22 May 2022

That sentiment hit a note for me

The folks who manage the hospice services where I volunteer have always been a very grateful crew. They regularly arrange for lunch outs, gift cards and what not.

The thank you card this time had a special line that hit a note for me.

“The last good thing that may happen in a person’s life is a hospice volunteer”

2
5 December 2021

What does loneliness feel like?

Driving back from the hospice every Sunday is one of those pensive periods in my week when the mind wafts away to deep thoughts. With mostly unanswered questions.

Patricia is my nonagenarian friend. She is frail as frail can be. It used to be that we would get her in the main area for her meals. These days, even that has become too onerous for her. Every time I go to see her – she is invariably in her bed, doubled down like an unborn baby, deep in sleep.

Or so I used to think. I have realized over the months that she is often awake but too tired to open her eyes. If she did open her eyes to answer any of my questions or ask me for something, it would be only for a fleeting second. One trick invariably perks her up is when I fish my phone out and show her pictures of our dog. Without exception, she will have that blissful smile in her face.

Today too, she was crumpled up in her bed. Too frail to get up and eat. The staff told me that instead of normal dinner – which for others was soup, salad and rice with shrimp and vegetables – she was just going to have a bottle of Ensure and a piece of chocolate.

The feeding was fairly mechanical and uneventful. I would hold the straw up to her lip and she would take a few sips and pull her head away. A minute later, we would go thru the movie again. And kept repeating till we had almost finished the bottle. She opened her eyes and looked at me. That was her silent way of saying she was done. Switched her up to a piece of chocolate. She readily opened her mouth.

A couple of minutes later, I grabbed a wet wipe from her bathroom and cleaned up her face. She was still tired and had not uttered a single word the whole time. I left the room for a brief moment to call the nurse to put the respirator in her nose. (She needs that help in breathing and I do not have the training to handle that device).

It appeared that she had gone off to sleep. The nurse was rearranging a few of the stuff near her machines. I gathered my stuff and started walking out. I had barely cleared the door when I thought I heard something. The nurse immediately called out – “Roy?”

“Yes?” I had turned around and responded.

“She said ‘Thank you’ to you”.

“Really?”

“Yes, she opened her eyes, looked at you going away and said Thank You”.

A little surprised that she was not asleep, I came to the other side of the bed and bent over to be close to her ears and said “Patricia, good night!”

Taking both the nurse and me by surprise, she held her right arm out.

Thinking about it now, I think she was just trying to wave at me. At that moment though, I thought he was holding her hand out to be held. Involuntarily, that is what I did.

The nurse left soon. A couple of minutes later, I was still there by the bedside bent over holding her hand. It was hurting to stand like that. But my mind was racing thru what was going on in Patricia’s mind. She certainly had more cognitive understanding of what was happening than was apparent with her constantly closed eyes and not much of limb movements.

I decided to come to the other side of the bed and sit in a chair next to it. But I was afraid that she might think I was leaving her. So, gently, I told her “Patricia, I am going to come to the other side and seat by you”. She opened her eyes and closed. I realized that she had understood what I just said.

Letting go of her hand, I quickly switched to the other side, sat down on her wheel chair and held her hand again. I talked to her a couple of times but there was no response. For about ten minutes, I just sat there. Our only company was the gurgling noise of the respirator. All the time I was wondering what was she thinking? If somebody has so much cognitive power left – but has little to no physical strength, what kind of loneliness does one go thru laying in the bed hours after hours, days after days?

I also realized how lucky my parents were. They had each other till pretty much their last day and were surrounded by my sister’s family and my brother’s.

Eventually, I let go of her hand. She did not stir.

I convinced myself that she was asleep. Or was she?

In any case, not to take a chance, I did not even say Good night. Just got up, waited for half a minute to see if she would open her eyes and then tiptoed my way out.

On my way out, I reported back that she had finished her dinner and had gone off to sleep. The staff waved me good bye and I promised to come and see them next week again.

Back behind the wheel, thoughts just kept coming in and out. Perhaps like Patricia’s mind swims into active consciousness and out.

When she wakes up again at night, will she remember that I was there? Will she be looking for me? Or has she realized after so many days in a hospice that she has little say over anything? Even if she was to look for something, she was not going to get it. She is at the mercy of other people’s generosity.

