Parkinsons and Alzheimers Personal Story

The most awful heartbreak in my life: Parkinson's and Alzheimer's

It has been a while but writing this is very important to me. While writing, I am going through the small memory boxes I created in my head and analyzing what I went through again. In this way, I can understand and forgive myself for what happened. This is a very haunting memory of mine which I just keep visiting to find a happy ending somehow. It is finally time for me to stop blaming myself and come to peace with it. Parkinson’s and Alzheimer’s deadly combination or separately is something you would not even wish on your worst enemy if you know what it is like. People who take care of them, and people who are affected, are all heroes. 

I was brought up by my maternal grandparents because my parents were in the military. Mom was a doctor, and she had a chamber after work. So, I stayed with my grandparents and saw my parents whenever they could come. Depends on where they would be posted. But mostly I would see them after a few months. This is just to give a slight understanding of my attachment to my grandparents. 

My grandpa was always there hyping me about anything I wanted to do. He had that confidence in me which I never had in myself but because of him, I would always think I could achieve anything. Any small achievement of mine, he would make a big deal out of it. I miss him, but it's not about death only, I started missing him while he was alive. 

Depression is real. I believe he was going through it. He was not able to handle aging well, and his family forced him to retire after his open-heart surgery. I believe the retirement with him losing muscles since he could not exercise much anymore, hit him hard. 

One summer I went to stay over with my parents for a few days. Both of them got posted in the same city as mine. We renovated the apartment and I beautifully decorated my room at my grandparents’. I did not know that was the last time I would ever stay in my room. I guess now after I lost everything again I learned life’s horrible but the sweet rule is to live as if that moment is the last.

Suddenly one day, my grandma called crying and was saying that my grandpa fell in the washroom. She had to break down the door and found him lying unconscious on the floor. They were taking him to the emergency where they put him in an intensive care unit. I did not know how to process that information, I guess I still do not. Before I could comprehend the gravity of the situation, I was hauled up in the car, and we were on the way to the hospital.

I remember praying a lot for his quick recovery. What I did not know is that he would not come out the same. Also what I remember now, is that he started to walk slower than his normal pace that summer. I started joking with him and said that he became so much slower than me. He was always much faster than me and would always tell me to catch up.

He also used to sometimes say that he is hearing loud sounds, or that some people are talking. All these, you see, we thought he might just either be paranoid or just hearing louder than usual. I guess, it is because people at that time were not so aware of mental health, especially my family. My day would start around 5.30 a.m. and I would head off to school at 7. After school, my grandma was busy accompanying me to various extra-curricular activities like playing lawn tennis. After getting back home around 8 p.m., I would study and go to bed at 12 a.m. All this while, we did not do much talking to each other. What we did not anticipate was that during all our busy schedules, the silence in the house, and the abrupt change of lifestyle after retirement would slowly poison my grandpa.

While waiting in the hospital, the doctor diagnosed him with Parkinson’s disease. I was too young to understand how serious of a disease it was, and how it would affect him and all of us. After my grandpa was discharged, my grandma decided to stay over at my parents' place until he gets better. Ah, that word “better”. Fate could not have laughed more at our thoughts.

My grandma left for the bank one day and I was alone with him. He was resting, but then he suddenly started repeating over and over again that he wants to go home. I kept consoling him and did not worry until he started saying things that did not make sense. It was as though he was living in his past. He started insisting on leaving and seemed inconsolable; started to walk around and get out of the door. Panicking, I called my grandma, and she told me to stay with him and not let him go. I still remember snapping at my grandma about how I could not do anything in this situation. Now all I feel is regret. The truth is none of us knew that he was also having Alzheimer’s. 

He sometimes would get out of reality and seemed to be living in his past. Some days passed and we took him to the doctor since there was no improvement. The doctor then diagnosed him with Alzheimer’s. Time was flying by, and no improvement. It was not a static thing either; some days he seemed better but then there were some days that would seem endless. 

I started grade 8; a whole year passed meanwhile. Like I said before, every day was different. Some days would start normally, but then it would not end the same way. Other days it would just be a breakdown for a few hours. I remember being confused. Till now, nothing makes sense. That’s how it was and is for me; a complete utter confusion. 

