Category Archives: FTD
I lost my father on Nov 21 last year. Till date, I avoid talking about him on any public forum. I just never felt the need. This was not something a conscious thing to do, I just never thought that anyone else was involved in my relationship with him. It was 1:1 and it only mine to talk with him, mourn for him just between two of us.
I realized, my father used to live my life through me. He lost his own father at the age of 6 and this created deep insecurities in him as he grew up. Although he looked at his elder brother as his father figure, he still felt the need to fill that vacuum in his life by over compensating a father’s role for his own son(me) and his daughter. His childhood was spent in his near poverty and he felt that self dependency was the most powerful statement a person could make.
That way, my father empowered me and my sister at the fundamental level. We were two individuals empowered by a thought that education and self-identity were critical to an individual’s existence. As we grew up, we were fashioning counter identities (opposed to our father) exactly as he wanted us to be. We almost did not choose any path, did not take any advice my father wanted us to take. We were looking for our own path, our own thoughts and our own destinies. Hardly, we realized, he took immense pride in the fact that in our rebel streak we were achieving what he always wanted us to achieve. Sadly, I could not realize this when my father was alive and that I am sure is also true for my sister.
I lost my father to an incurable disease called as Frontal Temporal Dementia (FTD). FTD can be considered akin to cancer of the brain where brain cells starts destroying themselves due to a faulty gene. A close cousin of Alzheimer, FTD however strikes people at young age. My father was just 56 when we discovered that he was suffering from such a disease and at 59 we had lost him. At 56 he was heading a workforce of 700 people and at 59 he did not knew how to conduct himself in a socially appropriate manner. FTD is especially cruel. It first kills your personality, your individuality, your behavior before killing you completely. It starts with destroying behavior controlling part of your brain, then proceeds to destroy your sense of emotions before affecting your brain functions that control your body organs. When my father eventually died, he had no sense of depth, hunger, distance. He could not focus even for 5 minutes on a task. The only time when I felt him completely alive, was when he gave me a hug.
FTD is cruel, but having a mental disease in India is especially nasty. Not only your friends, colleagues, employers misunderstand you, your own family takes a lot of time to realize that it is the disease that has altered your patient’s behavior. My mother till 6 months before my father passed away refused to understand that my father was going to certainly die in next 3 years and his behavior change were irrevocable. When the head of neurology at AIIMS Dr. Rashmi told my mother in no uncertain words that my father had just 3 years left as there was no cure available anywhere in the world, it only then dawned on her that how precious little time she had left with her partner of 33 years.
FTD is cruel but I saw how it brought the worst in the people around my father, largely by an ignorance but that is par for how Indians generally treat any kind of neurological/psychological disease patient anyways. After my father had more or less lost his ability of emotional or social judgement of a given situation, some of them took advantage of him. Did I say I feel a sense of pity/empathy for their lack of education/intelligence and how they proved themselves as lesser of human beings?
On a personal level, I always wanted to prove my father that I could be somebody, as he had this amazing capacity to get under my skin on my shortcomings. Now when I believe I am moderately successful to prove a point to my dad, he played foul by leaving me alone.
Papa, I miss you! You meant everything to me. You are my identity and reason for what I am today! I still want to have that last argument where I can prove how wrong you were to judge me. If you could just be back with me one more time.
But i would let go, I need to let go. My father is now at peace after his years of struggle with this devastating disease. I am sure he is watching us and would be proud of the way how we coped up during his last years and after he was gone. I am sure this is exactly how he would have wanted us to be.