What does one go thru listlessly laying down in the bed at that age when you hit that level of physical inability? How painful is it if the mind is active but the body cannot sustain any activity? What does it feel like to be completely dependent on others? How painful is the transition to that acceptance?

The lights turned green. And I put my attention back to the road as I navigated thru a crowded left turn.

2
26 June 2021

What old age looks like!

** all names are cooked up to protect privacy

“Betty, my patient is still sleeping in her room. Why don’t I take this gentleman off your hands?”, I asked.

Well, my hospice patient was sleeping. I was not sure what to do. I came down to the lobby level and saw Betty – at the front desk – struggling with all the calls to the front desk, buzzing visitors in and paying attention to the impatiently walking John (also a patient).

“Thank you”

“No problem”

The next 30 minutes was an eye opening exercise. Gave me a window into what my dad must have gone thru. And what I might too, myself.

You see, John has been suffering from a lot of old age issues. At a macro level, his kids have been great to him. They pay for the hospice facility, they visit him religiously every week and make a big deal on special days.

At a micro level, he has no idea about any of that. He needs them with him NOW!

The walk up and down the corridors was mostly pleas from him to see if I could get his kids to pick up from that place. (He thinks he lost his way and one of his kids just needs to take him home).

When somebody is totally daft, it is one thing. You just talk past each other. The only purpose is for the other person to think you are listening. They have no ability to judge otherwise. But when you swing between the real and unreal worlds like John, it becomes dangerous.

It is a delicate act of balancing between soothing him down when he is angry because he thinks I am not helping and supporting him when he thinks that his daughter is going to call him back moment she is done with work.

He had a mobile phone on him. That had a lot of saved numbers. And he fumbled his way to high heavens trying to call any of those numbers. All this time, walking up and down with me in the corridors.

“Why don’t we go out and sit?”

“Okay”

We settled down. But he was fixated on his phone.

Then I heard the “click” “click” noise!

“What did you do?”

“I think I took pictures.”

“Of what?”

“I have no idea”

Apparently, he was totally lost in the phone options.

“Listen, Mr. John. Why don’t you let me take a picture of you and me so I can show my daughter?”

“Is she in Stamford, Connecticut?”

“No. she is here, in Georgia”.

“This is not Georgia”

“You are right. I meant she is in Georgia. You and I are in Connecticut”. (I had to play along with his memory)

“Will you send it to my daughter?”

“Moment I meet her, sir!”

“Okay”

And of course, the instant I take the picture, he starts calling his daughter again!!

The evening went on like that…

Here is what I learnt that evening – When you grow old, you do not want anything more than being surrounded by your near and dear ones. You do realize that they have more important things to do in life. But you really, really want to be with them.

If you ever get a chance to make a difference to an old person by just being with them, please do. You do not have much time left. I know I do not!

24 April 2021

Finally, got the clearance!!

The good news is that after fourteen months, I got the message that I am finally cleared to go back to hospices to spend time with people who are in the last stages of their lives. Need to still get the painful subcutaneous Mantoux test done (to test against TB), but right now I have been assigned two young ladies (both 87) pining away their last days in two different hospices. And I have a brand new mask to show off too!!

The bad news is of course, none of my old friends that I got abruptly sundered from are there any more. In fact, most passed away without even being able to see their loved ones at the height of the pandemic.

28 December 2019

Nikita visits my friends in the hospice

Nikita had asked to accompany me to one of the hospices during the holidays. Finally, our times matched today. (You will be surprised how busy a high schooler can be even during the Christmas holidays). I am glad she came today.

When I arrived, one of the patients was particularly agitated. We will call her Maria for privacy reasons. I sat her down and started talking to her. She just wanted to go home. Of course, being a memory care unit patient meant most of her memory and cognitive power has been fried. She tried explaining that her dad was supposed to come and pick her up and he has not come yet.

“How old is your dad”?, I asked her softly
“Oh! mid seventies, I think”.
“How old are you?”
“I think I am older than him”.

