Fourth December 2017, 11.05 am.
Anna is declared dead.
Though I knew the day was coming – Anna and I had prepared ourselves for the end-of-life – I wasn't really ready for it.
When I became my father's sole caregiver, I researched, in greater depth, end-of-life events for someone with Parkinson's. I learned that no one dies of Parkinson's disease, they die with Parkinson's disease. Major causes of death are aspiration pneumonia and other pulmonary infections, inability to swallow, and falls.
I discussed these end-of-life events with Anna. He knew them all, for he had researched them way before I had.
He was clear about what he wanted and did not want. He wanted to die earlier than later. He did not want any cardio-pulmonary resuscitation. He wanted no tubes to keep him alive – no ventilator, no feeding tube. No what he called, “artificial and invasive ways to keep me alive.”
So I expected the worst. I knew Anna was dying. I was prepared / preparing for the long haul of managing a bedridden Anna. Possibly one who would need to be in a hospice for a period of time. An Anna that I would have to see struggle for every breath or starve to death.
And in the end, thankfully, his heart just gave up.
My family, friends, and readers have asked how Anna passed away. They want the details. Before I give the details, let me tell you about a "play-rewind-play" dream that robbed my sleep for over three weeks before Anna died.
I would dream every night – dream that I get a call from one of the attendants to tell me that Anna is seriously ill, and I need to come over post haste. In my dream, I rush out of the house. I walk a few meters towards Anna's house. I look down and see that I am wearing my pyjamas. Mentally, I admonish myself. I can't walk outside my house in my pyjamas!
The dream rewinds and restarts with the call. This time, I change into trousers. And walk a few metres ahead of the last time in the dream. I look down at my feet and see I am wearing rubber chappals. Not the right footwear to take Anna to emergency!
The dream rewinds and restarts with the call. This time, I change into trousers and keds. Again, as I reach a little ahead of where I was in the earlier play of the dream, I realise that if this is really an emergency then I should be taking the car.
The dream rewinds and restarts with the call. This time I wear my trousers and keds, and take the car.
This rewind and replay dream continues with one additional practical observation and event added each time – grabbing an extra shawl, checking to see if I have enough money in my wallet, carrying Anna's medical files bag and his hospital go-to bag, and so on. Sometimes, I reach his house to find that he has passed away, sometimes I drive Anna to the hospital.
Three weeks of this, and I am just tired.
Then on 4 December morning, I am just about to have a shower, when I get a call from Alex (Anna's household help). He tells me that I need to come immediately. I hear voices in the background shouting, "Anna!.....Anna!”
I ask him what's happened. He tells me that Anna suddenly opened his eyes and his breathing is ragged and shallow. I quickly change into trousers, keds, check my wallet, grab a shawl, and drive down to his place.
When I reach there, they are still shouting, "Anna!.....Anna!”
He is sitting on a chair, slumped to the left. I see a sheen of white on his lips. I call out to him but get no response. I try to take his pulse at his wrist and his neck. I put my fingers under his nose to feel for his breath. My hands are shaking so much that I can't feel a thing!
Subconsciously, I know that his is going or gone, but my protective instincts have taken over.
I tell the attendant and Alex to put Anna into the wheelchair so that we can take him to the hospital. As they lift him into the wheelchair, he suddenly becomes limp. We wheel him to the car. Four of us try, with little success, to get Anna into the rear seat of the car, until finally, the attendant lifts him into both his arms so that Anna is sitting on his lap like a child.
As I drive to the hospital, I ask the attendant if Anna is breathing. He says, “No.” It takes me over 15 minutes to get to the hospital with what I think is my dead father in the rear seat of my car. I hold the steering wheel hard and blindly follow my mental chant, "Breathe deeply and drive” – over and over again.
At the hospital, Anna is loaded onto a stretcher and rushed into emergency. Four nurses and a doctor do a vital stats check and start emergency medical care. I hear a nurse tell the doctor that the oxygen (administered through his nostrils) is coming out of his mouth.
That’s when the tears start to fall. That is when my brain understands, really understands, that Anna is no more. My heart already knew.
In the end, his heart just gave up. It strikes me as odd, that I never realised that a disease that impairs muscular movement, could affect, would affect, the strongest muscle in the human body, the human heart. Thankfully it did. Swiftly and efficiently.
(After working in corporate India for over 29 years, Sangeeta had taken time off to look after her father, who was diagnosed with Parkinson’s disease in 2008. Sangeeta hopes that these authentic stories will help patients and caregivers understand and appreciate the impact of Parkinson’s disease. You can follow Sangeeta’s blog here)