19 October 2017

This is the best we have seen him after his brain stroke…

You see my sister looking at dad and laughing her heart out? Well, this has not happened in the last month ever since dad had the medical incident.

To understand what is going on – and remove any doubts that my dad was feeing much better after the walk – first note my mom. I will write about her a little later. But you will notice that she is absolutely exhausted taking care of dad and having to deal with all the visitors (not to forget, she has been a psychiatric patient herself for six years and she is supposed to be sedated most of the day) – and had fallen asleep in her chair as the rest of us were talking.

Let’s go back to why my sister was laughing so much.

My dad – having noticed mom doze off – was imitating how she had slept off in her chair. This, from the guy, who can’t think rationally or speak coherently for more than a few seconds!!!

19 October 2017

Meeting his old friends

Jet lag had gotten the better of me. Plus I had had no sleep last night because of my flight times. Thus, I had inevitably gone off to sleep after lunch having spent some more time with my dad and the nephews.

When I woke up, daylight had started fading. Walked over to dad’s room and saw that he was surrounded by the domestic helps and my mom. I asked him if he would like to go out. He promptly shook his head signaling he had no interest.

Well, a good guess would have been that I would have left matters there. But, we are talking about me here. A few minutes later, I had put him in his wheelchair and in about another minute, I was out pushing him in the streets. Behind me were my brother and my nephews.

First, he kept on admiring the lights. If I had not mentioned before, it was Diwali day. Every house was decorated with colorful lights. Dad just kept saying how beautiful those lights were. What he did not realize was that there was a particular place I was taking him to.

Before long, we had reached the spot where he used to get together with a few other old people when he was stronger and had the ability to walk. I placed him in that off-the-street-corner location and we all stood around him and started chatting.

And then a funny thing happened. An innocuous looking old man who was peacefully shuffling along suddenly looked at my dad and with clear surprise in his voice, yelled – “Roy-babu?” Once he realized that it was my dad, he sat down there too.

And then came along another old gentleman. Slowly there was a small get together of the old folks that started forming there. At one point (you will see my nephew holding a phone to my dad’s ear, one of those elderly person called up another of their old friends and had him talk to my dad!

At that point, my brother mentioned something. It is then that I realized that my father was saying multiple words together. So far, he had been mostly grunting one or at best two words and then everything else would be a slur.

As I tried to follow what they were talking about. I realized that I was still not following dad’s words much!! Actually, I was not following very well the other gentlemen’s words either. Turns out all of them had had brain strokes or heart strokes before (even multiple). All of them have difficulty in speech. But among them, they were chatting along – seemingly effortlessly!

In all this confusion, my sister and niece showed up with some tasty fritters from a street side vendor. We all had some nice snacks standing there and chatting idly.

Eventually, we all left and I took my dad to a few more streets to see the bright lights before going back home.

19 October 2017

Thanks for not spilling the secret!!!

That was quite a surprise sprung on everybody. In fact, most had not noticed me even when I walked in straight to the inside room where my dad was. The two assistants were on the bed holding him up and my mom was feeding him. She had her back towards me – she had no idea I was there. And the two assistants had no clue who I was either. I stood there for a couple of minutes or so when my mom looked back and got the shock of her life!!!

My dad’s condition is pretty much what you would expect from somebody who has had a brain stroke. He was able to recognize me but telling my name was quite an effort. For the next hour or so, I realized that he had lost his ability to lay down or get up by himself (his right side is paralyzed) and quite some of his faculties around memory and speech are gone.

But most painful is his realization that he has lost complete independence. His deep sense of helplessness – even simple things like he inability to express himself – is visibly driving him to tremendous frustration and anger.

I finally remembered something that I had learnt while visiting my friend – Samaresh’s dad. He was totally quiet till I had shown him a picture of his granddaughter in Atlanta in my phone.

As an aside, every December, I make one of those large twelve month Apple calendars – with pictures of Natasha, Nikita, Sharmila, Jay Jay (the dog) and myself (especially of our vacations) from that year and send them to my parents. And my dad, dutifully, puts them on the wall and often asks me about those pictures.

This morning, I brought down all those calendars and then started showing him one picture after another and asked them to recognize the people. Each picture was an effort. Many times he gave up (his choices were restricted to only five names). He missed me most of the time!! Recognized Sharmila, Natasha in all and then after an initial struggle with Nikita’s pictures, started consistently recognizing them.

Took us almost an hour to go thru one calendar!!!

And that was how the first couple of hours with him went…

16 October 2017

“Do Ra Mi”

The phone rang with the familiar tone when I call an India number.
Somebody picked it up and said “Hello”
It was early in the morning. I had to clear my throat and ask gingerly “Mrs. Paulraj?”
“Speaking? Who is this?”