You get the idea about how the conversations go. Nikita, who was patiently watching all this time, drew a chair and sat next to us. I introduced her to Maria. Within seconds, they were chatting like old buddies. Most of the discussions went in circles. After some time, I left them to do my rounds with other patients. When I left, they were having a discussion on who looked prettier. Each insisted the other did.

Half an hour later, I came back and these two were still talking. Nikita asked if she could stay for some more time.

Eventually, I had to tell her that we needed to go home for dinner. Maria immediately asked if I could give her a ride.

“Where do you want to go?”
“I live in Ohio”
“And what when your dad shows up?”
She thought for some time and said “I think I will stay”.
“No problem. He may take some time. The weather outside is not good”, I lied thru my teeth.

The hope was that the sleep medicine would soon do its trick and one more day will come to an end in her life.

Also, the further hope is that Nikita got a sense of the cycles of life we go thru and how blessed we are now. The proudest moment for me was when the staff – and one particular patient too – asked her to come back.

20 September 2018

Goodbye, Mr. Stocks!

When I left your bed at 8 PM on Monday with your beautiful family around you, I promised you that I will visit you the next morning. Perhaps you did not hear me with all the struggle you were going thru – gasping for breath. Or perhaps I should spoken up a little bit so you could hear me.

The next morning came for me. But not for you.

Ruffling my fingers thru your sweaty hair while you lay on the bed, it felt very strange. This was the first time – in the one year that I knew you and have visited you at least forty to fifty times – I actually went in to your room. Every single time I visited you, I found you in the common area and that is where we spent all our time.

It was so strange to see you lying down without any movement. Before that you were the person who could not sit down. The only way for me to spend time with you was to walk next to you as you kept walking up and down the corridors. Purposelessly. Incessantly. Always whispering something to yourself. The only reaction I would get out of you was when I gave you a handshake. Inexplicably, you would burst into a smile. How many ever times I repeated it – that was your acknowledgement. Unfailingly.

You never told me about your son and your daughter. I got to meet them for the first time on Monday night. You never told me that you were part of the armed forces. I saw the certificate in your room. For that matter you never told me anything! Or to anybody else. I learnt from your wife that at the young age of 48, you had started deteriorating. I got to know you about twenty years after that.

By that time, you had lost your ability to say anything. I would ask you simple questions. You would stop. Look at me for a long time. As if you were trying to process what I had said. You would then mumble something – that was barely audible or coherent for me. I would nod. And away we would go shuffling down the narrow corridors of the hospice again.

Last couple of months started being different. Your walks got slower. And for the first time, I saw you tentatively sit down and doze off in the sofa between your walks. It was there for everybody to see that you had started to slow down.

Till you stopped entirely on Monday night.

Ours was a relationship borne out of silence. Its strength was never rooted in words. It was in the time we spent together silently.

Without a word you came into my life.

Without a word you went away.

But I had to put in a few words for you to remember our time together!

16 February 2018

A sub chapter in my life that I almost forgot to write about

As you know, I spend a lot of time on the road for work which means many an evening is spent grabbing a quick dinner sitting at the bar. And the days I am not traveling, usually Sharmila and I go out and get a drink. A common theme in all these settings is that I make friends with the guy or the girl behind the bar and get to know about their life stories.

There is an interesting pattern there. Try it out yourself if you do not believe me. More often than not, it would be a young person in her or his twenties. They would have invariably finished their high school. After that either they could not afford college or are working at a bar to earn money to some day go to college. I know of kids (and I consider twenty year olds – kids) for whom a few thousand dollars is the difference between going to college or not going to college.

A few months back, at the urging of a friend of mine – Aaron, I attended a breakfast meeting of YearUp.org. I had some familiarity with this organization from one of my prior jobs. I would recommend that you read up on them – what they do and all that if you live in the US. In short, they take kids who are done with high school and try to give them a “break” into the corporate world.

Money is not the only issue with the kids. Professional skillsets is also not the only other issue. Most of them do not have the background or exposure to present themselves. They have a hard time writing a reasonably good resume. Because they have no understanding of what corporate America thinks is a “good resume”. They have little to no interviewing skills in a corporate set up. Most of them would not even know how to talk to an executive for a few minutes.

