It can be difficult seeing a loved one lose it all and lay with limited strength. Well, this is the story of my dad. A smart, caring, humorous, fun and energetic person, he was everything you could ask for in a dad. I remember him being everyone’s go to person. From patiently ironing our school uniform to guiding and supporting us in every aspect of our lives, he was and is indeed the perfect dad.
How it all started
What started as a loss of smell and a minor tremor in one limb was soon diagnosed as Parkinson’s. I remember me and mother breaking down at the news. He, however, took the news very lightly and fought against everything to eat healthy and keep himself busy and fit. Things were never easy for him, from being bullied at work due to slowness and shuffling gait to losing friends due to impaired speech, he suffered silently.
The emotional battle
Things changed once he retired, having to spend more time at home played with his mind and constant hallucinations (drug-induced apparently) made him growingly anxious. Having being diagnosed for over 15 years, it seemed like he lost an ability every single year – once it was writing legibly then it was driving and so on. Things got difficult when he started having delusions and feared for his safety. He would often walk to people and tell he is under threat, someone has placed a chip in his brain, put a worm in his ear, be found sitting in the balcony fearing ‘GHOSTS’ in the house etc. It was an emotional battle for us as we delved in a constant state of helplessness against his growing suspicion of everyone at home.
My mother, a government employee with a successful career, on retirement, had to move to their house in Gurgaon. The change didn’t come easy. My dad apparently till date (it’s been 2 years since we moved here) believes he is held captive in an office and being asked to do chores. To the extent, he has run away from home on several occasions, only to be found telling strangers about his plight of being held captive by a family. With every consultation, his antipsychotics went up making him sleep the entire day and be active only for a few hours which we utilized to feed him or wash him up.
The pandemic situation
The pandemic made it all the more difficult to manage his situation and upped his antipsychotics to bind him at home. Given an ultimatum by the doctor on his condition, we decided on the deep brain stimulation last August. His psychosis by then was so bad that he held the doctor’s hand during the surgery and tried to attack a nurse who was administrating his dose of medicine. We, however, got the surgery done without any complications. His medicine dosage went from 8 tablets a day to 1/4th a day. We could and continue to see the withdrawal symptoms, even though he is still on antipsychotics.
His present state
Presently he is having incoherent speech, limited activity, weakness and is dependent on my mom for motion/bath etc. and severely constipated. Since speech is an issue now, we do not have a clear picture of what he experiences. From a person who used to manage his own medication and visit the doctor himself about 6 years ago to a person who is dependent on my mother for even changing sides on the bed, things have drastically taken ugly turns. We continue to lift each other’s spirit in the hope he would get better in a few months and we will see some ray of light.
With the surgery, even though his medicines have drastically gone down, we are far from seeing significant improvement.
With neurological disorders, every case is unique and finding answers on Google doesn’t come easy. If you have a similar experience or know someone who does, get in touch. Sometimes the caregivers need more care than the patients themselves. We will be happy to share our experience in detail with you, after all, that’s all we can do.