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.

Thursday, November 19, 2015


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.

Tuesday, November 17, 2015

The road within

Hello again, I am coming to the blog second time this week. I am on my journey to find myself again. This will be a different journey than last time. This journey does not seek to find happiness but this journey is for me to find myself through this world.

I am doing some really great work. Once a dream job, I have it now. Heading a business completely starting up from scratch, doing my favorite things while I'm at it. I have a great team of people to work along with. I have worked with wonderful people all my life, but I am finding this group of people so evolved and almost meditative, that it is just a great honor. They know me well. It's great to be known well.

Then you may ask, what am I looking for. Great work. Great people. What am I complaining for? I can't tell you what's missing. I myself don't know. I don't think it is more metaphysical than outwards. Spreading love, gratefulness and happiness around is great and being immersed in it is great too. Beyond a point, I can't think of it. It stops.

May be I want to travel. Yeah, I want to travel. I don't want a luxurious vacation. Meet an old friend in Manipur, when she faced floods. Go with a friend to Ghana, or just travel to Auroville in the neighborhood. It has been forever that I took a decent holiday for a week or two.

I want to join a music course. Learn violin! Play a melody at night before the world sleeps.

I want to do a yoga for a month in the Himalayas. More so combined with meditation. Like a yoga vacation.

Just small things I guess...But I don't have luxury for doing any one of them right now. I spent an hour with my mother today showing her old albums. It takes 5-10 minutes for her to register a picture that is right on her line of sight. It is slow but rewarding process.

I am tired to live with the burden of life, to see everything slipping away and not being able to do anything about it. I turn towards spirituality, gratitude and kindness. But I get some short term answers. I want to do the journey within, travel the road within, play the melody within and meditate long enough to fix myself.

Can you see what's wrong in a perfect life?