That was a very difficult question to answer. How do you tell the person –

“Well, there is no way in God’s green earth you will know me if I tell you my name. Okay, it is Rajib. Rajib Roy. See? It made no difference. But here is the thing… In 1973, when I was in my first grade in Benachity Junior High School, you taught music to us. You used to sit on a piano and sing songs like Do Ra Me (from Sound of Music ) and, we, the kids, used to join in with a full spirited, high toned bleat. All of us except Mukundan. He was the bully in the class. You never liked him. Neither did we. So, you used to send him out to stand outside the class. If you really insist on crossing the t’s and dotting the i’s, well, he was required to hold his ears too”

What I said was “Ma’m, you were my teacher 44 years back. I was merely 7 years then”.

And to establish my credentials, I quickly rattled off about seven other teachers from that school that I am in touch with. That seemed to gain her confidence. The more updates I gave her about her colleagues from four decades back, the more believable I became to her.

I told her about the drama we did in our second grade. We had to do a play – Cinderella it was. I was one of the princes at the ball dance. (the last time I had danced, as I recollect). My dad had bought me princely clothes for that – bell-bottoms!!! Did I mention this was early 70s? 🙂 I also told Mrs. Paulraj about the time she had pulled me and my partner – Mousumi – aside and taught us how to synchronize our steps to her notes.

In the end, she had given up and told me “Just follow Mousumi’s instructions”. And that is what I had done. If it was not for Mousumi’s eye signals that night, I would have had no idea whether to step left or right. That stage light and all that face powder on me was too confusing!!!

“Ma’m, the reason I am calling you today is to thank you. You were part of a small set of folks who had a big influence on me in my formative years. I just wanted you to know that I am happy in the way I have turned out to be. And I wanted to take the time to say Thank You to you”.

A few heart to heart words later, I am now on to another adventure. Somehow, someday, I hope to see her physically in Salem, Tamil Nadu, India to tell her Thanks to her personally!!

16 October 2017

Another story from my hospice adventures

(All names changed to protect privacy of patients)
A couple of weeks back I had written about the gentleman who would call up his daughter after painstakingly making it to the phone and fishing out the chit of paper from his hat – remember? Remember, how I had talked about the unbridled love a dad has for his daughter?

Well, this is the flip side of the coin. Today, after visiting the same gentleman mentioned above, I went to visit Mrs. Ashley upstairs. I was looking forward to the conversation. To be honest, Mrs. Ashley is a nonagenarian who has been suffering from Parkinson’s from some time. She can’t hear much, she can’t talk much. So, you wonder what conversation am I talking about, right?

Do not get me wrong. I love seeing Mrs. Ashley. Those big eyes – that smile that never leaves her – those nods to anything I say (mostly because she can’t hear a thing) – sometimes, those quiet moments when we watch TV together (I have no idea what I am watching and I suspect that makes two of us) – I absolutely look forward to them. But what I really look forward to is seeing her daughter – Rachel.

If I visit Mrs. Ashley in the afternoon, I am guaranteed to meet Rachel. First, I want you to understand that Rachel is about twenty years older to me. Then I want you to understand that Rachel was hit with cancer. She valiantly fought back that cancer and after five long years, she came up on top of that dratted disease, very recently.

I sit face to face with the lady – a patient, in her own right.

“I am sorry if I am coming into a mother-daughter moment. I will come back tomorrow”, I had said the first day I ran into her.
“Who are you?”
“Oh! I am a volunteer with the hospice service. I came to give your mom company.”
“Well, then you are my friend. Come, sit down.”

From there I started building up the family history…
“Your mom said she is 78. That is how old my dad is!”, I had told her.
“Ha ha, she is 91. She has no idea what she is talking about. Parkinson’s can do that to you”
“Oh!”, I had exclaimed.

As I got to know the history more, I became more and more humbled. Rachel – who is actually my mom’s age – comes and stays with her mom every single afternoon of her life. She helps her with physiotherapy, bathroom stuff and just being there with her.

EVERY. SINGLE. AFTERNOON.

In fact, she and her husband moved to a house next to the hospice so that she can walk up every afternoon!

“How did you learn all these things?”
“About what?”
“How to take care of a terminal patient”.
“Oh! I talk to the doctors, nurses and therapists and then I learn from them! And I copy what they do”

There is a lot of things I learnt about Rachel – that she used to fly kites!! Internationally!!! Met her husband in a kite competition!! (Rick, if you are reading this, I want you to know that I proudly mentioned you to her!!)

But what I learnt most is what a daughter’s unconditional love for her mother is. Now, I am neither a daughter nor a mother. It is difficult for me to put myself in any of those positions. But I can understand from the prospective a human being selflessly giving up every day for another human being.

Mind you, she just fought her own battle with cancer back!!!

Driving back, my mind drifted back to my parents in India. My dad is battling a new tough battle (I will write about it tomorrow). But my first question to myself was – when will I be like Rachel?

