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?