Monday, May 2, 2016

the speaking life

My brain says, "No one should be going through this". 10 years ago, my father suffered from paralysis. I was still in college, my younger sister still in school and my elder sister building her career.  The local doctor didn't put the medicine that could have reversed the stroke. With that, a fate of the family was written.

A family of three daughters, all engineers, bright and promising. A mother who took charge of taking the best care of her husband but got trapped in the more severe disease of Alzheimer's , a very early onset for her age. Since then, the health of parents became a constant anxiety, a guilt that we are not doing enough as daughters, an interior struggle of still trying to find a life of normal women in 20s. But in an illness that lasted for 10 years now and reaching its end, nothing is normal.

There is anger and resentment. I am pissed at the universe. For not giving me normal life. For making me go through suffering of parents and all the craziness and brokenness that comes with it. I kept finding answers, in people I dated, in the actions of my sisters and people I looked upon, in the textbooks of spirituality. But the anger has grown that I was dealt a bad hand. 

Every person I know has a similar story. Something made them a part of tornado they could not escape from. Something killed their potential. Poverty, conservative parents, divorce, being orphaned at early age, being separated from wife, troubling in-laws, heartbreaks, empty marriages, being dominated upon by spouses, being abandoned by a lover. I see their suffering similar to mine. I have no answers to give them. I have  one answer to give myself - that life was not supposed to be scarred this badly. The world needs healing like I do.

I sometime wonder that may be I am going through depression and I should seek help as I can't find happiness inside. But I am merely looking to find answers of these sufferings. How to live? Budhha found something by going within, found the answers to those suffering. No book on happiness and overcoming suffering gave me hope as much as the idea of going within does. No conversation could help me heal the way more than the idea of finding the healing within does.

My mother is at death bed. She has a weak throat which an old belief calls death threat. She has lived the life of love and duty. But she suffered too. In her current situation, she sleeps most of the day. But when she is up, she looks at the ceiling, waiting for her answer, I don't know the mystery of the soul. How much the soul has been left when there is no brain? If her soul is left, then is she troubled by suffering? What will happen in her next life?

I am waiting for her death too now. For her suffering to end. We three sisters spoke to the doctor about minimizing her suffering so that she can go peacefully, without pain and struggle, without gasping for breath, without the physical suffering of IVs and needles, 

Standing on face of death of another parent, in two years time, I can't help but think that the life I am building for myself is a life that will meet its end no differently. I need to go within, to find the voice of self that has been suffocated in the midst of finding external happiness while surrounded by so much suffering. 

My brain no longer sees happy people. I only see suffering. I have filtered out that happy people can actually exist. I see instances of escapes of suffering, by traveling around the world, by getting married, by having poker nights or a shopping weekend. I don't see authentic happiness, may be pursuit of it.

I am drawn to the idea of Budhha more than ever before, to a point where I want to walk on that path as soon as my mother meets her maker. I want to disappear within to find authenticity, in my own darkness. I will step out of it by stepping in within, soon.

Sunday, April 10, 2016

Living with Dementia

A leaking urine bag, thats how i started my Sunday, urine all over the floor. She almost threw up the liquid oatmeal out of her mouth. She could recognize my repeated calling of her name but she couldnt determine where that voice was coming from.

Have you ever thought that it is a complex brain function to sense a direction of a voice and turn around your face in that direction? My mother cant do any of these.

She cant eat, pass urine or motion, or even locate me while I am in right front of her eyes. But when she does, even for a split second, she looks at me with a smile. She recognizes me. As if life comes back in her.

it has been reported that Alzheimer is the most expensive disease in the world. More than cancer and cardiac arrest. No insuarnace company covers the cost for a caretaker at home. Families have to pay from their own pocket. In Hyderabad, i have to rely on some unprofessional agencies to keep supplying me nurses. I have two of them right now. When one goes on leave, i have to take off from work and stay at home. I am in hospital for tests almost 3 times a week. And i often start my Sunday dreading hospital again. The caretakers live worse life than me. They dont know when my mother may pass motion. She cant convey that anymore. They have to clean up everytime. Adult diapers are not enough.

My mother was once a charming lady of a small town where we lived. She was popular and famous for one of our kind house, for her singing skills and for being kind. She will go for morning walks and cook delicious food and invite families for dinner. She is just 56 right now. Early onset of dementia 7 years ago has almost led her to the life of suffering in the end.

