Looking for Dad

MYTURN “Momand I worked out a schedule to take turns taking care of Dad.” NIÑO JESUS ORBETA/PHILIPPINE DAILY INQUIRER

This isn’t a nice story. It’s a sad one, but one that my Dad’s neurologist said must be told.

It’s about how Alzheimer’s Disease (AD) has become an unwelcome and permanent part of our family and Dad’s constant companion. The debilitating illness has been behind the puzzled look he now gives when asked simple questions he can no longer comprehend. When that happens, all I can do is hold his hand and squeeze it, willing the man I’ve known as Dad to be himself again.

Before AD took over, my father, Oscar, a 70-year-old retired mechanical engineer, used to annoy us with his corny jokes. He laughed at his own silliness, was enthralled with the Beatles and loved to drive fast.

Dad’s favorite pastime was going to car shows, usually with me and my younger brother, Raymund. Inspired by the stuff he saw at these auto fairs, my father built two jeeps and restored two sedans.

‘Frankenstein’ car

He gave me the first jeep he had assembled and as a college girl, it felt way too cool to be driving a Wrangler around Diliman. My best friend, Daphne, and I named it “Major Tom.”

In my first years as a journalist, he would give me a Toyota that he had restored using scrap materials. I named it “Frankie,” short for “Frankenstein,” because its parts came from different Toyota models.

And while my brother scolded me for once driving Major Tom through a bamboo grove and for getting it stalled on East Avenue because the gas tank was empty, Dad had no harsh words for me.

Compared to Mom, he had always been timid and was like Mom’s shadow at home, letting her take the lead in almost every family matter.

When my older sister, Michelle, got married in 2005 and it was my parents’ turn to give their speech, Dad simply said: “Good evening everyone, our message will be given by the Speaker of the House.” He then handed Mom the microphone.

But Dad was clearly an eagle that kept a protective eye on his brood.

When I landed a government job in Pasay City at 21, he followed me on my early morning drive to work for a whole week. He wanted to make sure that I got there safely before he headed off to work himself.

My dad also had my sister’s back, even in faraway New York during that Sept. 11 terrorist attack on the World Trade Center. He was visiting some cousins in Los Angeles, but by sheer grit got himself on the last plane out of LA to get to JFK and be with my sister.

These are my memories that sadly enough, Dad can no longer share. The loss of memory was because Daddy’s brain has begun to shrink, a result of extensive damage to the neurons, or the nerve cells.

In November last year, as I was preparing for the Apec coverage, my Dad complained of difficulty in breathing. Because the doctors wanted to make sure there was nothing wrong with his heart, they gave him a series of tests, including an MRI to scan his brain.

The MRI showed that his brain—the part that controls the mind’s executive function—has again shrunk a little.

ROLE REVERSAL. Teaching Dad how to use a DSLR camera.  NIÑO JESUSORBETA / PHILIPPINE DAILY INQUIRER

Irreversible

Decades after Dr. Alois Alzheimer noticed in 1906 the unusual number of plaques and tangles in the brain of a woman who exhibited memory loss, language impairment and behavioral abnormality before dying from a peculiar mental illness, the ailment now named after him has become the most common irreversible form of dementia.

“In dementia, at least two of the brain’s executive functions (attention, concentration, abstract thinking and judgment) deteriorate enough to [impair] the individual’s capacity to carry out the activities of daily living,” said Dad’s neurologist, Dr. Socorro Martinez.

Our family is lucky that we have a strong support system. Relatives and friends, in their own little ways, have been helping us cope. What I appreciate most is that they include Dad in our conversations, talk to him kindly and always try to make him laugh.

Dad joins me and my friends for lunch and dinner out, and even concerts. He’s also part of my brother-in-law Patrick’s bowling club whenever he’s in the US, where he scores a strike every now and then.

It’s always difficult for Dad to leave the US and leave my sister and his grandchildren. But home in the Philippines is where he’s most comfortable as it looks familiar and gives him faint reminders of what he used to do.

