A Memory to Remember

It has been a month since you left. I’m glad that you’re in a better place. No more just lying there the whole day; no more suffering.

My grandma suffered from Alzheimer’s disease for years. She was first diagnosed in 2010, though it may have already started well before that. Let me give you a little background story of the person my grandma was.

When I was young, from the day I was born till about 8 years old, my grandparents would take the commuter up from Seremban to Seri Kembangan every single week to look after my brother and me. Despite growing older, they never failed to do their best to see to my brother and me, since both my parents were working. Every early Monday mornings, my grandma would take the first train up alone at 6am despite her poor eyesight, and my grandpa would follow suit on Wednesdays immediately after his weekly dose of golf and they will go back together on Friday evenings after my mum comes back from work.

With my mum, grandparents & brother.

Birthday celebrations. 🙂

Poh poh would always accompany us to the playground. 🙂

Throwback to this family picnic which I don’t really recall as I was too young! I think my mum took this picture as she wasn’t inside, haha.

I still remember how my grandma would style my hair every day before I went to kindergarten and soon primary school. I remember how my teachers and friends would ask me who did my hair. I’d proudly say that my grandma did it for me. This was one of the main reasons why the only hairstyle I knew how to tie was a ponytail as my grandma would do the rest, haha!

I remember how she’d juice orange with honey for my brother and me because that was our favourite drink. I remember how she’d always make sure that we’re healthy and happy. I remember how she won’t let us sit too close to the television, I remember how she’d ask us to brush our teeth immediately after eating, I remember how she saw me safely off the school bus when I was in kindergarten and waits to welcome me home every day,  I remember how selfless she was, I remember, I remember…and the list goes on and on.

Aha! The TV controller is all mine! 😉

When she was diagnosed with mid-stage Alzheimer’s in 2010, I remember she was still able-bodied – still able to walk, talk, open her eyes and converse. But we could all sense that she wasn’t herself. She could ask the same question over and again. I remember her asking me, “Jan, where’s the toilet” for about 10 times in less than 5 minutes. No, she’s not a stranger to my house.  As time went by, my grandpa was finding it hard to cope with my grandma alone in Seremban, thus in 2013, my grandma moved up permanently to stay with us in our home.

When people visit, they’ll say, “She looks good!  Still healthy and able!” People often don’t see beyond the current physical state. People don’t’ understand the difficulty of coping with day to day life. Going in and out of the car was a challenge as she just didn’t know how to lower her head to get in thus we often placed our hands over her head. She may put both legs in the same pants opening or put her neck through the sleeve. Eating needed coaxing and soon had to be fed as she had forgotten how and may not recognise the food either. Toileting needed to be assisted. Even brushing teeth was a herculean task as she would often swallow the toothpaste instead of spitting out. My mum then changed to herbal toothpaste. Even when she slept, she may accidentally roll off the pillow and suffocates or get stuck between the hospital bed railings because she didn’t know how to turn back. Thus my mum will line the railings with bolsters.  Every process needed careful supervision. All these, unseen and unknown to most and mum needed to always think and plan ahead while sending us up and down to school, our 101 activities and juggling everything else – ensuring that Dad, my brother and I have uninterrupted schedules.

My grandma was initially painfully aware of her declining state and often questioned why. She was always tired and though she tried so hard to do more, she could not and often felt bad afraid of being a burden. She would try to help fold the clothes and sometimes just slump in exhaustion.  I still remember the times where she’d look in the mirror and ask, “who is that?” when it was her own reflection.  When Mum was busy, she will place grandma in front of the mirror and she’ll have a conversation with her own reflection thinking it’s her sister. Once, we told her that we’ll be going to watch Roger Federer play tennis in Bukit Jalil and no one was in, it’s ok, just rest and we’ll be back at night. When we came back, she was asleep but all our cupboard doors were wide opened. She was probably looking for us.

As she progressed through the disease, she soon forgot how to walk. It’s not that her muscles are weak, or that she doesn’t have the strength. No matter how strong you are, if your brain can’t coordinate with your leg muscles, you can’t walk. My grandma soon became bedridden.  The brain controls everything and not just memory. The brain controls your body parts, your balance, your senses, your organ functions, your language and comprehension, how you perceive and response, your immune system and just about everything!  Thus it is a slow, long and lonely journey of not just memory decline but also a physical deterioration and towards the later part, incontinence sets in and the immune system is often compromised.  Words are slowly forgotten one by one and soon speech is also affected so we must be aware and understand without being told. Sometimes, she’d even forget how to swallow and would choke. Her eyes were closed most of the time. Oh, how lonely it must’ve been for her, to live each day in darkness.

