In the Ring of Fire
Not very long ago, the word dementia was a word that always existed on the other side of the fence. Then one fine day, it stealthily sneaked in and took residence in my father’s mind. One day at a time, it started spreading its tentacles in his brain.
It took us a while to realize what was going on. We were looking at an incurable disease. Almost overnight, our entire lives had to be re-calibrated. It was a race to find out what we could do best here.
The challenge of a neurological disorder is getting the patient’s cooperation. It is a tough call because acceptance of the problem is not easy. So what do you do? One has to work and re-work strategies to get the treatment process started. Suddenly a senior citizen turns into a toddler filled with tantrums and mood swings.
It’s a journey where every family member turns into a caregiver almost instantly. You and Your life take a backseat. All this while the tentacles of the disease dig in deeper and deeper. The biggest challenge is that there is no specific care for dementia in our country. Even if there is, it is not affordable for all. And keeping our traditions in mind, institutionalization is no option. From a humane perspective, the biggest trauma is witnessing the withering effect. The most common things become uncommon and disconnected. You can only watch. Life becomes akin to a sand clock. It just slips away and you can't do a thing.
It’s a journey of sorts not only for the patient but also for the immediate caregiver. One needs to learn and unlearn a lot of things. You need to be both a teacher and a student. Every day for me is an emotional turmoil as I have to teach him to brush his teeth and use the washroom appropriately. Sometimes you have to read out the newspaper and show him how to use the remote control of the TV as well. At times I have seethed in frustration. While at other moments, I have cried myself to sleep. Caregiving is not for everyone. One needs to forget the past and accept the challenges of the moment. Logic does not hold good here at all times. I have had to learn to be both soft as clay and hard as steel as the situation warranted.
This journey is like being engulfed in flames, yet, you have to hold your ground. You will do a tightrope walk between sanity and insanity yourself. There is no other way out.
Dementia is like any other neurological disease and will leave telltale footprints in its path. One needs to recognize it. It began with hearing issues, lapses in concentration and memory, unconnected conversations and much more. One stunning observation from my father's case was the hoarding of things. It was phenomenal. He never realized how much he had done.
Caring for a dementia patient is like caring for a newborn child. Rarely will you have a peaceful night’s sleep. That’s the life of a caregiver. You have to accept it as you are in the ring of fire.