I feel cold. It feels dark. I wish I could feel what my grandmother feels. It terrifies me.

This picture is dear to my heart. The photo was taken on my grandmother’s birthday. She’s blowing the candles.

I was elsewhere. I was not there.

In the photo, she smiles. The face glows. The joy of a grandmother hits differently. When I see her smiling, it is heartwarming. Yet the picture hides. It hides a bloody detail. The story of a person with dementia.

Living with Dementia

I am closer to my nana now. I think she needs the support of the people she trusts. I have unconditional love for her. And I will always have.

I wonder what living with dementia feels like. I ask myself questions, trying to clarify my thoughts.

Is she fighting a disease? My grandfather fought with cancer. I saw him before he passed. He fought with every energy to remain near what he built and his family. His mentality was a fighter mentality. My nana doesn’t seem to be putting up a fight. She doesn’t even perceive her condition. Her opponent? She reminds me to write it down, or I will forget what she told me. Other times, she tries to remember what day it is by circling the number on the calendar she has on the wall. She keeps forgetting what month it is. It looks like an empty arena. No fight in sight.

Unanswered questions shine pitch-black dark everywhere. It feels like trying to exit an ever-changing maze.

I stopped asking logical questions. Bothering to reason logically hurts. It is not emotionally relatable. I cannot feel what forgetfulness feels like. Dark surrounds me. It is suffocating. Unable to shine a light on the unknown. Not understanding.

Cold soon comes when I realize I will lose her to dementia.

Hope

At times, I see her happy and unbothered. She seems present, enjoying the moment. Other times, her face shows the signs of time. Life feels heavy. The eyes barely want to focus on something. She seems absorbed by something worrying.

It is not easy to understand what is going on inside her. Trying feels like getting a stab. A stab leaving an empty wound.

The worrying picture gives me hope. It captures a wonderful moment. It portrays a life worth living. She keeps her dignity. From my perspective, the sheer act of living a happy life requires courage. The struggles of someone living with dementia are incomprehensible. My grandmother can enjoy her life. As long as she can be joyful, I will stay strong.

Fear

A fascinating pattern occurs when you visit nursing homes. People with mileage appreciate the company. They smile at people. They care little about things. Sometimes, not even food is that appealing. Yet they always smile at nurses or family members visiting. Grannies with dementia seem to have the biggest smiles. I believe it is because they forget the last time a family member visited. The time confusion seems meaningless when relatives visit. The joy is pervasive, and they genuinely show the biggest smiles.

That is a sand castle. Doomed.

Frail foundations cannot sustain this type of happiness. Elders smile because they recognize their loved ones. Yet, the memory is fading away. They are powerless. They would hold faces in their hearts if they could. Sadly, everything slips. It is beyond the control of family members. No one can interfere with this depressing fading. My worst fear is Nana not recognizing me anymore.

Happiness and Dementia

I wonder whether memory is needed to be happy. Otherwise, happiness would be a mere reaction to a stimulus. Exploring this topic will be depressing and exciting at the same time. Potentially fascinating results are waiting on the other side.

I Love You

I suspect what’s coming. I hope time will be lenient. Helplessness feelings are anxiety-inducing.

Nana, I will forever walk with you hand in hand. Please, never feel responsible for my helpless feelings.

A life spent caring for others will never be forgotten. I love you.