We know he still yearns to drive but his lack of orientation and slow reflex make that impossible now. Early this year, we finally sold his beloved butter yellow Beetle simply because he could no longer continue its restoration.

At the house where we’ve lived for nearly four decades, Daddy and I would engage in conversation like we were playing Pinoy Henyo or charades because he could not articulate his thoughts. It rests on me to supply the words and put the whole story together for him.

FAST AND CURIOUS. Dad used to
drive fast and loved car shows.

Frustrating

While these conversations can be exhausting and frustrating for Dad, they also give our family a good laugh. Dealing with AD, you need a lot of humor to get you through the day.

Mom and I get tremendous help from my sister-in-law, Paw, who’d take Dad to watch my nephew’s school plays or swimming lessons after which they’d go to the mall.

At the end of the day, however, it’s just Dad, Mom and me at home.

I‘ve learned to manage the house while taking care of Dad. Recently, our sliding door got stuck and Dad watched me fix it.

“I used to do that,” he said. I assured him he still can.

We let Daddy lock the house at night, as he normally did pre-AD. We double-check it when he’s gone to bed.

Once, Mom admitted that she had asked herself if she would rather Dad had cancer instead of AD. I asked if she had an answer and Mommy said she had none.

Slow dance

Though she’s the most affected by Dad’s condition, Mommy is also the strongest in the family. She’s systematic, almost clinical, in how we deal with Dad’s situation day in, day out.

I never saw her cry, until last August when at our joint birthday party, a cousin sang “What a Wonderful World,” and Daddy sang along. My Mom pulled Dad to the center of the living room and swayed with him in a slow dance. Her tears voiced fears that they might not be able to dance again as much as they used to.

Last year, Mommy and I decided to take turns, because caregivers need caring, too.

Right now, it’s my turn to be Dad’s chief caregiver while Mom takes a break. She’s had her turn since May when they left for the US.

Soon, Mom and I will be a tag team once again. Our goal is to be able to find fun and exciting activities for Daddy to keep him from staying in bed and sleeping all day.

While the financial cost of taking care of Dad is staggering, the emotional cost is unquantifiable.

More advanced and progressive countries have AD-friendly communities where patients are allowed to move around by themselves, with caregivers supervising them. Such setup restores their dignity and faith in themselves.

The Philippines definitely has a long way to go.

Luckily, we are clannish by nature, with immediate family members taking care of loved ones afflicted with AD. The challenge is when the primary caregivers—the spouse or children—are overseas. Then there’s the stigma we still have to deal with, such as the common notion that people with AD are crazy or “nakulam” (bewitched).

Dog tag

Another problem is when the AD patient gets disoriented and wanders off. We had to get Daddy a dog tag with his name and our contact number after he went “missing” for nearly four hours late last year.

But Daddy sauntered back home, telling us he simply wanted to go around Araneta Center by himself.

Otherwise, people with AD are clingy. Dad would always ask me where I was going when he sees me dressed for work. I’d tell him I have to go to the office and he’ll respond with a sad face.

But as it has been our pre-AD routine, Daddy would always open the gate for me as I drive off to work, and wait up at night so he can open the gate.

Even with this story, I am still in that painful process of accepting that my Dad is slowly fading from us. Because what do you do when told that there is no known cure for what ails your father?

To this day, I feel guilty about not being able to have Dad diagnosed earlier. Having lived with my parents all my life, why didn’t I pay closer attention to him?

But as Martinez told me last year, the most important thing to do for Daddy is to give him the best quality of life while he was still… OK.

Things can be discouraging, however. Lately, I noticed that he would refer to mom as “Ate Lirio mo,” and I would remind him that he calls her “Darling.”

He’s forgotten my name once and I tried to ignore how painful that was. Even at 40, I still dream that Dad would one day walk me down the aisle. I pray that should that day come, he’d still know that I am Nicolette and he is Dad.