Friday, April 24, 2015

The Euthanasia Facility in India!

In Sept 2014, Anna fell off his bed.  We looked for cuts, bruises, swelling, redness, tenderness, etc. but there were none.  Over the next 48 hours, Anna became increasingly disoriented and unresponsive, till finally, I got the panic call. I rushed home (a one and a half hour drive), to find him catatonic.  

Anna was admitted to hospital immediately. All medication was stopped and he was put on a drip. I spent the next couple of hours, leaning over his hospital bed, calling out to him, hoping for a response. After a couple of hours, Anna finally responded.

Anna: Do you know that Euthanasia is permitted in India?

Me (wondering why he is thinking of euthanasia): No Anna. I think euthanasia is permitted only in a few countries in Europe.

Anna:  No. You are wrong.  It is now permitted in India for people who are terminally ill or are like me.  Pause. We are here at the new facility on the banks of the Cauvery river.

Me (I reach out to hold his hand):  Anna, why are you thinking of euthanasia?

Anna: Sangeeta, I am on pallet number 108 on the conveyer belt.  In the queue to the oven.

Me:  What conveyer belt, Anna?  The word "oven" does not even register with me!

Anna: The conveyer belt pallet I am on now. Why is it moving so slow? The system of pulleys and weights are fantastic to see, but something is slowing the movement of the belt.

He explains to me that the system of pulleys and weights is incredible, state-of-the-art. Then he looks somewhere to his left, where there is no one, and asks, “Why is this conveyer belt to the oven moving so slow?  Can you speed it up?”  as if someone is standing next to him.

Me: Anna, you are in a bed. In a hospital.

Anna: No I am on a conveyer belt, moving towards the oven. Pause. You know, the oven slowly roasts a body for 30 mins and then converts it to ash.  Can’t you smell it?
By this time, my heart is beating fast. I am frightened. My father thinks he is on his way to an oven to be cremated, and he is calm.  I don’t know what to do!!

The conversation on the conveyer belt moving slowly and me denying it, goes on for some time, with many pauses.

Anna:  See we are passing the chute from the oven.

Me (confused with this topic change):  What chute, Anna?

Anna (looking left and down):  Sangeeta, the chute that releases the ashes of the cremated.  See! 

My heart is pounding.  I just keep looking at him.

Anna: Oh no! Poor man. He fell from the chute, but is still alive. He is not completely burnt!!

My pounding heart gets louder.  My face is becoming hot.  And I just keep looking at him.

Anna:  Can’t you hear him cry?  Help him Sangeeta!

Me (not knowing what to do):  Anna, let me find someone to help him.

Anna:  Help him, Sangeeta. 

This goes on for some time.  Anna asking me to help someone who has not been completely cremated.  I am rooted to the spot next to his bed, squeezing his hand.  The pounding of my heart is so loud that I am sure it can be heard at the nurses’ station.

Anna:  Wake me up, when I am close to the oven.

Me:  OK, Anna.

He reminds me a couple of times to wake him up before he gets to the oven. He does not want to wake up when he is inside the oven and cannot talk to me.  I promise I will.

He finally falls asleep.

I continue to stand at the same spot, my hands on the side guard rail of his bed, tears in my eyes, my heart still pounding.  I am not sure how long I stood like this. Must have been till my heart rate slowed down and I could move.

Thankfully, when he wakes up, he is no longer in the euthanasia facility.

This hallucination, so horrified and frightened me that it has taken me a long time to write about it.

Anna has hallucinations on other subjects and the duration of a hallucination can vary from a few hours to a couple of days. Most of Anna's hallucinations frighten him. They also frightened me.

Hallucinations normally happen in the later stages of Parkinson's Disease and may be a side effect of Parkinson's medication. During a hallucination a patient sees, hears, feels, smells, and can even taste something that does not exist.

It’s like being in an alternate world, experiencing it with all senses.

As a caregiver, all we can do is understand that a hallucination is reality for patients. All we can do, is walk the path of the hallucination with them. All we can do, is hold their hand and reassure them.  

Thursday, April 16, 2015

Anna Really Wants Jaangiri!

This weekend expedition was to.... ?? Take a wild guess!  Select Citywalk.

Sanjiv and I looked at Air Conditioners, while Anna took a short walk around the mall.  As we exited Croma, facing Krispy Kreme, I asked Anna what he would like to eat - a Rava Masala Dosai at Sarvana Bhavan or a coffee and doughnut at Krispy Kreme.  I should have known better than to ask that question!