My family and I are very blessed to have had Ailyn as a caregiver for my grandma. She was ever so patient with her, strong and observant and really showered my grandma with all her love. Ailyn was like family to us, and vice-versa. She was with us for almost 5 years before leaving back to her own family and since 1st April 2018 my mum handled my grandma single-handedly till 11th August 2018 – the day my grandma parted. My brother and I helped whenever we could especially in cleaning bedsores and occasionally singing and playing guitar beside her.

I was out and about the few days before my grandma left. She left on the 11th August 2018, Saturday morning. She just knew when the right time would be to go. That week, I was busy preparing for a scholarship interview. A day before she left was my scholarship interview followed by a photoshoot. I remember saying to her, “Hi poh, I’ll be going for a scholarship interview soon and for a photoshoot after that. Please pray for me. I will do my best to get this scholarship for you. Don’t worry, all of us are doing fine here. I will be back late tonight but don’t worry, rest well.”

Who knew that she’ll really go the very next morning? I was sad as I couldn’t spend time with her and be by her side on the very last day of her life. If she were to go a few days later, it’ll be too late as I’ll be in China. But it was nice knowing that she’ll always be watching me from above. When I was in China travelling alone for the first time, I knew that she was always following me by my side. I knew because on the way back during my transit, the song “Amazing Grace” played in the airport. Not once, but twice. I knew she was looking after me and I’m so thankful for that.

I’ll always be that little Jan Jan to you, poh. 🙂

Out of all the things that I remember, I choose to remember her at her best. Sometimes, I wish I could turn back the time to when she was still aware and alert of her surroundings. Sometimes I wish that she’ll be here to attend my award ceremonies and see how much I’ve grown as a person. I know that I’ll really enjoy sharing my stories with her.

Empty.

But now, she’s gone. You must be thinking, “this is probably just another emotional blog post by a girl who lost her grandma.” No. I don’t want this to be another emo blog post. I want this to be an awareness. I want people to know more about Alzheimer’s.

People would tell me, “you should keep your brain active, else you’ll get Alzheimer’s. If you don’t use your brain enough, you’ll get Alzheimer’s.” My grandma was a career woman. She worked in the Special Branch of the Seremban Police Department. That tells a lot about how much she uses her brains. I’m pretty sure that my mum would have a lot more to say of what an intelligent woman my grandma was. Ronald Reagen, the 40th US President, also suffered from Alzheimer’s. Are you trying to say that a president didn’t use his brain enough to run a country? Even Margaret Thatcher, the former Prime Minister of Great Britain, the Iron Lady renowned for her razor-like intellect and power-house memory was blighted by dementia and many, many more people from all walks of life.

I’m writing this not to seek sympathy, but rather for those who are walking through this road to know that you are not alone as I know it is often hard to share as many do not understand. And I am writing mainly to call out upon those who are able-bodied and able-minded, not to gloat with self–supremacy. Our health is like our assets and sometimes people fall prey to pride and tend to snub those who are not fairing as well. Remember that Alzheimer’s does not choose its victims. Remember that everyone wants to lead a long and healthy life, but it doesn’t always turn out this way. I believe that we are placed in this world to help one another, to walk the mile and bear the load. If we are able, we should question ourselves, so how can we help? How can we add value especially to those who need it most? It could be just helping send a warm meal over, or giving someone a lift or a weekly company, a listening ear etc. As the Methodist saying goes – ‘Do all the good you can, for all the people you can, in all the ways you can, as long as ever you can.”

One does not need to remember in order to be loved. Everyone is deserving of love. Remember – that the victim may no longer be able to remember you; just remember that they need you.

This will forever be a memory to remember. Happy Alzheimer’s Awareness Month!

One of my favourite poems about Alzheimer’s that I stumbled upon.

Link to a documentary that my friend’s & I made for our assignment last year: https://www.youtube.com/watch?v=pb7M6hQ1_zs&t=11s

This documentary features both my grandparents. We were given feedback to “complete” it, which means to record the stages of Alzheimer’s right till the end stage, but it wasn’t easy to do so. I hope this video speaks to you and gives you a bit of insight into Alzheimer’s.