To have a child with special needs is a painful experience, but to have your parent become a child with special needs is an excruciating experience. I know because I live through this torment daily – my mom suffers from senile dementia.
For all of us our earliest role models (good or bad) are our parents. We are to quite an extent a product of our parent’s influence on our early formative years and the values they gave us while we were growing up. My mother has always been the strongest influence on my life; it was she who taught me to stick with my principles even at the cost of lost opportunity. It was she who insisted that I become an independent and strong person who did not have to rely on anyone to survive. It was my mother who gave me the resilience to fight all odds and win. When I look back I remember a very proud, strong, independent woman with high morals and strong principles. But today that woman does not exist.
When people think of dementia they usually think of Alzheimer’s, but my mother suffers from a form of dementia in which she loses track of time so things which happened 3 years ago she will insist happened this afternoon. She sometimes cannot differentiate between the real and the imagined, so if she has been thinking of something or had a dream she will consider it an actual event. She has become extremely paranoid so other than me, she thinks that everyone is her enemy, her anger levels have also risen considerably so that if one corrects her on anything she goes off the handle. In short her entire personality has been distorted.
She is no longer my mother, the woman who taught me to be me. She is a child who is spoilt, petulant, stubborn, will lie compulsively without even realizing what she is doing and clings to me for survival. I am living with a stranger who looks like my mother, but there the resemblance ends. She is a stranger.
However, amongst all her convoluted thoughts and emotional see-saws, one thing remains constant, something that neither time, nor mental disease can take away, and that’s her love for me. Perhaps its this love which because of her condition takes on the form of paranoia and the need to cling to me. And its this love which keeps our relationship together.
I am an only child – a fact that I was extremely proud of by-the-way when I was young. I just could not imagine a life where I had to share my parents with anyone. But now that very fact which made me feel so special at one time has become the shackle I cannot nor want to break free from. At times I do wish there was someone else who could take care of her or some facility where I could check her in for a short period so that I could recharge my fraying nerves, but alas no such facility exists in this country. There are appalling old people’s homes where people are sent to wait for their death, by children who no longer want them. But I want her, she is all that I have, once she is gone there isn’t a single relationship left in my life that I can call my own – I have absolutely no other family ( no, no, this is not a line meant for sympathy it’s the truth and I’m absolutely OK with it). My mother is not merely my mother anymore, she is also my child.
In our country perhaps the people who have the worst deal belong to the urban middle class. The rich can afford to solve their little life issues and the poor – well they are usually so far pushed in a corner that they don’t really care, survival becomes the prime operative in their lives. But the urban middle class, people like me who are educated professionals have a strong sense of ethics and we are always concerned about our reputations, we are always conscious of the kind of approval or disapproval our actions will draw from our social circles.
A lot is done for the poor, nothing is done for the middle class. Why don’t we have retirement facilities or places which are retreats for the elderly, where they can be taken care of when their children need to travel for work, or when their children simply need to take a short break?
I am not saying that I find my mother a burden – no not at all, she is at the moment my sole purpose for existence and the connection of love is perhaps stronger than ever between us. However even when I have to travel for business it beomes a huge crises which leaves me completely drained. I have to travel this month for a week on business but I am panicking about what I will do, who will take care of her? She will not allow any nurse in the house that will trigger off another episode.
Everyone needs a break, a few moments where they can be with themselves, a few moments where they can forget their responsibilities, a few moments where life shimmers with the possibilities of what can be rather than the harshness of the reality of what is.