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| Anna on 27th Nov 2017 |
4th Dec 2017 11:05 am. Anna is declared dead.
Though, I knew the day was coming, and Anna & I had prepared ourselves for end-of-life, I wasn't really ready for it.
Though, I knew the day was coming, and Anna & I had prepared ourselves for 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 & 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."
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."
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 3 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 pajamas. Mentally I admonish myself. I can't walk outside my house in my pajamas!
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| Wearing my trousers and keds. I think I am probably the only person who calls "sneakers" keds |
The dream rewinds and restarts with the call. This time, I change into trousers. And walk a few meters 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 realize 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 & 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 & 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.
3 weeks of this, and I am just tired.
Then on 4th 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 mins 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 thru 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 realized 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.
The dream rewinds and restarts with the call. This time I wear my trousers & 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 & 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.
3 weeks of this, and I am just tired.
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.
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| Photo courtesy: www.bbc.com/news/health-19989167 |
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 thru 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 realized 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.
Very vivid description of a sorrowful event of a cheerful person.
ReplyDeleteThanks Uncle
DeleteSangeeta, I think my own breath paused at some point while reading this and unpaused as I reached the end. So much that you have experienced - and so much of this relationship that you have allowed us to get a glimpse of - I think there is a solidarity your writing builds. For the strength and emotional learning it brings to some of us - I hope our reading and thoughts, of and with you, bring comfort and strength to you too.
ReplyDeleteThanks Shikha. I definitely feel the love and care of all of you who read and respond to my stories of my father. And for all of that, I am grateful.
DeleteSangeeta eloquent and heart rending. Stay strong and be the daughter he wanted u to be.
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DeleteVery nicely written. I was you for a bit.
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DeleteTime will heal everything. My father passed away 6 years back but it is as vivid as if it were yesterday. My Dad died due to cancer and he stopped breathing. I missed his death by 5 Minutes. In some way I am glad I missed it. He was already in the hospital. I sympathize with you, just remember he is in a better place.
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DeleteThanks for sharing so generously.
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DeleteSo vivid, so true, such pain, and so much of stress... The emotional upheavals... How things happen, how one reacts... So real. I could feel myself there with you. You have been an amazing daughter to a great father. God bless you and him too.
ReplyDeleteThanks Pradyum 🙏
DeleteTake care
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DeleteSangeeta, I just recently got to know about your father's passing. I have no words. And at times like this, words cease to have meaning anyway. Much love and hugs...
ReplyDeleteThanks
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I just chanced upon your blog and started to read it .... could not stop before I finished all the posts in one sitting .... Its as thou you had penned down my thoughts and experiences of the past year and a half. .... I lost my dear father to PD , its been just over a month and the grief is still raw. Fortunately for my father,who had lived on for 24 years after my mother's passing, his battle with PD did not prolong and through most of it I was right by his side. How I wish I had read your caregiver tips and about the other symptoms when I was groping in the dark for some kind of a support group !!!! .... and not feel like I was the only one riding this boat with my father.
ReplyDeleteKnowing that my father is in a much better place now is giving me and my brother strength to move forward . God Bless you and your father too !!
Thank you, Sim Nok! Sorry to hear about your father. I do think that it is better than suffering with PD, specially when the disease has progressed to a stage where one can't do anything for themselves.
ReplyDeleteMany of my friends have asked that I continue to tell stories of my father, and I am not sure.
My husband was diagnosed with early onset Parkinson's disease at 57.his symptoms were shuffling of feet,slurred speech, low volume speech, degradation of hand writing, horrible driving skills, right arm held at 45 degree angle, things were tough for me, but now he finally free from the disease with the help of total cure from ULTIMATE LIFE CLINIC, he now walks properly and all symptoms has reversed, he had trouble with balance especially at night, getting into the shower and exiting it is difficult,getting into bed is also another thing he finds impossible.we had to find a better solution for his condition which has really helped him a lot,the biggest helped we had was ultimate life clinic they walked us through the proper steps,am highly recommended this www.ultimatelifeclinic.com to anyone who needs help.
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