When will I learn how to selflessly love those who need our love and caring the most?

11 October 2017

An amazing experience in the hospice today

I think I am going to do this hospice volunteering thing even after I get a job later. It is amazing how people who are close to dying can value any time you can give them and how what they say can break every stereotype you might have of a dying person.

Take Mr. Strauss as an example. (All names made up to protect privacy). I came back from vacation and the first email that hit me this morning stated that Mr. Strauss has declined and will be transitioning soon. “Declining” and “transitioning” are euphemisms used in hospice language to let you know that you are reaching your goal line.

Well, after my afternoon run, I hightailed to the hospice he was in and timidly knocked on the door. And then pushed it in. I could clearly see that Mr. Strauss was surrounded by a few relatives and had oxygen pipes running up his nose. Not sure whether to bother him and his near and dear ones in his last few hours, I tentatively asked if I could come in.

I had to explain to his relatives who I was. But Mr. Strauss, a cancer patient – who could barely talk thru the end of his disformed mouth – told his relatives “I know him. Let him in.”

You know, he did not look as bad as I thought. Clearly he was in “transition”. But he was in good spirits. As his family left, he asked me if I was leaving too.

“Not really”, I told him
“Good”, he said.

That is when I knew that the schedule of the rest of my evening was shot. (Srinivas, I hope you will understand and give me a get-out-of-jail card for this).

I hung around Mr. Strauss. And I talked to him for nearly two hours. There were a lot of things he said. I am going to highlight a few of them here because I think there are learning points here.

One thing he mentioned is how incredible glad he was how his five kids have turned out to be.
“Raj, tears come to my eyes, to think what they have done for me”.
“Well, certainly you have passed your genes to them”, said I, boosting his ego.
“No. I was the tough, disciplinarian dad. I wish I was not so tough on them. I think they get it from their mom”.
I find out over the next hour that he lost his wife early to Alzheimers. Never remarried.

“Let me tell you something, Raj”
“Yes, Mr. Strauss”
“Never be tough on your kids. They need support, not discipline”.

Not totally sure how to respond, especially since one of my kids is beyond the age where I have any influence, I put out a meek “Great thoughts, Mr. Strauss”.

A few moments of awkward silence later, I tried to move on – “Other than your kids, Mr. Strauss, what are you very proud of yourself?”
Seeing him think deeply, I prepared myself for some insightful wisdom. What I got was…

“I never went to jail”.
Guffawing my heart out, I told him “Let’s keep it that way”.

I was way, way – I mean way way – over my time.

Eventually, it was his dinner time.

As I shook his hand and took leave, I said “I will see you soon”
He did not let go of my hand.

“Raj”
“Yes, sir”
“Thank you for coming.”
“My pleasure, sir”
“Will you come tomorrow?”
“That was my plan, sir”
“Good”, said he as he released my hand.

I had lied through my nose.
That was never my plan.
Well, now it is.
I need him to stay alive till then.

There is a pride in kids only a father can sense from another father.

I will be there.

1 October 2017

The phone call

Finally, he moved.
Gently, he opened his eyes.
And then slowly, turned towards me.

That was a welcome change of pace. I had come half an hour back to spend time with Mr. Loyd (names hidden to protect privacy). As soon as I entered his room, I saw the completely bedraggled figure uneasily moving around in his bed. His beard, long and unkempt, his appearance, generally unruly, he could easily pass off as an authentic homeless person – what with his multiple layers of clothes and loose pajamas – all of which have clearly seen better days.

He had seen me and asked me to take him to the common area. He can walk by himself – albeit, very slowly. So, I had just shuffled along. He had very slowly sat down on a recliner and before I could find a place to settle myself in, he was deep in his nap. None the wiser, I just sat next to him. Frankly, at a complete loss what to do next. There were three other hospice patients around me who I did not know. One was making a constant low humming noise while rocking back and forth in a simple harmonic motion. One had her neck completely down and could not even lift it to see me. And an elderly gentleman was all the while sleeping in his wheel chair.

I just sat there – looking at Mr Loyd. Years of alcoholism had taken its toll on the body. The pictures in his room of his younger days are almost unbelievable to fathom if you looked at his visage in the present form. His motion has become sloth like. His voice very gruff. A few words escape at a time – it is like he is still very drunk.

“How are you feeling?”, I asked, moment he made eye contact with me.
He said something. Very softly.
I pulled my head towards him. “What was that?”

“I want to call my daughter”, is the best what I could understand.
“You want to talk to Grace?”, I asked. Finally, all that poring thru his life history and family members’ names in the hospice files came of use.

He nodded.

“Okay, we will go to the front desk area and call her up”, I told him.
“Will you come with me?”, he asked.

As a volunteer, you know that you are looking for those cues when you have earned the patient’s trust. He seeking me to accompany him was all the positive reinforcement I needed in an otherwise excruciating test of patience.