That is what YearUp tries to solve for. They try to give those kids some professional skills and a lot more of the soft skills and try to engage other corporations to give them an opportunity at an internship for six months. In all, as the name suggests, the full program is for a year.

But there is a catch. They have strict rules for the students. No cuss words. Always formally dressed. Always carry a resume. Never be late…. If you play by the rules, the year is free to you. If you get demerits, you are thrown out of the program. Lest you think these are easy… I want to remind you that most of the students can not afford cars. One of my students takes a bus, then a train, switches to another train and then a bus again – a two and a half hour ordeal EACH WAY to go to his internship place. And he cannot afford to be late as long as he wishes to stay in the program.

In any case, late last year, I enrolled myself to give my time to the cause. I came in mid stream but a few folks – like Amrutha and Carla – were very helpful in getting me inducted. I was assigned twelve students. I have to tell you – all of them have incredibly humble beginnings – one girl pushes disabled people in wheelchairs at our airport, one girl worked in the catering section of a local racetrack, one guy mows lawns, one guy worked at the backend of a local retail store… but their determination to be successful someday is jaw dropping to me. I certainly had a humble beginning myself – but nowhere near these folks. My parents gave up a lot in their lives but they always paid to make sure we got college done – even if they had to borrow money. And yet, these kids while not having that advantage, has more determination than I ever had.

Ever since last November, I have been spending one on one time with these new friends of mine helping them understand how to present themselves in a corporate environment, how to behave in a corporate environment, how to write resumes, how to interview, how to think about careers and all that good stuff. I am thrilled to say that due to the efforts of Yearup, six of my twelve kids have scored jobs in the last two weeks. I am still working with the other six.

If not anything else, I would ask you to just go to Yearup’s website and read up about them. They just want to create opportunities. They certainly created a few for me. Who knows? Someday you might create some opportunities for a few of their kids too!!

P.S. In the picture, I am addressing a larger set of students giving them my thoughts on how to work with recruiters …

22 January 2018

She gave me something to think about… What do you think?

Last week, I spent some time with one of my favorite friends in one of the hospice centers – let’s call her Mrs. Nancy. I walked into her room and was not sure she would have remembered me.
“Mrs. Nancy. Remember me?”
“Of course. You went to India to see your dad.”

That was surprising. In fact how our whole brain works or sometimes chooses not to work still is an enigma to me. Both Mrs. Nancy and my dad can remember certain things so well and then there are obvious things that we have to keep repeating to them!

“So, how is he doing?”
“Thank you Mrs. Nancy. He actually has had a surprisingly good progress. That was very encouraging”.
“That is good”.
“Indeed. Looks like I missed your birthday when I was gone.” I had noticed a few cards over her table.

She kept looking at me. I was not sure I had a grip over the whole situation. So I asked:
“When is your birthday?
“Jan 19th”, she said after a quick thought.
“Jan 19th? I see. Let’s see… that was… that was… wait a minute. Today is Jan 19th! Is it your birthday today?”
“I do not know”

I opened up a couple of cards and sure enough – one stated Jan 19th.
“Happy Birthday! It is your birthday today!!”, I yelled.
I was not too sure why I was yelling. I was inexplicably excited.

“Have you read the cards? Did somebody read them to you?”
“I do not remember”
“Well, that is what we are going to do now then”.

As you see in the picture, I held the cards very close to her and slowly read them out. The particularly favorite one for me was the one from her son and daughter-in-law who wrote a very touching card, I thought. In fact, I read it out a couple of times for her. (The picture is of that card).

I did not realize it then, but the picture has partially caught that incredible smile that can come only from a blissful pride in your child.

Later, when we were done, I packed up the cards and then settled down in my chair.

Suddenly, she remembered my dad again. She can’t remember her own birthday but she remembered a person she had only heard about a couple of times. Go figure!

“Do you write to your dad?”

Whoa! I am reasonably fast on my feet – even if I say so. But that one stumped me.
“No”, I stammered… Too many things were swirling in my mind – the two weeks it takes for a letter to go from Atlanta to Kalyani. The missed mails. etc. But I soldiered on – “I call my parents up everyday”. I omitted the part that should have clarified “parents” mean “mom”. My dad can’t hear anything on a phone.

