5 December 2017

Two lessons learnt after three months of volunteering at three hospices…

Long time back, I had read a book “Top Five Regrets of a Dying Man” by an Australian hospice nurse – Bronnie Ware who had distilled her 51 years of being around people who were waiting to die in 5 simple truths on what we regret about when we look back at life. Sometime around then, working at a hospice became an entry in my my bucket list after reading that book.

First, I reasoned that it would help me set perspective for the years I have left. But more importantly, I thought there was a second part of that book Bronnie meant to write some day – what the postitive reflections are that people have once they realize that their days are numbered.

Getting the opportuinity to work at three hospices for the last three months (started with seven patients, lost four of them and added six more), I am starting to get some glimpse of those reflections. Specifically, I have come to two realizations…

Lesson 1: People take great pride in their children

Without exception, every patient – at least the ones that can hold a rational discussion – is very proud of their children. Even the most quiet ones can become animated if you just ask them “What do your kids do?”

You probably remember the gentleman who kept his daughter’s phone number in his hat. You may also remember the blind gentleman who was very proud of how much his kids do for him. I even have a patient who has a picture of herself with her three kids on her shelf – but I am not allowed to talk about the daughters (who as I understand are fighting unsuccessfully drug addiction and swindled their mom of a lot of money). Try talking to her about her son though and she will hold court for at least half an hour before she will come up for breath.

The general sense I get is that in your last days, you realize that your kids are one of the very few things that are absolutely your own creation. Nobody else could have create exactly they way they are. And in any which way you have influenced them – your effects in this world is going to outlive you by about 30 years or even more.

Lesson 2: Everybody has a story. And they want to tell it.

Once a patient starts opening up, almost always it is about their past life. It is like they just want somebody to listen to their reflections. Most are very proud of what their life has been.

The other day, as I was walking from the parking lot of one of the hospices to the building itself, I saw an old lady walking along with her walking stick enjoying the sun. No sooner than had I greeted her and asked her how she was doing (I did not know her at all), she stood there for thirty five minutes and gave me a synopsis of her life story. With a great sense of humor too!

One of those patients who is no more (in fact, he passed away when I had gone to India to tend to my dad), used to wait for me to come the next time to tell me one more of his chapter of life. Same with the blind gentleman.

Now, realize that some of those stories were not very consisten. For sure, they were biased. But the accuracy of the story is not my point.

My point is, I think before they die, they want their story to be heard. They want to leave their story behind. They are proud of the unique achievements they have had and most look back with some satisfaction. But there are no avenues for them to let the world know of their story. And perhaps, they realize that with them, their story will die too. Not too many of them are going to write down autobiographies.

Giving them an avenue to narrate their story the way they saw their life is an interesting “service” I have stumbled upon. One thing is for sure – each and every one of them has a story. And they are in a hurry to get it out… if you have the time to listen.

Those are the two lessons for now.

Would love to exchange notes with any of you who might have had similar or contrarian experiences.

I will certainly keep you posted as I learn more from my association with hospice patients.

23 November 2017

Of turkeys and such…

“Good Morning! How are you?”
I quickly recovered from the unexpected greetings from a stranger, stopped in my tracks and wished back – “I am good. A very happy Thanksgiving to you. How are you?”
“I am waiting for my son to come and pick me up”, he said grinning from ear to ear.
“That is so nice. Have a great family time”.

By this time, I had figured out what was going on. I went to the lady sitting in the next sofa with a walker near by. “Good morning. And a very happy Thanksgiving. How are you doing this morning?”
“Happy Thanksgiving to you too. I am waiting for my son in law”.

This morning after my coffee and all that, I told Sharmila that I would go make the rounds in all the three hospices and try to be back before the girls wake up. I was worried that some of the patients may not be able to see their families on Thanksgiving day (some have family well outside the state). I was going to wish them a very happy Thanksgiving and if I found that somebody was not going to get the gift of family presence for one reason or the other, I was going to sit with them and perhaps spend some time with them. I am no family to any one of them but caring and companionship might count in their books, I figured.

