"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.

My Motherless Mother

More often than not, I am known for being my father's daughter. The world doesn't know how much more significant the influence of my mother, Noorazah Abdul Aziz, has on the making of who I have become today. Let me begin by telling her story.

Her mother died of pneumonia when my mom was barely three years old. With a brother who is a year younger than her, the duo was the center of a tug of war between two sets of grandparents who are as opposites as chalk and cheese. With a father who was obviously grieving over the loss of his wife and pressured by his own parents to agree to an arranged marriage, we can only imagine how it must be like for these two children back in 1946.

My mother suffered multiple abuses at the hands of those who were entrusted with her care, namely her father's wife. As they couldn't have children of their own between them, they adopted several children, starting with my grandfather's wife's niece. And while these adopted children were cherished and treated with the best, my mother, on the other hand, was treated very poorly, to say the least. Being married to my father wasn't a bed of roses either. Survivors of narcissistic personalities will tell you how their wounds are life long and a never ending trauma.

She showed me how a strong single mother looks like when she singlehandedly brought up my brothers and I after my father divorced her in 1978. She did it with almost no child support from my father. She pawned and sold her jewelry to afford medical care for us and thought nothing of it. She made her life decisions with our best interest at heart.

Thinking back on what my mother had gone through from her early childhood into her middle adulthood, its no wonder she has stage 6 Alzheimer's disease now. It began with a mild stroke she suffered when her father passed away in 2012, followed by several falls. I believe it is Allah's mercy upon her to help her live the remaining years of her life with no traumatic memory whatsoever.

You will find that all the above paragraphs contain repetitions of the word "suffer." The above story wasn't written with the intention to paint a bad picture of anyone. It just so happens that my mother's experience with all those involved in her life were not materials of happy memories.

As I look towards 2020 with my mom, caring for her as how she did me; being patient with her as how she was with me; I feel honored and blessed with this golden opportunity to be there for her in ways I hope my two daugthers will be for me. I am eternally grateful to both my brothers for taking care of mom during her decline, which I believe, must be the hardest phase of all. As they continue to support me in my caring for my mother, I cherish the bond between my brothers and I, something money can never buy. My mother does not need fame and fortune to validate how much she has given in the name of love and loving. In my eyes, she is my true superhero and her super power is resilience. May Allah continue to bless her with the best of dunia and akhirat. Ameen.