He slowly got up. When I offered him help to walk, he refused. So, he just shuffled along. And I went along behind him.

“Mr. Loyd, the phone is on the other side”, I said when I saw him take a turn in the opposite direction – in fact, towards his room.
“I know. I need my hat”.

I had no idea why he needed his hat to make a phone call. But I knew that logic is not the way to deal with such patients. Just let them do what they want to do. Go with the flow. As long as they do not hurt themselves or others. The whole idea is to make it a painless transition.

What do you know? He went to his room, struggled to his bed, reached out for a hat that was on his bed and then literally dove his head into it and then picked up his head upright – along with the hat.

Of course, the next five minutes was occupied plodding on to the phone which was on the other side of the building. All the while, I was chuckling at him walking with a cane and a top hat on. Very funny, I thought. I also marveled at the fact that he held the hat steady and dove his head down into it rather than holding his head up and swinging his hat on to it. Must be his mental condition, I deduced.

I am an idiot.

I realized that truism the moment we reached the phone. He reversed his motion – put his head down, took the hat out and what do you know? Inside the hat were numerous slips of paper!! One of them had his daughter’s phone number. In a flash, I realized that he stores his most precious things in his hat and he wears it around to never lose them. He recognizes that he has memory loss and that is how had adapted!!! And the strange way he wears it? To make sure the pieces of paper would not fly away!!!

I was so humbled that I could slap myself. The asymmetry of our relationship could not have been more stark. I was applying logic and efficiency at every step. And he was trying to do the best with the little ability and consciousness he had.

A few minutes later, I fished out his daughter’s number and rang the number. As the phone rang, I handed it to him. I hung around for a few seconds to make sure it was not a wrong number. (His scribbling is terribly illegible). But the moment I realized from his voice that he had his daughter on the line, I took a few steps away to give him some privacy.

I was expecting to overhear him complain about his condition, the premises, the care given to him (patients in a hospice have very little ability to logically process how much help they are being given), the money that he cannot move in his bank. Oh! Yeah! He is given to calling up a particular branch in a particular bank to move some money that he never had. To understand the greatness of humanity, you have to understand that the hospice office once explained the situation to the bank and the bank actually plays along with him – saying they are on it… so that he can get some mental peace!!

Well, as I said, I was expecting him to complain about something like he always did. But I could not help overhearing what he asked first – “Honey, were you able to get that job?”. And his response to whatever she said betrayed the fact that she had not.

As I sank in a chair a few feet away from him, I was just swept up by a flood of emotions. Here is a gentleman, knocking on the doors of death with inability to do anything for himself. And yet, when he woke up from his nap and he looked at me, his first thought was not about himself – but his daughter’s well being. He was trying to find out if she had gotten a job to support herself with.

I have no idea what the situation of his daughter is – I hope to learn as I talk more with Mr. Loyd. But I was overwhelmed by the fact that I was worrying myself about how he was going to get by his days with his physical condition, and all the time, he was worried about his daughter!!

The hat….
The pieces of paper….
The unkempt beard…

They all started shimmying in front of my eyes as I closed my eyelids to fight back a tear or two.

Once a dad. Always a dad.

1
25 September 2017

The human spirit can be amazing…

This morning, I went to spend some time with my patient friends in a hospice center. I had finished with my first friend and then went to the other side of the building to spend some time with another friend. After gently knocking at the door, I entered and found Mr. Ernest (name changed to protect privacy) was laying down in his lounge chair watching TV.

“This is Roy. Do you remember me?”, I asked.
“Of course, I do”, he replied somewhat haltingly.

I am clearly new to this. As it is, walking into a hospice is not exactly for the weak of the heart. And then I have just gotten to know these patients. I am constantly worried and nervous about whether they will understand my accent, how to interact with them and all that.

To break the ice, I asked “Can I start today by getting you something?”
“Sure”, he said.
Getting some confidence back in myself since he was asking for help from me, I asked “What can I get you, Mr. Ernest”.
“A fresh, new body!”

I was cleaning up some stuff on the table as I was having the conversation. I was not sure I heard right or understood what he meant. So, I turned towards him to see what he meant. And that is when I saw the glint in his eyes and the sly smile.

I laughed out so loud that the nurse came in from the corridor to check what the ruckus was all about. He was joking whether I could get him a new body. Turned out the whole morning he had been thinking about the days when he used to play golf in Hawaii and was longing to go out and play golf – just one last time. While the body was not willing (he cannot stand up on his feet), the spirit was undying.

Of course, his joke made the next one hour go by swimmingly.

Driving back from the center, I got lost in my thoughts. I marveled at Mr. Ernest’s ability to not fall in the trap of despondency or self-pity and instead keep up with his good humor and sharp wit.

When I grow up to be as young as him, that is the kind of human spirit I want to have.