I lost my mom on January 20, 2020.
“Ma, I’m home. What are you doing?”
“I’m making coffee.”
“Why are you making coffee?”
“I always make coffee in the morning. Why are you up so early?”
“It’s 9 o’clock at night, ma...”
This was the beginning of her passing.
Be careful what you wish for
I used to imagine how I would feel if Ma had died. I thought that if I felt the pain of her passing often enough, I could prepare myself for the inevitable. But these rehearsals didn’t diminish the pain. I could never get used to it.
So I wished that I would outlive her. Because I want to take on the pain of losing her, rather than the other way around. I don’t want her to suffer. I wished that she will die happy and without any suffering.
Now, I don’t know if I had wished this too hard. So hard that she got vascular dementia. If this disease progresses as it would, she definitely won’t suffer my passing because she wouldn’t know me by then.
On less emotional days, I wonder if I could have done more to have prevented this from happening? The doctor said that she had multiple teeny-tiny strokes which affected the memory areas of her brain. Did I not heed the signs? She was disorientated at a clinic about 5 months before her diagnosis. I had to get her from the police station. But that only happened once, and there had been no other incidents.
Could I have done more in monitoring her medicine-taking routine? I was too happy and proud that she had her own system of taking her pills for high blood pressure and heart health. She even monitored her blood pressure twice a day and recorded them in a notebook. She also rode the stationary exercise bike every day. Maybe she missed doses. Maybe she over exerted herself on the bike.
It doesn’t matter now. My regret is that I should have been more aware of the #YOLO mantra. For I had dreams of bringing her to see the world.
My hold is slipping
Now, when I imagine how I would feel when Ma is gone, the pain is less intense than before she was diagnosed with dementia. I’m surprised. And feeling guilty.
Am I unconsciously tired of taking care of her? Is she dead to me already? 😱 Or am I giving in to platitudes like what this neighbour was spouting:
“Haven’t seen your mom in a while, how is she?”
“She has dementia and is not very mobile now. With the COVID situation, she’s at home most of the time.”
“Oh. I remember she used to walk to the supermarket and would stop to talk to everyone.”
“Yah. I don’t know if she would remember you now.”
“It’s OK. How old is she anyway?”
“She’s 93.”
“Oh! She’s so old already, no wonder she got dementia. You’re taking care of her, right? At her age, she’s had a good life already.”
Arghh! Why do people seem to think that dementia is a ‘natural’ part of old age? She made it sound like it’s just like a memory loss — like forgetting where you placed your keys. And she spoke as if Ma’s dead already. Perhaps she’s projecting her acceptance that we age, deteriorate, and die. I know that Chinese calls funerals for centenarians 喜丧 (auspicious passing). Like a “up yours, death!”. In fact, you won’t even need to live to a 100. 97 will do. For Chinese funerals, 3 years are added to the deceased’s age — one year each to signify heaven, earth, and human age. Because Chinese believes that a person is one year old the moment they are born.
Nowadays, whenever I confront a new behaviour in Ma, I’m scared of what I’m capable of thinking and imagining. It’s hard to face up to my feelings. Even if I suspect that I’ve become emotionally mature to let go instead of hold on, I’m not proud of it. I don’t want to be tactical in dealing with her behaviour. I want to continue to feel for her, even if she’s unable to feel for anybody else now.
People don’t change
Someone said, “People never change. They just become more of who they really are.”
17 months on from that night, she is sweeter and cuter than ever. Becoming more of whom she has always been. She’s hardly ever angry or frustrated. Even when she struggles to remember my name or tries to tell me what she wants, she would only frown and heave a big sigh of defeat. I try to relieve her by completing her sentences.
I realised there is no point in trying to convince her through facts. It just confuses her more. Like the time when she insisted that she had a pot of rice on the kitchen stove and asked me to reheat it. I brought her to the stove to show her that there wasn’t any. She searched the cupboards, the fridge and even asked me to look under the bed. After some time, I told her that my sister had brought it to the office for lunch. That’s how you ‘play along’ with her new reality.
