My Story : The unintended journey

Stroke.

A word that changed my life forever and threw me into a role that I was totally unprepared for – being a caregiver.

A brief history about myself. I am an only child. My father was a pharmacist and my mother, a nurse. Our life as a family was pretty simple and happy. We did things like other families did : going to church, weekend outings and what not. I did well in school and graduated as a chemical engineer. However, after a short stint as an engineer, I didn’t like the job. It wasn’t the right fit for me. I changed my path into the pharmaceutical industry and worked my way up to middle management. Finances was good and I decided to further on my studies while working. I took up MBA so that it would give me the extra edge to move on up the corporate ladder. Being single, I had the advantage of not having much to worry about.I had a certain lavish lifestyle which I enjoyed. My path was clear and I never once thought about the health of my parents.Why should I?  In my mind, they would always be there and enjoy my successes. They won’t fall terribly sick. They will live until they are a 100 years old. Naive thinking, indeed.

February 2009, everything changed. My mother suffered a stroke at home. Rushing her to the hospital in the middle of the night, sitting there in the emergency room, my mind blanked out. Her face drooped to one side and her speech slurred. She spent a week in the hospital with her blood pressure fluctuating.  The reality that I was facing slowly woke me up from that well planned career life that I had envisioned. Anxiety was keeping me up at nights. I tried reaching out to family and people that I knew for help. Lots of lip service and nothing else.Just disappointments. When she discharged and returned home, managing my career and handling mom with her nutrition and medication was not easy. Luckily, my father helped me out as much as possible at that time. We worked together as a team until she was well again and independent to go about her normal routine.The stressful months of getting her back to her feet made me realize that I have to re-evaluate my goals in life. Not too long after that, it was my father’s turn to suffer a stroke.

What am I to do?

This time, I had exams to sit for and work was piling on me. I was lucky in the sense that the neurologists that took care of both my parents were acquaintances of mine from work. So, as far as the medications and care in the hospital, I was not too worried. However, the stress was just too much to bear and depression took over. Adapting to sudden changes was never my strong hold. It brought on insomnia which could last for days at a stretch. It was great for finishing assignments, studying and preparing for work the next day but it was not too great health wise. I started going for therapy to treat my depression. I needed to get myself on my feet and face the fact that I am the sole caregiver and breadwinner for the family. A choice had to be made and there’s no turning back. Not an easy decision to make at all. I lived in denial, thinking that I am just over doing and over thinking things. I kept saying that this too shall pass.

Then in February 2010, God showed me that it was time to make a choice and stick to it. Life is going to change from this point onward. My mother suffered her second stroke and this time she lost her ability to use her right hand.

My choice…

I left my lucrative job and started working in job that gave more flexibility for me to be there for my parents and more money too. One thing that hit me terribly was the finances. My parents didn’t have any health insurance. What my father had, he lapsed payment. So, that was of no use. The blessing of healthcare in Malaysia is being senior citizens, they get free medication and treatment from the government hospitals. The only drawback was the waiting time, which at times takes the whole day. Being the sole breadwinner of the family meant managing all sorts of expenses. My dad’s pharmacy did not do well and therefore, he had no savings left. This meant a total change in my lifestyle, no more Starbucks and holidays!. It was tough on everyone. Somehow, we managed and for the next 5 years, life went on like this. Work and hospital visits were the only thing going on for me. Occasionally, some lovely souls would come by the house just to break the monotony. In all this, I never even noticed that early onset of dementia had set in for my mom. Doctors told me later that this could be due to the stroke. This meant more hospital visits and pills. It did not look like it is going to get better anytime soon. I would joke and say that I am a mother to a son and a daughter. The reality was that I was lonely and just angry all the time. I didn’t deserve this. Ladies, my age, were having a family and moving up in their life. I was stuck in this rut.

Turning point

My personal life was going no where as well. The men I went out with, were intimidated with the kind of responsibility that I was carrying. Almost everyone shunned me away except one. Looking back now, it was a good thing. My husband is the only one that saw this ” burden” as the most attractive trait in me and he was keen to be a part of my life.  Initially, I was skeptical of his intentions but he proved me wrong. What made our relationship even more special was we had a long distance relationship (he is from India and I am from Malaysia). He would call daily at night on Skype just to talk to, not so much me, but my mother. He had built such a good rapport with mom that anyone would have thought that he was her son. Finally, some happiness.

Unfortunately, my world shook again in 2013.

My father had his second stroke in September 2013 which made him paralyzed from the waist down. He laid in the hospital for one month. I didn’t know how I was going to take care of him when he returned home. I had a mom with dementia and now my father, paralyzed. I just tendered in my resignation and decided to look for anything which was part time or something that I could work from home. I took full control of the household and my parents. It wasn’t easy to manage my father. On top of his stroke, his left leg had diabetic ulcer which required daily dressing. I did the dressing, something which I learnt along the way. A month later, my mom suffered a debilitating stroke which took away her ability to speak and read. She even couldn’t recognize letters or write. Communication was a challenge. My husband (at that time, my boyfriend) came over to Malaysia to assist me. It was an overwhelming situation. I had to keep a watch out on my mother because she easily loses her balance. I used to bathe her and help her out from the bathroom. I had an intense fear of her falling down and breaking her bones. If that  had happened, she would not be able to tell me anything. She behaved like a toddler. I did my best to give my care to both of them, but it always seemed inadequate. I spent more time with my mother. Although she couldn’t speak but she had a sense of life in her. She wanted to live and she was getting better. She was not the most compliant in taking her medication, but she made caring for her a breeze. I had every confidence that she will conquer it all so, I didn’t anticipate what happened next.

3rd of January 2014, my mother left this world peacefully in her sleep. Her departure hit me like a ton of bricks. Totally unexpected. My world went blank. I couldn’t grief because I still had my father. I just had to function, for his sake, as before but physically, my body was tired and I felt terribly ill. Finally, I decided to look for a nursing home or an assisted living center for him. In all these years, I never once stopped to look after myself. It affected my health badly.  I had to get over my guilt of sending him to a nursing home and think of my own health.

Now, my father is in a much better state and happy. He has friends to talk to and he actually looks much younger now. What I had experienced made me realise that we are not prepared in being caregivers to our elders simply because most of us may not have experience this with our grandparents.

I hope that my personal story of my journey would be able to inspire you and give you the encouragement in caring for your elderly. Always remember this. You are not alone! There are many who are like you too.