She laughed, Of course I can! I want to know if you can read it!
We said, But we want you to read it to us. Read it aloud!
And so she did, with a loud clear proud voice she read the whole letter, hesitating over words she could not decipher. Yet she could remember the pronunciation of names that were not English, and said them correctly.
When she finished, I asked her what the letter said. And she told me what she understood, passage by passage, reading again from the letter to remind herself what it was about.
I would give her 50% for reading comprehension.
She knew what a sentence meant, even when she could not remember the event it referred to
She knew most of the people in the letter
She was happy to read the letter, recognising it was written with love
It doesn’t matter the parts she did not seem to understand, which were the parts referring to the passage of time, someone’s accomplishment, or illness, or future plans. She seemed not to recognise the significance. Or she might have understood after all, and I didn’t see it.
Last year, a Singapore documentary maker filmed a short series called Facing Dementia, spurred on by his experiences with his mother. Galen Yeo interviewed persons with dementia and their caregivers, giving a poignant view of the struggle to live with dementia and the available support in Singapore.
Some memorable people in the series:
A woman acting violently towards caregivers because she didn’t like what was going on,
An artist expressing his feelings as a caregiver for his mother through visual art,
A woman with young onset dementia who lost her job and stayed home until she was properly diagnosed and started on dementia day care,
A retired man with dementia who was living as well as he could and making plans for his future,
Persons with dementia and their caregivers experiencing a support group.
Every person with dementia has a different journey, and the series portrayed the variety of challenges faced. Some of the persons with dementia were able to afford and hire caregivers, others were reliant on family members, some of whom had to downsize their careers.
I strongly recommend this series for anyone (especially in Singapore) who wants to know about dementia and the treatment and support available. Singaporeans are at a higher risk of dementia than the developed Western world, for reasons that are not obvious.
You can watch a 10-minute trailer on Galen’s mother here:
Mom hates to move about, she has become very fond of just sitting. She still walks around the home and is mobile, but is becoming increasingly stooped. Getting up from her chair takes long moments of concentration to coordinate the right movements and exertions.
After an attempt to bring a physiotherapist to the home to engage her in exercise, I realised it wouldn’t work. The physiotherapist felt she was still alright, and encouraged us to get her more active throughout the day. Scheduling exercise with a professional might do more harm than good if we didn’t do anything in between sessions.
So here we are, trying to staunch the decline by exercising Mom 5 minutes at a time (*contrite expression*). I’m still figuring the best things to make her do, the most “value-for-money” movements – for example, half-squats seem to be particularly effective, and she is getting out of her chair a little quicker. Stretching upwards several times improves her posture within minutes.
Mom finds it funny and often giggles and laughs, which is good breathing and abdominal exercise, so I encourage it. She has lost the coordination to be able to “blow out a candle”. I shall practise that next.
Mom used to be very vehement about this – Don’t tell me what to do, I will decide for myself.
Isn’t that so true for all of us?
Case in point, a colleague asked me to join the group for lunch saying, “Don’t be so anti-social, you really want to eat with us.” So against my initial impulse I went along, and was nice and social, but I felt out of sorts after that. I had forgotten an errand I meant to do. When we don’t choose what we do and just go along, it affects us, whether we realize it or not.
For some reason I’m reminded of the time I went apartment hunting and met all sorts of real estate agents, the good and the bad.
I would say if I didn’t like the place, and I would get different responses from the real estate agents.
The good ones said –
What don’t you like about this place?
What do you think about the location?
How does the layout suit you?
Do you like a high floor or a low floor?
Are you okay with this price range?
How about next week I show you a few more according to your taste and preference?
The bad ones said –
Why not? But this is very good! This is excellent!
It’s not noisy, I don’t hear anything. You’ll get used to it.
For your budget this is what you get.
What you want doesn’t exist.
You can refurnish how you want and it will look fine!
Well, don’t tell me!
Mom is much more relaxed these days, she no longer insists on making decisions. You choose for me, she would say. She would put on the clothes we lay out, eat what we prepare, watch whatever TV channel is on, go where we bring her. She’s happy with the world.
Looking through old photographs of Mom, it becomes obvious to me how much Mom has changed. Many years ago when I was younger, she would hardly pose for photos, “I’m too busy,” she would say, “what do you want a picture for? I’m not dressed for it”. Her smile for the camera, if we could get her to pose, would be an intelligent one, sure of herself.
In more recent years, after the onset of dementia, she often seemed to be laughing and smiling very brightly. I remembered those occasions. When we dined out, she would only give a quick glance at the menu and say, “What are you having?” and then, “I’ll have that too”. Her indecision extended to other areas, especially dressing, and packing for travelling, “What shall I wear? What should I bring?”. And later on, the questions broadened into, “What do I do now?”
Sometimes I wondered at the overbright smiles, was she hiding her uncertainty? Trying to fit in, being obliging, quick to join in in case a joke had just been made? Or maybe she was just happy, and its just me who was too suspicious because it seemed so out of character.
Nowadays, Mom smiles and laughs easily, she seems almost “ticklish” at times. She’s happy to be alive and looks forward to what the day brings, whatever it might be.
Everyday my mom starts her day by greeting me thus.
She calls me Sister only but once a day. The rest of the day I am nobody. But without a doubt I will be Sister once more when morning comes again. It is like a game we play, every day, same time, same place.
I tried interupting her by boldly saying “Good morning, Mom!” before she can get a word in, but she only laughs and says back, “Good morning, Sister!”