Today I am writing after many years. I just feel like penning down my emotions. I lost my mom few days back. She was suffering with CBGD - a Parkinson’s variant. I knew she was drifting away and I might hear something like this one day, but I still was not prepared, it felt so sudden as I had just returned from India couple of weeks back. She was very weak and completely dependent but very much alive. In that trip I had some quiet time with her where I could hug her, kiss her, feel her touch, hear her talk - although sometimes it was not very clear, cracked jokes, laughed together and so many more memories. And 2 weeks later, she was gone. I wish I had known this before, if only I had I would have stayed back to support her. But that is life - unpredictable.
My mom got married at very young age and became mother of 2 at just 25. She lost her mother when she was in 8th grade. She used to say, she didn’t remember much of her mother’s active time. She only remembered her sick and laying on bed most of the time. She looked at her elder siblings for that motherly love and got that attention from them as well. She was very active in her school and college days and played a lot. She was captain of basketball team in her college. When she got married, she came to a completely different family, where the food was different, language was different and was a big joint family. She might have made lot of adjustments in her life, I can understand this better now.
After marriage she devoted all her life to her family, specially her kids. We were the center of everything for her. During the phase where my dad went through financial struggle, she stood by him. They made sure that we were not impacted by that struggle. They never compromised on our studies. She had to sell off all her jewelry and belongings. Fortunately the days turned back and both I and my brother got into good jobs, married and settled. Finally she was happy and enjoyed company of her kids and grandkids. She had a great social circle and was popular among friends and family.
But then she went through frequent falls, and was diagnosed with Parkinson’s. None of us had any idea what it was. During the initial stages of her disease, Covid hit the world, so I couldn’t even visit them initially. That was very first time that I had cried the most, listening to the struggles that they were facing and feeling most helpless. My dad stayed very strong during the tough health conditions in mom’s life.
She visited us in 2019 November. I realized she was not that active in that visit, but was still able to do all the work. 2020 Covid came and sometime in April or so we came to know she had Parkinson’s. Then in India, second wave of Covid came, and there was no help. Most difficult time, I still remember when I started crying, she mentioned nothing happened to me, don’t cry I am alright. So did my dad, they were all alone and I couldn’t even go to meet them. I visited them in 2021 and saw that she was able to walk holding someone’s hand. She was able to do things like scrolling on phone, playing simple card games, filling out the puzzle etc. I started visiting her every 4-5 months. I would extend that to 7-8 months, if my brother visited in between. In 2022, showed to many other doctors and consulted neurologists in US as well. That’s when we learned about that deep brain stimulation. When I visited in Jan/feb 2023, we spoke with Paresh Doshi from Jaslok. I still remember explaining to his assistant and taking appointment with him for when doctor and my brother were available. They took her to Bombay and that’s where we first learned about CBGD. Few more days of research and talking to different people followed and the very first time started loosing hope. Since then, I knew that this is going to get worse everyday and the most we can do is make her feel comfortable. By then left side of her body was completely rigid, and effects were seen on right too. She was no longer able to walk, but could still take few steps with help of 2 people, holding her from both sides. She still used to go to bathroom on wheelchair. Helpers would make her sit on wheelchair and take her to bathroom, but at least 2 helpers were required. She remained in that stage for sometime, she used to eat on her own by sitting on the wheelchair. Then she stopped sitting on wheelchair and started eating on couch. For eating roti and vegetables, she needed help but was able to eat bite sized food. Then she completely stopped eating on her own. Physiotherapist still used to make her walk. In my last visit though, she had lost control on urine. She was wearing diaper whole time and completely immobile. She started loosing her voice as well. I was really worried about next stage, which was inability to swallow, started looking at food pipe options as well in that visit. But somewhere was praying to God to end the suffering for her. I think God listened to my prayer and took her to peace. She was a fighter and I know wherever she is, she is happy. May God give her peace and happiness. She will always be there with me.
Mammy I love you and miss you a lot. I carry a part of you with me, all the time. I can see you in myself and I am so lucky to be your daughter.