Onion Rava Masala Dosai at 
Sarvana Bhavan this Winter
Anna: "Rava Masala Dosai, and coffee"

We make our way to the Sarvana Bhavan outlet (that he does not remember from our last visit there), get a couple of dosais and vadais and eat outside under an overcast sky.

After he finishes half a dosai and coffee (that was not as hot as he wanted it!), Sanjiv pats his stomach and asks him, "Anna, is your stomach full? Feeling like a pregnant woman's?"

Anna: "No." Pause. "Only like in the conception stage."

We laugh.  I know that there is more to come.  Then.....

Anna: "I am sure they have jaangiri."

So off we go to see if they do.

They don't.

Anna is looking downcast and kind-of pouting at this point.

We decide to get him a doughnut for dessert.

Half a doughnut and hot coffee later, Anna finally says "Now I feel pregnant!"

The stomach has been satisfied. But the jaangiri craving continues.

Monday, April 13, 2015

Anna Makes Sleeping a Profession!

People with Parkinson’s Disease have more sleep disruptions than others at the same age, partly caused by the disease itself and partly by the medication given to treat it.

Anna struggles with sleep.  He sleeps fairly early in the night, 9:30ish, stretched out on his back, fingers clasped high over his chest, impersonating a praying mantis. His sleep is disturbed by vivid dreams, nightmares, frequent urination, intense leg ache, and talking in his sleep.  

He also naps / sleeps a lot during the day time.  Perhaps to recoup the sleep lost in the night. In a 24 hour period, he sleeps approximately 13 – 14 hours in a day, always napping after a meal, like an infant.  However, even daytime sleep can be as disturbed as his night time sleep. 

I have also found that if he is woken from deep sleep, his disorientation increases.  Either his dream continues while he is awake, or he is confused about the time of day, or where he is, or what he should do.  So often, we let him sleep and adjust food and exercise timings accordingly.

Each morning, when I visit to wake him, I am not sure if he will be wide awake, or in a semi-somnambanulant state. Each morning, I will ask him (and his attendant) the same questions. How did he sleep? Did he dream? Was it a nightmare? Were there any instances of vocalization? Did he complain of body ache? How many times did he urinate? Was the volume of urination commensurate with liquid intake?

So a couple of days ago, when we woke Anna up for his early morning cup of coffee, he seemed to be half asleep.  His eyes were closed, sitting at the dining table, patiently waiting for the steaming cup of South Indian coffee. I asked all the usual questions, to which, I got monosyllabic responses. I thought I wouldn't be able to have a real conversation, till…..

Me:  “Anna, you said you slept well last night.  But why are you still sleepy?”

Anna: “Because I am.”  

If he were a young adult, I am sure this response would include a “Duh!” at the end. I also think of how irritated he would get when, as teenagers, we responded in the same fashion to his questions!

Me: “OK. Drink your coffee.”

The coffee has been placed in front of him and I wrap the fingers of his right hand around the mug handle.

He lifts it to take a sip.  I watch him carefully, ready to jump and grab the cup, if it slips, as it is at its usual 45-degree angle.

Anna puts the cup down and says “I have made a profession of sleeping.”

Me: “Yes Anna.” Not sure where this is going.

Anna: “If I got paid to sleep, I’d be a rich man”

He smiles.  I laugh.

Even in his semi-sleep state, his wit is far, far better than mine!

We finish coffee in silence.

Me: “Anna, what do you want to do?  Read the paper or take a nap?”  He has always chosen to nap, but I still ask the question anyway.

Anna: “Nap.  I am a professional”

I smile as Anna shuffles his way to bed, assisted by his attendant.

Things that help Anna sleep better

  1. Exercise. Tho' Anna shuffle walks and covers only a few meters at a time, I insist that he walks at least 2 times a day.
  2. Sunlight.  An hour of sunlight helps not just with sleep, but also his depression and body ache.  His is no longer on pain medication and takes it as SOS only.
  3. No caffeine after 7:30 pm. We do not let him drink coffee or sodas after 7:30pm
  4. Limited volume of liquids after 7:30pm.  This helps reduce the number of times he needs to wake up to urinate
  5. Light dinner.  Dinner time is 8:15pm. Anna will often have upma, or soup and toast, or khichadi or poha for dinner. 
  6. Fixed times to sleep / nap.  I have built a schedule for Anna that fixes times to nap / sleep.  Definitely after a meal and a bath. And never wake him up from deep sleep
  7. The TV is in another room not in his bedroom.
  8. We give him his sleep medication 15mins before he gets into bed