This was something I learnt from the Facebook group Molly’s Movement. It was started by Joey Daley when he started documenting his mom’s journey through dementia. Episode #6 hit me the hardest as it was the first time that Joey’s mom, Molly, did not recognise him. At that time, I wondered when I would experience the same thing. And how I would feel when it happened.
It has already happened a few times. Ma’s at the stage where I can still dismiss her forgetfulness of my name as a memory slip. I know she would recognise me when I interact with her next. But how long do I still have to ‘play along’ with my reality?
Keep telling yourself that
Writer Courtney Summers said in Sadie, “People never change. They just become better at hiding who they really are.” I look at Ma now and wonder if she’s just hiding what she doesn’t know and playing along with me. This also reminds me of the novel Still Alice by neuroscientist Lisa Genova. Alice, the protagonist, could hide her signs of dementia because she was a smart, intelligent person.
I comfort myself by thinking that she’s still comfortable with me. Even though I may be a stranger to her at those times. Maybe we’re all programmed to feel kindness, love, compassion, and empathy. Perhaps that’s why even at times when she doesn’t know me, she is still open to me and does not feel a need to protect herself or be afraid of me.
Creating new memories
Ma sleeps almost the whole day now. She doesn’t watch TV or get on the exercise bike anymore. She has stopped measuring her own blood pressure and does not get on the exercise bike or do pliés by the window anymore.
“What is that noise?” she would react when I tried to jolt her memory with her favourites — ABBA, Teresa Teng, and Celine Dion. She has become physically weaker and often asks if she has eaten. She doesn’t disbelieve us when we tell her that she has. She just says, “OK. I forgot.” She doesn’t seem to be suffering from the death of her old self. She seems to be transitioning into another version of herself.
Even her taste has changed. She never used to eat cheese or milk. Now she eats pizza and McDonald’s Fillet-O-Fish with tartar sauce. And mayonnaise, corn flakes with full-cream milk.
Though it’s harder to engage her now, I still try to give her new experiences. I’m trying to make up for the trips I had dreamed we would take. I remember how she squealed like a child when I brought her to feed koi at Suntec Mall. And how thrilled she was to see the 3D presentation of “How to train your dragon” at the Pixar exhibition at the ArtScience museum — she took my hand after the presentation and said, “Thank you” like it was the best experience she had ever had. These memories remind me that it’s the moments that count. Not the event. And I’m lucky I can still create new memories with her now. Even if she won’t remember them. Yes, I’m being selfish. It’s for me.
But without me trying, new Ma is creating wondrous moments for me to remember her by. A few months ago, my sister thought it would be a good idea to get Ma to fold 3 towels as a form of exercise. As soon as my sister dropped the towels in Ma’s lap, Ma dropped her head back and pretended to be asleep. A few seconds later, she opened one eye. She saw me watching over her, asked me to get closer to her. Then she whispered, “That woman is always trying to make me work!” 🤣
These are the moments I live for. So I need to be present for them as they could arise any time. Just like how she changed overnight.
Ma is no longer the mother who takes care of us, nag at us, and comfort us. Unlike the past, she has not said that she worries about how we will go on without her. This comforts me as she does not seem to worry anymore.
I know that her love for us is still there. Randomly, she would say thank you to me for taking care of her. I don’t find it a chore. I find it a joy and a privilege to be able to take care of her. It feels like a second chance at life. As Ian Fleming said,
You only live twice:
Once when you are born
And once when you look death in the face.
I’m looking at death in the face. Her death.
And now I feel that I can survive without her. It’s not that I don’t need her anymore. Rather, I’m glad I can be there for her needs. It’s a blissful feeling of acceptance. So much so that I sometimes feel that I’m ready to go if she goes. It’s not a suicidal wish, but a feeling of synchronicity which I can’t really explain.
That fire in her eyes may not be ablaze, but I know she’s still there. Especially at random moments when she stares at me with a smile and asks,
“Are your teeth real? Mine’s fake.”
