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.

“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.