Having a Grandpa with Alzheimer’s Disease

Photo by Kumiko Shimizu

[This is a more personal post, and a tiny bit sad!]

I spent the majority of my childhood with my grandparents.

My mother was a single parent who worked her butt off to provide for me and the rest of the family. So my grandparents stepped in to help her take care of me.

A day from my childhood was simple: eat food prepped by grandmother, watch TV while cuddling her, read books quietly by myself for hours, study for school, or just daydream and draw.

No matter what I was doing, my grandparents were always there for me with the presence of unconditional love and patience.

Grandpa at his 80th birthday in 2019

After I moved to North American at the age of 10, I became quite disconnected with them for the many years that followed. It wasn’t until I moved back to Hong Kong a few years ago, that I started to see them more regularly.

In the past few years, however, my grandfather’s mental health has been deteriorating. No one diagnosed him nor did the family push to do so, but after doing research and speaking to professionals, it seemed certain to me that he had Alzheimer’s disease.

Once the brightest man I know, my grandpa slowly became this deeply unhappy and disabled person.

He constantly throws tantrums, no longer gets out of bed, has trouble controlling his bowel movements, and just embodies so much negativity in general.

The last time I saw him was in 2019, a few months before the whole Coronavirus broke out. I did not realize how bad the situation was, until I observed him for a few days.

There was one moment when I sat by his bed and watched him. He had no expressions, movements or desires. My heart became heavy and my eyes started to water.

I could see the fear in his eyes. I could feel his confusion and negativity. His eyes showed lack of hope — from fear about his death, about losing what he was once most proud of: the youthful body of a man.

I stayed quiet and watched him in silent tears.

But he immediately sensed my emotions. His eyes gazed at me.

It’s okay… It’s okay,” He spoke gently.

But the sadness was just too much. I turned away so he wouldn’t have to see me cry.

I wish I didn’t. I wish I was strong enough to really connect with him in that moment. I wanted to let him know that I was there for him.

Mental health has never been an open topic of discussion in China, especially with the older generations.

Most people have little knowledge or understanding of it. They believe in “toughing things out”. The concepts of self-love and seeking help are extremely new. If you tell them you are seeing a therapist, they will probably think that you are mad. If you tell them mental health requires just as much work and maintenance like the physical one, they will think you are bananas.

In my family, no one really took my grandpa’s condition seriously until just recently due to worsened symptoms.

When I moved back a years ago, I noticed grandpa displayed more irrational emotions and behaviors. I researched on his symptoms and concluded that it was most likely Alzheimer’s. I sent these information to my mother.

My research and concerns, however, were like a drop of a needle in an ocean. My mother was not the one directly by grandpa’s side. My uncle and grandma were taking care of him. They absolutely did not consider his condition to be an actual disease. They told everyone that grandpa was intentionally trying to make things difficult. If he peed on the floor, he meant to do it just to piss them off.

Poor and mean communication is already a habit deeply rooted in the older generations of China. So when grandma and uncle thought grandpa was making these choices intentionally, they scolded him more.

Whenever I went back to visit them, I’d see how toxic the relationship is between my grandparents, and this would break my heart. But I could never really do anything — they‘ve been living like this for their entire life.

Here are a few events that happened within the past few years that demonstrated grandpa‘s transition into later stages of Alzheimer’s:

  1. Trouble Understanding Spatial Relationships
    One of the earliest signs I spotted was his difficultly in walking. He would take tiny steps and was scared to move in general. He had difficulties understanding spatial relationships and felt like he would trip and fall.
  2. Distrust in Others and Paranoia
    Grandpa believes that people will harm him. He believes that even the people taking care of him (including grandma) are trying to trap him to kill him. Once he ran out and actually called the cops. He told them that he was trapped and abused. When the cops came, my grandma was in shock and he immediately denied it all.
  3. Depression
    Grandpa no longer enjoys life or wants to live. He tried to kill himself once. Thankfully it was a very bad effort. He wrapped unplugged USB cables around both of his wrists, lied in bed and waited to die.
  4. Social Withdrawal
    He completely stopped socializing with anyone. He sometimes laugh for a few seconds when he saw familiar faces such as me or mother.
  5. Wandering and Confusion
    He would run out of the house randomly. When people found him he wouldn’t be able to explain what happened either.
  6. Irritability and Aggressiveness
    He throws tantrum all the time and is very aggressive.
  7. Loss of Inhibitions
    He can no longer control himself. He does not understand what behavior is appropriate or not anymore (including sexual inhibitions).
Grandpa in April 2020

All in all, grandpa is still relatively well now. He can still eat noodles by himself so that’s always good news. It’s certainly frustrating that I haven’t seen him in so long. And with the Coronavirus, it’s unlikely that I will get to do that soon.

I truly hope that he stays well. I want to spend more time with him, simply be there for him and treasure the time we have together when he is still alive.

Being in late 20s is slightly awkward. My writings focus on love, mental health and mindfulness through reflections and notes-taking.✨