As I entered the first hospice, I sensed right away that something was different. There were a lot of the patients sitting in the atrium. Most of them were not in their shabby clothes. And everybody seemed to be wearing a smile. I was briskly walking past them to meet my own friends there when I was stopped by one of those sitting in the atrium. And that is how the conversation above came about.

I went from table to table, sofa to sofa and pretty much wished everybody who was sitting there and it was more or less the same story. Everybody was waiting for their son or daughter or son in law to pick them up and take them to their homes so they could have some family time together on this Thanksgiving day. And without exception, all of them were going to come back the same night.

Finally, I went and visited two of my friends who live in the assisted area side. One – who is my assigned patient was waiting for her daughter to come and wheel her out. The other – the blind old gentleman who is not an assigned patient of mine was super excited. He had a tie on and a tucked in shirt, a vest and the whole nine yards.

“You must be very excited that you are going to see your family today?”, I asked.
Big mistake.
“Well. Raj, I am not going to exactly see them”, he said gesturing some air quotes with his fingers. Gosh, that could have been really really awkward for me had he not started laughing – “You know what I mean. I have gone blind. I can’t see. But yes, I am very excited.” Well, everybody was in good mood!!

The scene inside the memory care unit (this is where all the folks with Alzheimer’s Parkinson’s, brain cancer, deep dementia etc stay in secured premises) was a little different. The same wishes from me about Thanksgiving had most of them staring at me. I realized that none of them had any idea that it was Thanksgiving today or had any memory of what Thanksgiving was all about.

Lowell was still relentlessly pacing up and down the corridors in very small steps talking to himself incessantly. Jenny asked me to look at the red birds flying behind my head as a response to my Thanksgiving wishes. Leanne was constantly shaking even as she sat there staring at the Macy’s Thanksgiving parade put up on the TV in the common area.

Then a gentleman walked in and went straight past me and sat next to a lady sleeping on a sofa on the other end of the room. She was a patient there – and I had seen her before but I had never talked to her. After about five minutes, I noticed that the lady was still sleeping and the gentleman was still sitting next to her watching the TV. He looked neither like a patient nor a staff member.

Curiosity got the better of me and I went over to him and introduced myself. Found out that he was that lady’s son. She is not in a situation to go home. She cannot have Thanksgiving dinner with them. She would not even recognize any of the family members. He is the only surviving child of hers. He had come to give her company for a few hours before he went back and joined the rest of the family for their family get together.

My story about learning the true spirit of Thanksgiving and family ties today will not be complete if I did not tell you about another set of people in the hospices – the staff there. Me having my big mouth obviously had to go around wishing them and asking them about their plans. I was really amazed and somewhat taken aback to realize how much adjustments they and their families made to their personal lives to accommodate the far less fortunate patients. As an example, the CNA had completed her Thanksgiving dinner the previous night with her family so she could spend the time taking care of the patients thru the day. Not one of them seemed to betray any frustration for having to work today. If anything, they seemed to be trying harder to make the patients feel happy!

Driving back home – very hungry (I did have one patient who had no family coming – so I landed up spending an hour talking to him and that made me very hungry in the morning) and somewhat overwhelmed, I tried sorting out in my mind the great strength of family ties that binds us together. The wheel bound stranger waiting with a grin on his face for his son to take him home for a few hours, the son who came just to sit by his mom who has lost her ability to understand what a family means, the staff who has chosen to balance the family at home and those that they are family to – their patients…

It is a great thing that at least once a year, we all step back from our daily lives to acknowledge our immediate and often our larger families. In this hustle bustle of modern life, it reminds us about what should be truly important to us.

Happy Thanksgiving y’all!!

16 November 2017

What if your eyesight was taken away from you?

I was somewhat flummoxed about what to do next. I had just concluded visiting one of my patients in the hospice. I had gone to see a new patient that I had been just assigned but he was deep in slumber. At that hospice, those were the only two patients I had. I was wavering between whether to go back home or visit another hospice center half an hour away when I noticed a blind person shuffling along with his walking stick in the corridor. Two things stood out. First, he was reasonably well dressed – and when I say well dressed in a hospice, I mean his shirt was tucked in and his hair was combed. However, he also did not seem to know where he was going.

