A few Nazrulgeeti songs from my sister and myself on the tabla…

Sisters in bright clothes…
Brothers in kurta-pajama…
Myself in shorts…

It is all about time honored traditions 🙂

I am pretty sure this part was not part of the plan… 🙂

Last time I had “bhaiphonta” with my sister was when I was 17 years old. (This is a ceremony where sisters celebrate their brothers).

And today, at 51 years, I am exactly three times as old. After a long time, finally, I was able to keep a request of my sister…

One of the challenging aspects of going down with some of these eventually-life-consuming ailments is that everybody – the patient and others around have to go thru a sharp and excruciating learning curve getting used to the new normal. One usually does not get trained for these kind of phases in life. Sometimes, the best training you might have is what you recollect having seen happening with your grandparents or other elders while growing up.

Yesterday, most of the day we struggled with that learning curve. Dad was clearly uncomfortable. He was being very restless the whole day. Kept us on our toes trying to figure out how to ease some of his pain. The problem is that patients cannot always describe what their problem is. Of course, with his speech severely debilitated, he had his own challenge even putting words in his mouth

At around 11 at night, my brother theorized “I think he is having difficulty with his breathing”. Among all other complications, my dad is also a COPD patient. His lungs are very weak and only a fraction of it is functional. My brother then gave him a treatment to boost his lungs – I guess some kind of medication that you inhale thru a nebulizer.

In about 45 seconds or so, dad went off to sleep From his facial expression, you could see that he was much more comfortable. It seems his challenge was he was not getting enough air, but obviously, a patient like him cannot self-diagnose it. We had to learn it by stumbling upon it.

At the time of writing this – and it is past 6:45 in the morning, he is still knocked out. In fact, I can hear him snore. No other sound can be as reassuring as that right now.

Going back to last night, we then finished up dinner, got mom to sleep off and then spent some time knocking ourselves out too 🙂 My brother, sister in law and myself. Finally, we were relaxed enough to open that bottle of vodka that I had gotten after fighting thru the rains last evening 🙂 Whipped up a quick cocktail late at night…

Stacy Roy Roderman, you had wisely advised in a prior comment that I should remember to take care of myself too. May I submit this picture as Exhibit A in support of that 🙂

The morning was relatively better and then it quickly deteriorated from there. However, on the brighter side, he slept well last night. Which means, we all slept well!!

In the morning, I had put him in the wheelchair and wanted to take him out. But we got completely stalled by the steady and heavy rains. We were all rained in for the entire day. I had brought him out to the living area and had him sit around with us.

In a glimpse of his old self, he asked for the newspaper. Between my sister and myself, we folded the newspaper and turned the pages occasionally for him. I could see him intently and slowly read the words. And then he would lift his head up and stare at space like he was thinking something or trying to remember something from the past.

Eventually, he slept off in his chair with the newspaper in his hand.

Those smiles and better-than-normal state for my dad did not last long. I had gone to bed at around 12:30am. By 2:30, my dad’s ailment had taken a firm grip and gotten the upper hand. I woke up suddenly to loud yelling. Glanced at my Fitbit to check the time and rushed to my dad’s room.

Dad was in bed – clearly awake – and was yelling as hard as he could. The assistant lady was helplessly sitting beside him. And my mom was deep asleep next to my dad. My dad was trying to wake up mom with the one arm that is still functioning. But mom is so overcome by exhaustion – and as I have mentioned before, she is a patient herself – her body just could not take any more in spite of all that chaos that was happening a foot away from her.

I went by my dad’s side and started to calm him down. He was slurring all the time. Completely incoherent in his speech, there was absolutely no way to communicate with him – let alone apply reason or logic. You could sense that he was feeling very helpless and wanted my mom to be with him. As part of his brain damage – he calls my mom “mom” now!!! He does not remember her name. He just calls her “mom”. I will write about a defining moment in my life about my dad and his mom (my grandma) later.

I tried a lot of things – getting him to sit up, getting him to lie down, giving him water, just talking to him in soft voices…. He kept on going thru a phase of what seemed like a few moments of logical thinking (“Go to your bed! It is too late now!!”) followed by a few minutes of complete insanity (“Call mom! She has borrowed money!! I need to drink milk!! – and those were the words I could actually comprehend). In about 20 minutes he tired himself out and then went off to bed.