She nodded. I figured I had made peace with her.

Till she came up with the words that has been ringing in my ears – “Sometimes you should write him a card. He can read that over and over again”.

I must have stared at her for a few good seconds.
That is true. Phone calls are one and done. Cards and letters are forever. I know how much I cherish the letters that I have saved from my childhood. And how much I regret not saving more of them.

She might have just pushed me to write to my dad. Maybe a letter every other week? What do you think? Should I do it?

Would you do it for your dad or mom? Do physical pieces of memory transcend ephemeral ones like phone calls?

24 December 2017

A memorable statement from one of my hospice friends

Spending time with folks who are in the last short strokes of life sometimes can be very funny, sometimes very educational and sometimes outright heart-tugging. If not anything else, watching the compassion that the patients show to each other and the employees there show to the patients, is singularly educational.

I had a memorable moment day before yesterday. First let me set the context. One of my patients – a octogenarian lady – is more or less physically functional – however her short term memory is pretty much non-existent. She does move around in a wheel chair but she is able to move herself.

She has three kids but I am under strict instructions not to bring the topic of two daughters up unless she happened to mention it and even then I am to just acknowledge and move on. There is a particularly painful history she has with her daughters but let me spare you of that.

The son, on the other hand, is a completely different story. It was her son, as I understand, who moved her from a pretty bad situation and put her in the hospice that is very close to her house. He visits her often with his wife and kids and takes her to their place once a month. She absolutely lights up whenever anybody talks about her son.

My last visit this year to any hospice was this Friday and she was my last hospice friend that I had to visit. I was expecting a 20 minute experience. Turns out, we talked for nearly an hour. She was in a very good mood.

So, you ask yourself – what can you possibly talk for an hour with a stranger? First, you will be surprised how people want to tell their story if you let them. In this case, I did not have to bother about that either. She is so devoid of short term memory that an hour of conversation is pretty much twelve re-runs of the same five minute conversation.

I must have answered her standard questions about my family, my daughters, where I work and so on a clear ten times or more. Similarly, she made sure I had heard about ten times about her grandchildren, their ages, her original place of birth and such other things.

To break the monotony, at times, I would press further on the topic of her son – since I knew she is very proud of her.

“Your son, Mrs Valerie, is a gem of a guy”. (names changed to protect piracy)
“He is. He is an absolutely great son. I am very proud of him.”
“As you should be. You should be also proud of yourself how you raised him.”
“Thank you. I had friends help me.”

I was not sure how to avoid broaching another sensitive topic – her husband. So, I just smiled and was wondering what to ask next when she dove into the topic herself.

“My husband left me after my son was born. I needed my friends to help me”.
“I am sorry to hear that. But I am sure glad your friends were around.” Trying to veer away from her husband, I continued “You chose some real great friends”.

She was not to be deterred. “My husband ran away with a floozie”.

Okay, I do not know how you would react, but I was stumped. At that point I was hoping that she will ask me again the same questions about me that I had already answered for a few times.

“Did you re-marry?”
“No”
“So, you raised the kids all by yourself?”
“My husband left us. I had no choice. But I had friends help me.”

“I have to say this, Mrs. Valerie. I am very proud of you and what you have done. I think I have a lot to learn”
“Why, thank you!”
“They say that a great mother raises a great son”
“That is not true”
“That is not true?”, I asked somewhat confused.
“No. A great mother raises not just a great son. A great mother raises a great father”.

It took me a minute or two to realize what she was trying to say. Then it dawned on me. Her pride in her son was not how he has treated her – but how he has treated his own kids. It is not the son in him but the father in him that she feels so proud of.

She immediately interrupted my thoughts with the same old “How many kids do you have?”, “Are you retired?”…

On the drive back from my last hospice visit of the year, I could not help think of a young lady with three kids suddenly deserted by her husband. Somehow, somewhere, she picked up her broken pieces of life and must have made a promise to herself. Although the newborn son she had was going to be bereft of a father figure in his life, she will work the hardest to make him the absolute greatest dad in the world. For sure, she would make him – in her own eyes – far superior to the man who hurt her.

Boy! Did she come thru on that promise!! “A great mother raises a great father”!!!

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.