Dearest Mak

Dearest Mak,

Its been 15 days since you went home to Allah. I pray He has placed you among the righteous and pious. So many people prayed the same for you, Mak. So many people wept over your passing. So many people fell over each other to care for you. That just goes to show how much you were loved. I don't think its possible for me to ever stop loving you.

Before there were anyone else, there was just you and me. I remember fondly how you cared and loved me. Despite everything that happened in between the years, there was nothing that you did that made me feel unloved by you. 

From you I learned how to be a strong, independent woman who won't take shit from anyone. You taught me so many things but you didn't teach me how to live without you. I feel your presence in my life after your passing. Somehow, I also feel Wan's presence in my life too. 

Mak, you were there to witness how your brother treated me. When your brother shouted at you and I defended you, I was shouted at also. When you were taken away from under my care, they broke me. I kept remembering how you once told me about your dream where your sons planned to place you in a nursing home. I was so traumatised when I was told you were on your way to a nursing home with the hired caregiver. No one pacified me. And they did that on my birthday! I didn't even get to celebrate my birthday with you. I was so broken until I had suicidal thoughts and trauma. I thought of jumping in front of a speeding car to end all the turmoil I was experiencing. Jasmene was quick to take me to see my psychiatrist who then prescribed me some added medications to help me climb me from the darkness. Of course they don't really understand or empathise with what I was experiencing coz its not as obvious as cancer. Sometimes I wish I had cancer instead of major depressive disorder and complex PTSD.

My psychiatrist advised me to move out of the house urgently because he said I won't be able to heal for as long as I was living in a very toxic environment. So, Jasmene acted fast in securing a condo for us to move into. Coming up with the deposit for the condo was such an insurmountable challenge that I had to beg and borrow to just afford the moving. As a result, the house was left behind like a crime scene. 

When they took you away from me, everyone went silent and no one communicated with me, Mak. I didn't know they were gonna move you back into your own home. And honestly, I had no means to even pay for a cleaner to clean the house. The house was just too expensive for me to afford continuing living in it.

Mak, I have done everything that you wanted me to do: move into your home and take care of you as your health declined. When you were living with me and my family, we had a lot of laughs and plenty  of happy memories. Caring for you during COVID-19 was made easy by Allah when I was able to withdraw money from my old age fund with which I spent a significant amount repairing the house and buying your necessities. I don't have a single guilt nor regret because I know for a fact that I went above and beyond my capacity as your primary caregiver during the lockdown years.

Mak, I can hear your voice giving me the same old advice: "Do the best you can and if that's not good enough to others, tough luck!" I also hear Wan's voice saying what he said to me years ago while we were in London. He said, "You do good for the whole of your life and people won't remember it. But when you do one thing wrong, they will remember it for the rest of their lives." How poignant, isn't it? People are so quick to judge how I was responding to their manipulations and toxic abuse. People are quick to judge me for something they aren't willing to endure themselves. So I left.

With your passing, the tug of war that involved ugly dramas has ended. Along with it goes the bond that lasted as long as you did. I have ended it by withdrawing myself from that family. I wish I could've died with you, Mak. The pain of losing you is indescribable.

HAJJAH NOORAZAH BINTI AISHAH

30.09.1943 - 30.05.2022

AL FATIHAH

"I Want To Go Home To My Father."

Today was very challenging to Mom. She was restless and anxious. She kept saying "I need to go home soon." as she caressed the side of my face with tears in her eyes. Regardless of how many times I explained to her that she is home, that she's living in her own house, she insisted that she needs to go home. "I am old now", she said, as she wiped the tears off her eyes.

Ater a few minutes of me in the bathroom, I came out to find that she had changed her clothes from the home-wear kaftan I had put on her after morning shower into a pair of baju kurung; as though she was ready to go out. She was pacing the compound of our home restlessly. This spurred me to do a little research by googling "what to do when alzheimer's patient looks for deceased parent"

I came across an article titled "3 Tips When Someone With Dementia Wants Her Mom or Dad." It went on to explain the following:
"Think of the young child who wanders off in the store. All of the sudden, she looks around and begins to cry because she's lost and doesn't know where her mom is. While we don't want to treat a respected older adult like a child, it can be helpful to remind ourselves that this lost feeling is similar to what they're experiencing."

I met her at the main door and persuaded her to come in. She said, "I want to go home to my father's house." My heart broke into a million pieces. I coaxed her into sitting on the sofa with me. As I held her hands in mine, I looked deeply into her eyes and said," Mom, grandpa passed away 8 years ago." Her eyes reflected the abyss of unspeakable loss.

Ever since mom lived with us, I have been applying all the knowledge I have in psychology and putting into practice the caregiving skills I had acquired over the years. I have seen how Behavioural Therapy such as classic conditioning and positive reinforcements have shown a reasonable amount of improvement in mom's behaviour. Currently, I am also using Reality Orientation in Alzheimer's and Dementia. It's an approach where the environment, including dates, locations, and current surroundings, is frequently pointed out and woven into the conversations with the person. Reality orientation, when used appropriately and with compassion, can also benefit those living with Alzheimer's or Dementia.

