Under One Roof

I am pretty certain that many have been actively blogging over the past week since the "Stay Home, Save Lives" global movement. COVID 19 has brought the world we know to a standstill. As humans struggle to fight, medicate and survive this pandemic, it has given earth a chance to breathe again. I am not about to go down the "Nat Geo" path of docu-blogging. Far from it. I have had the chance to observe myself in this lockdown.

I am not surprised that I feel at home being confined to home. The introvert side of me is darn happy. I am contented to have all my kids all around me, working from home. Of course I am observing members of my family under the same roof with me and how they are coping with this newly imposed movement control. My elder daughter and her husband seem to find working from home with little to no big change. Such is life in the digital age where technology allows work to get done and delivered in the most limitless way. 

Having to shut down the counseling clinic during this duration is pretty hard to me as I find going to work and seeing clients as an escape from the challenges I face being mom's sole caregiver. On the plus side, I do have my daughters to help me with caring for her so I can afford some ME time in the sanctuary of my bedroom. 

I believe we don't need religion to be spiritual; and it is through our spirit that we connect with our Maker. Allah has allowed COVID 19 to happen to PAUSE the noise of life and living. What crosses my mind right now is how grateful I am for the WIFI at home so I am able to make this entry. 

As earth heals safely away from the unrelentingly inconsiderate hands of humans and development, I feel a spiritual renewal happening within me. I believe Allah is giving us a chance to get it right this time around by pushing the RESET button. Time for us to really ponder upon what truly matters to us.

So I have taken this opportunity to set my home in order by clearing and decluttering. Throwing out what no longer has purpose or value and organising my treasures in ways that are pleasing to my eyes and calming for my soul. I have felt this peace of mind once before. It was when I was in Mecca in July 2007. However, I failed to make it last after I returned to Malaysia. I admit I got distracted by my surroundings. Something I believe will happen once all this home quarantine is over. People will get distracted again. And again. And again.

Maybe mindfulness is easier to be achieved by someone who has retired from work and have their children all grown up. But maybe if we believe it is something important enough for us to master, we will be able to be actively conscious of what we are thinking, feeling and doing; not only to others but most importantly to ourselves. 

This may mark the end of the world we knew and the beginning of a new one. But if we don't start thinking about the consequences of our choices and actions, we will grow old in despair instead of with dignity. 

Take this time to think about what kind of a world we want our children to live in and start creating it now. May Allah continue to be gentle on us all, insya Allah.

We Are A Family Living Under One Roof.

"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.