I stepped up, cleared my throat and asked – “Are you trying to go somewhere, Sir?”
“Yes, I am trying to get to my room”, he replied.
“You live here?” I will admit, I did not think of him as a patient.
“Yes. But they have changed my room. And I am all confused now”.

“Okay. Maybe I can be helpful. What is your room number?”
“I think it is 5…7… something”.
I knew that the hospice had no such room number. The highest was 540. So, tactfully, I asked “By the way, my name is Raj. What is your name?”
“Louis Armstrong” (name changed to maintain privacy).
“Hang on here”.

Then I walked up and down a couple of corridors and found his name tag outside room 531.
“Okay. Your room number is 531. I can help you get there”.
“Thank you. Who are you?”
“Oh! I am just a volunteer. I spend time with patients”.
“So you are a doctor or a nurse?”
“No. I just spend time with patients”
“Doing what?”
“Mostly talking to them. Listening to them. Giving them company. Taking them for a walk. You know all that stuff I am allowed to do without a medical degree”.

By now, we had entered his room, All this time he used his walking stick to feel his way thru and I would just tell him which way to turn.
“So, you just talk to people?”. HE seemed almost incredulous.
“Yeah! Something like that”
“So, you will talk to me?”

Well, that presented an interesting conundrum. He is not a patient of mine. In fact, he is not even a patient of the company I volunteer for. But what the heck? I did not have anything better to do.

“Sure. Tell me your story. Who are you? Why are you?”

And the afternoon started rolling from there….

Louis was a NASA engineer. He worked on the first stage of the rocket that eventually put the first man on the moon. He also worked on the first stage of the rocket that put the shuttle into space.

And he was a World War II veteran. Who served in Burma where he was shot down from the sky.

Suddenly, he asked “Where are you from?”
“India”
“Which part of India”
“Calcutta”
“I have been to Calcutta”
“You have?”
“Yes. Do you know what is a third class compartment?”
(I had a vague memory that trains in India had three classes of compartments when I was growing up – usually it is only two now)
“I can’t remember”
“Well, there is no glass in the windows for the third class”
Laughing, I asked “How do you know?”
“Well, we were sent from Bombay to Calcutta by third class compartment in a train to proceed to Burma”
“Ah!”

Louis has gone blind slowly over the last thirty years.
“Glaucoma?”, I asked
“Exactly. Are you sure you are not a doctor”
“Trust me. I am very sure. Tell me how was the transition. Are you used to it now?”

“Raj, unless you are born blind, you never get used to getting blind. You really do not know how much you give up till your eyesight is actually taken away from you. I know it is fall season now. I know how the trees and leaves used to look like but I cannot see it now.”

“Do you think it is more difficult to be born blind or go blind”?
After a few seconds of thought, he said “I do not think I can compare. I do not know what being born blind is like. But I also think it is much harder if you are given something and then it is taken away from you than never been given at all. You do not know any different when you never had it to begin with”.

Believe it or not, by then, it was almost an hour and a half that we had been talking. And when I say, talking – I mean he did all the talking. I was mostly listening.

Finally, I let him know that I needed to go.

“Raj – you said Raj is your name right….?”
“It is Rajib. But I go often by Raj”
“Right Raj. I know you do not do this for a living. So you may not come back. And even if you did and went past me, I won’t realize it. But if you find time, I would like to spend more time with you.”
“Sure thing. I have so much more to know about the rest of the life”
“No. Next time, I want to hear about who you are”
“You do?”
“I do.”

Well then, I have to come back, don’t I?

Post Script: Two days later, I went back to the same hospice. After finishing with my own patients, I went looking for him. He was not in his room. I went around all the corridors and finally found him in the common area totally immersed listening to the piano being played by a gentleman who was doing a rather good job at it, I thought. Another volunteer, like me, no doubt.

I thought a lot and decided not to bother him. Felt guilty that I did not let him know that I was around. But did not want to distract him from something he was obviously enjoying either. Will go see him tomorrow.

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.

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.