real. Tho’ my brother is not in the house, Vikram could have called Anna. I am more than a little frazzled, and don’t realise that Vikram would call me if there was something serious vs call Anna.

I check with the attendant if Anna has had any calls from Vikram or Mamta. He tells me that Anna has not. So now I know what to do. Calm him down without contradicting him.

Me: “Anna, Mamta is in Abidjan, Cote d'Ivoire. The Ivory Coast. In Africa. 

Anna looks at me with an expression that says, “What’s that got to do with her breaking her foot, dummy?”

Me: “Anna, you are in Sheikh Sarai. In Delhi.”

Anna’s expression does not change.

Me: “Anna, we can’t go to a hospital in Abidjan. It’s in Ivory Coast. In Africa. We are in India”

I have to go thru’ this sequence of comments a couple of times till he says “Ivory Coast and India are on two separate continents.” Finally! He gets it!! 

Or so I think.

Anna: “Tell Mamta to go to any Government Hospital.” Pause. “They will treat her.” Pause. “We need to go to the Orthopaedics Department of the Hospital with my CGHS card.”

How old does he think Mamta is? How old does he think he is?

Oh! And tho’ India and Ivory Coast are on two separate continents (a fact he remembers), it has no bearing on his reality where he needs to go to his daughter who has broken her foot.

We spend another 15 minutes, going thru his reality that has Vikram in the flat, delivering the news that Mamta has broken her foot and is in hospital (somewhere where Anna can visit). A hospital to which we need to go to immediately. Post-haste!  That we have to carry his CGHS card so that she gets CGHS benefits.

I finally decide to send Mamta a SKYPE message to call Anna as he thinks that she has broken her foot and is distressed.

Me: “Anna, I have sent Mamta a SKYPE message to call you to tell you that she is fine.”

Anna (his frown is disappearing slowly): “OK.” Pause. “You should also send a message to The World Bank to tell them that she has broken her foot.”

Oh dear me!  Here we go again.

Anna: “Tell them that it could be a broken bone or a torn ligament.”

Me: “Anna, that is a job for the hospital and not The Bank.”

Anna: “You never know with a hospital in Africa. Tell The Bank. They will take care of it.”

I am sure they will, Dad!! Your daughter is a queen!!

But, I decide not to respond on this. And we go thru' this sequence of "tell The World Bank" for another 5 minutes.  

I finally just pretend to type something on my phone, and tell him that I have sent a message to The Bank too.

Then we spend another 10 minutes on what we can do in Africa!

I finally convince him that we should leave The Bank in Africa to do what they should. That we cannot do anything. That I have sent Mamta a SKYPE message to call him. So all he has to do is wait patiently. This calms him. Clearly he has great faith in "The Bank in Africa"!

I hear Sister Francis's voice in my head saying, "You will burn in hell if you lie to you parents!!"  

But that is some time away, I hope.  I need to resolve the current burning issue. One of the things that has helped in the past is to take him out for a walk or a drive. It helps him when he is confused or has delusions or has hallucinations. 

Me: “Anna, do you want to take a walk?”

Anna: “No. Mamta is in the hospital. We can’t go for a walk. She will call.”

Me: “Anna, I have SKYPE on my phone and I will carry it with me. So when she calls, we can take it on the road.”

Finally, Anna says “OK.”

And off we go....

My sister has never broken her foot.