During this whole time, I missed him. He was the only person I actually talked to. There were some moments when it seemed like a normal old time and I would be so happy. His love for me was unconditional, I never felt pressured to do anything for him unlike how some parents make children feel. He was happy just because of my existence. After school, when I would go home, he would ask me how my day was, and not about my homework. He would notice if I was sad and would pry information out of me, and then cheer me up. I missed those moments dearly. What previously was a normal routine for me, became very unpredictable because some days I would get back home and he is in an unsettled state. I would say most of the days he was normal to what was awaiting us in the future.

We all started to notice his hand had some constant weird movement. Apparently, it is normal in this muscle degenerative disease like Parkinson’s. That meant it was accelerating. During the doctor's visit, he suggested we take him to Singapore. In January, we booked an appointment and went. Since he walked slowly at that point, I was pushing him in a wheelchair. You might think he was of an abject age; no, he was around 60 years old at that time.

My mother was pregnant, and she was so affected by her father’s illness. He was a very caring and affectionate father and grandfather. We went to a renowned specialist, he was sweet, he came out of his office and pushed my grandpa’s wheelchair into his office. I went in with my mom and grandma. Then he said something we were not ready for. Still, it echoes in my head. He said there is no cure, and said when both Alzheimer’s and Parkinson’s affect in an accelerating way, the patient may get around 2 years most likely. He said he wishes God does a miracle but apparently it already was a miracle that he was still there and a lot of times in his senses. My mom teared up and kept asking if we could try genetic engineering, but my grandpa was already fragile from open-heart surgery plus his age and would not be able to go through it. 

I remember shopping with him, me pushing him in the wheelchair. He was just not satisfied with his shoe purchase. Little did I know it would be my last shopping trip with him. We also visited the bird park because even in sickness, he tried to do it for me. I did not want to but he insisted on me. 

When we got back to our country, there was an improvement. The medicines seemed to be working. I completed grade 8, and mom was about to deliver. Things went horribly wrong. My mother had eclampsia after my sister was delivered. One moment we were happy, the next moment we suddenly heard that mom was having seizures in the monitoring room. God bless she was a bit under control afterward. 

My grandpa came to visit her in the hospital on her third day of being in the intensive care unit. That time, she had septicemia, and they wanted to use a ventilator. Hearing that my grandpa started walking around restlessly, he could not bear to see his daughter fighting for her life that way. It triggered his sickness even more.

We went home with a healthy baby and a healthy mom after 15 days. It was not a time when smartphones were a thing, so I did not have pictures. Neither did I have a habit of putting stories or posting anything on social media. At that time there were no Instagram or Facebook stories anyway. I wish though that I had more photos with him in day-to-day life and those times but unfortunately I do not. A small piece of advice, make memories of your close persons doing just daily work even if they get irritated because one day that’s all you will have left.

His disease escalated so bad that there was nothing there anymore. It hurt. It hurt so bad. He used to sometimes be normal as I mentioned before but that small little hope that made me look forward to every day was completely gone. It was just a downfall from there. I started feeling even more lonely. 

Started seeing even less of everyone, and grandma was just taking care of grandpa full time all by herself. It was sad to see her; she was tired all the time. She would let him lean on her and would help him go to the washroom. At that point, after mom was well, my grandpa could not walk properly anymore. His stance was always at a slant. He stopped making sense of his words. But it was nice to see what true love might be like. My grandma took care of him without any help, and she kept doing so without a hint of exhaustion. Must be nice to love and be loved like that. I noticed her a few times breaking into tears while praying or silent tears as she would remind him of a time without getting any proper response from him. Just wish we all got a different ending than what we were rushing towards.

I then fell into depression and only stayed in my room. Really can’t explain to you how it feels like. I felt all my hopes were lost, and I would never feel happy again. He was the only one I actually talked to, and who noticed if I was sick or sad. His absence and the hopeless feeling made me hit an all-time low in my life.  Even the closest people said things about my grandpa just because he was sick. I still remember it, just as fresh as it was, and would remember it. Let God do right by everyone.

I could not stay anymore. Everything, every alley, every place reminded me of the ghost of a happy memory that was once there. I used to be happy with my grandparents in my tiny little bubble. I really could not take it anymore. The situation at home was also not the best. His disease got the best of me, and I wanted it to go away. I could not bear him wasting away bit by bit. Each day passed by, and his eyes seemed to be even more lost. I could not bear it. My family started saying he might have gotten sick for me; mainly because my grandma was always busy with me and could not take care of him. 