I went to mine to start writing my blog. He woke up in another 10 minutes and we went thru this cycle three times till he finally slept off at around 4am. My mom never woke up at all thru all this.

Sat in the balcony and made a few birthday calls to US. Checked the emails and realized one of my patients in hospice had “transitioned” this morning. When I went to check on him on Monday before leaving for India, I had met his son-in-law there – it was pretty evident he was not going to make it for too long.

Shut down my computer, overwhelmed with my thoughts of my dad, my hospice friend who is longer no more and my mom.

When I go to hospice, it is a volunteering thing. If I want not to deal with a situation or am frustrated by a patient, I can always walk out. Or go to another patient. I have a choice.

The caregivers in the hospice – they have less of a choice – but at some level this is their profession. They are trained for this and to some extent, they have chosen this as their calling. But still, my heart goes out to them watching them keeping their sanity amidst some of the gut-wrenching scenes. (How do you really deal with a situation when the patient helplessly looks at you and asks – “Can you speed this up?”. Yes, I have seen that happen with one of my patients)

The assistants we have here at our house – my heart goes out even more. They are not professionally trained at all. These are middle aged women who are doing this because they need a livelihood. I have found, so far, all of them extremely compassionate and incredibly patient. What they do not have in training, they make up in sincerity.

And then there is my mom. She is having to carry the biggest burden of the care giving. She has refused to sleep anywhere but next to my dad in spite of knowing that she is going to not get much rest. Dad is yelling always for her – without any rhyme or reason. She has not complained yet of her situation even once or has asked any of her kids for any more help than we are giving now.

Here is the tough reality – she was offered no choice. Life dealt her not the brain stroke itself but the biggest collateral damage it can cause.

Being a primary caregiver is much tougher than I will ever realize.

By the way, when I went back to dad’s room, mom was changing his diaper. To give them some privacy, I stepped out and came out to the balcony to enjoy the dawn break – something my dad and I often enjoyed together.

Went back a few minutes later and saw that the kitchen lights were on. Stepping in, I saw what was going on… My mom, instead of going back to sleep, was in the kitchen making tea for me!!!

Like I said, being a primary caregiver, is very very tough.
Being a mom? Much tougher, I suspect.

Being both? Beyond my level of comprehension…

Dad was sitting in his bed. The nephews were done with their firecrackers. I was wondering what to do. That is when I got a bright idea (and I take a lot of liberty when I call my ideas “bright”) to see if I can handle myself if I were a patient. The idea was to pretend that I could not move my legs and had to get myself everywhere in dad’s wheelchair only using my hands.

The initial moves within the room was easy. Dad had an incredulous look on his face but he was okay with me trying out different things. (just like in my childhood). Then the obstacles started coming. To get to the balcony, I had to negotiated an inch and a half high separation ridge (which also makes the door way watertight when you close the door). I was just not being able to push myself thru it.

It became a cerebral problem for me. What the weak forearms could not solve, I had to solve by using my wits. As I was thinking about the problem, I flashed back to our eighth grade physics teacher (we called him “Lambda”) explaining to us why pulling is easier than pushing.

And that is really how I stumbled onto the solution. I had to back into the ridge and then with a fraction of the energy was able to pull myself up. Over time I also realized that if I could do this one wheel at a time (needed a wide doorway for that), I could make the problem even easier.

Imagine the scene – totally delighted with myself, I was spinning around from room to room (I was not screaming “Wheeee” though). Then the nephews and niece showed up. That is when it got really interesting. Fortunately, they did not want to try it themselves. I was not in a mood to share my new toy, anyways. But they took a bet with me.

The bet was that I had to get out of home, get inside the elevator, go downstairs, open the complex gate and go out in to the street. No putting my foot down. Only the wheelchair and my hands.

The biggest challenge was squeezing myself into the elevator. The wheelchair barely fit in – the door was so narrow. And then I had to back myself in – because there was a difference in the level of the elevator floor and the building floor.

Long story short – as you can see from the pictures taken by my eldest nephew, the lunatic did escape the asylum. What is more, once on the streets, he put on as high speed roll. Worse, he went “Wheeeee”!!!

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!!!