Why would you suffer like this in the end if you lived a life of good karma?  I search for answers in Buddhist philosphies, in medical sciences, in Atul Gawande' books. But mostly, i try to escape. I dont want to accept and confront her reality of pain and suffering and my own reality of a caregiver of a dementia patient. Of being a daughter who cant recognize her mother more than merely a familiar face.

My mother still has some indestructible in her. I see it. I dont what she sees in me. An escapist behind the guard of busyness of work, social obligations, partying, movies or she sees a helpless daughter behind it? I dont know how will she remember me. Every week I contemplate to be with her, to face this reality of mortality than to escape it. But rationality says, go to work, live your life, you cant give up working or living your life. Whats my life? Isint the one I am escaping from? My destiny chose me to be by mother's side.

I dont remember how she was. My mother is already almost gone except for split seconds of those smiles. I am at the unknown threshold where life goes away but death doesnt come. I will have to cross this threshold one day. But how much suffering will come before that?

Friday, December 18, 2015

The new times

So, my sister got married in most awesome ways ever and my mum is serene these days. Thank you everyone for your lovely messages.

Solitude has embraced me again. And i love it. Since last few days I am finding some peace. Someone prayed somewhere. Or healing has begun. I have zest for doing new things now suddenly when I am freed up from the pressure of wedding and mom's hospital. December so far has been sweet.

I have started reading Henry David Thoreau's Walden lately. I loved the bites that connect to me sometimes. He lived in solitude for 2 years, 2 months and 2 days. I wonder how will that be like. It will give enough time to evaluate your thoughts, your actions and develop awareness like never before. And when I read Walden that's the feeling I get that his self-evaluated conversations with himself became his guiding light.

We had an overnight conversation during my sister's wedding- a group of friends at a Goa's beach sat down in a circle of sorts. And it was just such a beautiful conversation. Everybody opened up. We talked about love, what matters most, friendship, partiotism, gratitude - all the vital emotions that we go through. We all felt connected. And each one of us could feel that.

I am at Work and writing this blog first thing in morning. Hoping a good end to the year.

Love. Laughter and Peace.
Saloni

Thursday, November 19, 2015

Breathe

I am writing from the hospital today. My mom got two seizures this morning. The dementia patients get that in later stage. But we just thought to have her admitted instead of thinking this is the normal course. So the doc chose a different med and conducted more tests.

What a life. And what depressing thoughts you get in the hospital. How will she die? How will I die? Who will be beside me when I die? Will i recognize them? My mom doesn't.

Have you heard about samadhi all the saint achieve? How cool a death that than dying in a stupid hospital.

Dementia is a hard disease to die with, harder than a cardiac stroke. The slow death, the confusion, the immobility, the incapability to understand anything, inability to say what you want to say. It makes you blind, mute and paralytic. As if the soul is leaving slowly, identity is lost. And some traces are there. That too slowly getting lost.

Doctors choose to live life wierdly. Kissing the fact of death every day. Caretakers of patients go through so much struggle. Even the most expensive hospitals are inefficient. Poorly designed usually. Making caretakers run around from one building to another, making them feel ousted. I watched a movie long ago in which the doctor is asked, "why do they have visitng hours? Doesn't it help the patient to be visited?"


We have a wedding in the house. My younger sister is getting marrief. So we doing all that halla gulla and then we have our mum on the other hand, almost at the last stage of her disease. Sometimes i'm scared that my mum doesnt go away without seeing my sister's wedding. How will she get married if that happens? Can't afford to worry the tragedies that my mind keeps creating. It always imagines the worst. The situations have made me pessimistic or my pessimism is my natural weakness. I am not sure

I meditated today. For 20 minutes. I have taken up that challenge of meditating for 21 days. They say it changes the circuits of the brain if you do everyday for just 20 minutes. And the effect kicks in within 21 days. Make. Beleive.

I am thinking of what will i do once my mum goes away. I think i will feel a big vaccuum and i probably will have no idea of what to do with my life.

I am currently managing a house with 2 caretakers, 1 cook and 1 cleaning lady. My sister leaves after getting married. Whenever my mom leaves, there will be need of no people in the house.  It will be a huge vaccuum. Wandering too much

Back to the present. A sofa in the hospital. And everyone around still. Breathe.