The guilt was tearing me apart already and on top of that their blaming did not help. I cried so much. I cried so much. Every single night, I wet my pillow completely with my tears; at times I screamed, hiding my face in the pillow to muffle the sound. Nobody would have noticed anyway. It was not my fault, I always wanted to make my family happy. I assumed they would be happy if I stood first in every class, and be good in every activity; I tried to do that. But in the end, the blame broke me. I wanted to leave, and I wanted everybody to stop talking.

That was the only time when I thought of settling abroad. Everything reminded me of him, and I wanted a fresh start. I really wanted to leave so badly, I made issues and dropped out of school. My family did not take well to me breaking bad and kept me locked up at home. I was grounded from everything. After 5 months of complete isolation, I managed to convince them to let me sit for my O Levels. I signed up for the exams after 3 months of preparation. 

I was not worried about anything. I just showed up for exams. All I knew was that I needed to get out of there. Nothing seemed to get better. Somehow, I got 3A*s and 4As in one seating. I was not really happy because the person who would make a big deal out of this was just sick, and I would say like a vegetable, mostly on the bed. I started planning for the SAT, and after two months of preparation, my mom said she would not let me go. It took me quite a while to convince her, but she would only let me go if it was Malaysia. 

Unfortunately, during this whole planning thing, my mom and dad got posted in a secluded area for military service. I kept insisting not to let my grandpa have that horrible journey, but nobody would listen. So, with all bags and baggage, we arrived at our new abode. Initially, we had to stay in a military guesthouse until our house got fixed up. The forestry area did not do my grandpa well. He was coughing and seemed cold. One day I received a call that I got the Edexcel High Achievers Award. I traveled for that ceremony, though I missed another award. When I got home, I showed my grandpa the certificate and a mug that they gave. I kept telling him, but he was not even responding. I started whimpering and telling him. But he seemed to be lost; he seemed to be a ghost somewhere in between life and death.

Our house got fixed. The day we entered, my grandpa needed to get admitted. He got awfully sick. Nobody knew he would never set foot in any house ever again. Somehow, in the hospital, he seemed better. He seemed more himself and responded to us normally. You have no idea how it felt for me.

That forestry area did not have good doctors, and they kept insisting on a bone-marrow test or something because his fever kept coming back. Just because he was old, they kept complicating things when he just had a cold fever. Anyway, my grandma took my grandpa to the city in an ambulance. After they did the bone-marrow test, my grandpa became unwell. It took a toll on him, what with all that long journey, fighting a cold, and then the bone-marrow test. 

My mom told me we needed to leave and see him because he was unwell. When we arrived, he somehow seemed better again. It has been two days or so since our arrival. He wanted to eat mangoes. I could not spend much time with him, since I was expected to take care of my sister. For some reason, I could not also keep her in the hospital. I was so angry inside for that. My time to leave for Malaysia was coming nearer, and he seemed to be normal, so I wanted so badly to spend time. Then I kept telling myself, it is okay, hopefully after he gets discharged. 

Well, it never happened. There are some things I heard from people I cannot even mention. God knows all too well. Remember the mangoes he wanted to eat? On his last night, he choked on his mango and he passed away. Because he had Parkinson’s, the muscles in his throat would sometimes constrict. The doctor from Singapore mentioned that. It would require immediate aid. But my grandma was alone, and at that time, my father appointed a caretaker in the hospital who was awfully lofty. It should have been me you see? He took care of me, and I needed to do that, but instead, I had to take care of my sister who was 2 years old at that time. 

Anyway, I have to accept it was his time to go. It is just for the peace of my mind, I wanted to be there. I needed to be there actually. It is the least I could have done for him. My mom received a call from the hospital, and there it was the news. I could not cry, it seemed my eyes were just like a desert. I am crying now though, writing it. It feels slightly lighter on my chest sharing this. I did not cry for a while after that. It seemed confusing to me. The whole bloody thing was confusing and frustrating. Just like that, he was gone, and we buried him. I did not go to the burial, I could not bear it. I guess I was in denial. But I did see him before the burial, and he seemed at peace. Maybe at long last, after years, after taking in so much humiliation, and feeling like a burden, he was actually at peace. He told me that connecting with God is way more than a routine or time-tax payment of ritual. It is internal. I thank him for that. Because of God, I managed to be alive, and awake, and keep going on till now every single day. I just pray that once I am done with this life, I meet him at a garden, and tell him that I made it. 

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