Dementia: an Early Goodbye

My mother was an actress her whole life. She was a strong woman who took care of herself and her family. She was caring and compassionate, loved by all those around her. I had a strong emotional bond with her, growing up with her in the States, just the two of us. We shared many memories. Though she relied on me as both a daughter and a husband figure, we still made it through. A few years back, she started suffering from an illness that cannot be named or proven by doctors to this day. We don’t know what exactly is wrong with her, even through multiple check-ups and thousands of dollars spent on useless medication and therapy. What we do know is that the symptoms of her illness resemble Alzheimer’s and Parkinson’s disease, though her MRI and CT scans prove otherwise.

Just 3 or 4 years ago, my mom started tripping and falling on stage. Her coworkers and our family thought that these were merely a few mistakes– that she had started to lose her eyesight due to old age. When things started getting worse, she would fall down flights of stairs and even refuse to walk around in the house due to her dizziness. Things escalated quickly, and our whole family was struggling to adapt to the changes that were happening.

Me and my dad had an awkward relationship growing up. My mom’s illness caused us to bond in a way that we had never before, and pushed us to our limits both financially and emotionally. We missed her, the wife and mother who was ever so strong– the person who would share her passion for acting, the woman who had gone so far to live her life to the fullest, the mother who would do anything to give her daughter a chance, all gone.

The saddest part of dementia is that my mom no longer resembles the person I loved most dearly. The memories I have of her get fainter every day. Most people would think that this is too harsh, especially in the cultural background where I come from. But every time I look into my mom’s lifeless eyes, it kills me a little bit inside. She remembers very little about recent happenings, my graduation, my first post-graduate job, my boyfriend of 3 years, the pets we had together… My dad and I have started to acknowledge that we may never have her back. We still love her nonetheless, but this love is a different type of love that requires much more patience, much more empathy, and much more responsibility.

The family has changed so much since my mom’s illness. We have a different bond now, somehow stronger and so fragile at the same time. It has triggered me to become vulnerable in everyday situations, and every time I am reminded of my family– tears come to my eyes. I have never known heart-wrenching pain until now. Now, every weekend I visit my parents’ house, I feel a sickening, heart-wrenching pain that I cannot even describe in words.

I have grown a bit accustomed to this lifestyle now, saying my goodbyes every time I think of her. But even still, our family is in a process of denial– I think. We still hope sometimes that she will one day miraculously recover from all her illnesses. That she will start to walk, have regular conversations, eat dinner with us at the dining table, and hold us in her arms, telling us that we have done so much for her and that she will be okay from now. The toll that dementia has on its patients is hard enough as it is, but the pain the caregivers and family members go through is a pain that those who have only heard of can hardly fathom. I plan on keeping a log of these events, as I know one day that this too will be a precious memory for me.

For all the caregivers out there, let’s stay strong. Have our breakdowns and tantrums, but get back up knowing that some part of what we miss so dearly is still somewhere deep inside. It sucks to have to say goodbye to someone who is still very much alive. But I keep wanting to believe that every moment is a precious one, despite the sadness and frustration.

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