The tools for reality orientation aim to reinforce the naming of objects and people as well as a timeline of events, past or present. This typically involves:

• Talking about orientation, including the day, time of day, date, and season
• Using people's name frequently
• Discussing current events
• Referring to clocks and calendars
• Placing signs and labels on doors, cupboards, and other objects
• Asking questions about photos or other memorabilia

I am pragmatic enough not to have much expectations regarding the impact of the above on my mom considering that she is already at a late stage of Alzheimer's. Yet, I refuse to simply just give up on her as how she never gave up on me when she was teaching me the basic skills in life.

I made a few phone calls to mom's cousins and got them to speak to her on the phone. Perhaps she is looking for familiar faces. Perhaps she is looking for past connections. After all, I truly believe that connections are like bread crumbs that leads us back home when we are lost.

It's okay, mom. No matter how lost you may be feeling right now, I got you. And I will always be your one and only daughter. May Allah bless mom with syifa, always. 

Looking for Mom in Alzheimer's Forest

Ever since my mom has been living with me, I hardly get to see her. Every day, I deal with the disease that manifests itself in the most back breaking, exasperating and exhausting daily routine. I look forward to showering mom and dressing her. Meal times is extra challenging as she never knows what she wants to eat and sometimes refuses to eat what is served. This has given me an opportunity to choose my battles and let go of petty stuff. 

Early December when mom moved in with us, she would clean her face with tooth brush and toothpaste instead of brushing her teeth. A week after I started her on Calcium Magnesium tablets at night, she now brushes her teeth and that is a huge improvement on her part and a massive achievement for me!

She still confuses the trash with the laundry basket. That's an ongoing conditioning process. She doesn't resist putting on her disposable diaper underwear although there are times she gets cheeky and takes one off without putting on another. Another ongoing conditioning process.

A week ago, I started her on Evening Primrose Oil plus Fish Oil as a supplement for her to take after breakfast. Earlier this evening, I was watching television with her and a trailer for a movie was showing. "The Garden of Evening Mists" made me decide that I wanted to go watch it at the cinema. I asked mom what she thought about the film and she said, "The story is very interesting!" And in my head I went, "WOW!!!" Your guess is as good as mine whether the EPO plus Fish Oil has anything to do with this mental clarity.

I decided to take advantage of that window of lucidity of her mind to explain to her about what she's going through. She showed clarity of understanding when I explained to her about Alzheimer's disease and reminded her how her own maternal grandmother suffered the same. She remembers that. 

So, in day filled with routine of bathing, dressing, cleaning, washing, laundry, mopping floors, wiping soiled upholstery etc, whenever my spinal pain and body aches become obvious to her, the maternal instinct in her kicks Alzheimer's ass and she attends to my pains and comforts me in a way only a mother sincerely can.

I have been watching a lot of documentaries on Alzheimer's to learn ways of how I can do better by her. One that sticks in my mind is one about Edwin Honig; First Cousin Once Removed. Many things he said were so profound and the impact is long lasting.

"Edwin Honig: [YOUNGER EDWIN On video recording] I'm Edwin Honig and I've been around for 70 years, so I think. I've been a poet and writer... Born in Brooklyn, NY, September 3rd, 1919... Abraham Lincoln High School 1935... City College of New York... University of Wisconsin at Madison. Studied English... 

Edwin Honig: [OLD EDWIN] Who's this? 

Edwin Honig: [YOUNGER EDWIN, Continuing in background] ... graduated in '41, BA in Latin American Affairs, Spanish and Political Science. 

Alan Berliner: [Voice] He's the man who you once were. 

Edwin Honig: [YOUNGER EDWIN, continuing] "... 2-1/2 years, Second World War, European Theater. University of Wisconsin, MA in... 

Edwin Honig: [OLD EDWIN] I'm not impressed. 

Edwin Honig: [YOUNGER EDWIN, Continuing] ... Editor of 'New Mexico Quarterly'. Did I mention getting a Guggenheim? 

[Small laugh]

Edwin Honig: Got a Guggenheim. Got a year off writing fiction, allegory, satire. Went to Harvard... 

Edwin Honig: [OLD EDWIN] He's trying to be someone. 

Edwin Honig: [YOUNGER EDWIN, Continuing] Brown University. Professor of English and Comparative Literature. Director of the writing program... Experimentation. Started a small press, Copper Beach Press. Published a good many books, one on allegory. 

[Long Pause]

Edwin Honig: I've forgotten the title. Before I knew it, 26 years had passed. Retired in 19... 

Edwin Honig: [OLD EDWIN] He knows what to do with his head. I don't."

Life is indeed a cycle. We were born as infants with no memory or understanding about our surroundings and yet we have our lives ahead of us. As we become children, we have great memory of many things and mostly living in the here and now with no worry about our future or regrets of the past. When we reach adulthood, our capacity to remember grows and we have developed the skill to multi task: thinking about our past mistakes and making sure we don't repeat them, planning for the future with great amount of anxiety about the uncertainties in life; and topping that off, totally distracted from the here and now and we wonder where time went as we reach old age. At old age, we have little to no memory of what we had for lunch but have no problems reminiscing on how wonderful our childhood years were. But we have nothing but the here and now, as tomorrow is never promised to us. Just living out each passing day doing things to keep us feeling useful for as long as our frail bodies and fragile cognition allows us to 'keep busy."

Everyday, in my battle with Mom's Alzheimer's, I search for my mom fervently, waiting to connect with her so she knows how much she is loved. Because although she may not have a choice with regards to the cards she was dealt with, I can always do better by her. And that's what I shall continue to do until she needs me no more.