Dad: How far is your house from here?

Me: About 14 miles.

Dad: I’m tired. I think you should go.

Me: But I promised Mom I’d watch you.

Dad: Where’s Mom?

Me: In Mexico. Visiting her family. She’s coming home today.

Dad: I’m fine. I don’t need you here. I’m tired. You should go.

Me: Okay.

That’s when I called my sister…

The day didn’t start out this way.  That exchange happened around 6 pm. We’d made a day of it, Dad and I. We ran errands, had lunch, even went to a movie together. Then things got a little complicated, ending with my saying to my older sister, “Thank God for pharmaceuticals.” In the end, I had to turn my Dad into Neely O’Hara to restore order. Under normal circumstances, this day out with Dad should have been like it was 40 years ago when we were father & young son. Now the roles are reversed, but with one crucial difference: Alzheimer’s.

Being with an Alzheimer’s patient is a bit like being in a scene from “Groundhog Day.” Repetition is the name of the game and it requires a decent amount of patience and humor when they are this stage. You push away thoughts about the silence still to come when they enter a state of haunted immobility as they no longer engage with the world. For now, we can still have conversations. These are comprised of lightning rounds of the same group of questions as they fixate on specific topics. In my Dad’s case, it usually involves the measurement of space or time.

I was assigned one day to sit and care for Dad, which was also the day Mom was to return from visiting her family in Mexico. Dad’s mental long play record was stuck in one groove. His current jam was the track about where was Mom and when would she return. My younger sister had gone to work and I was chuffed by the idea of getting to spend time with Dad in during the regular week.  I sat in our family home living room, taking care of Emails as Dad took his usual spot, the outside porch. Yet, for the next 90 minutes, he’d rotate from the living room to the porch. Each time Dad would enter the room, he’d ask:

Dad: Tu viniste a cuidarme?

Me: Si, papá.

Dad: Muy amable.

He seemed touched to know I had been asked by the family to take care of him. He’d rap on the table, an emphatic gesture that made me smile. An hour or so later, his pacing evolved into that of a caged animal. His eyes glittered in a unique way and the rapping, which at first felt like a war buddies fist bump, now had a tone of anger. Without hesitating, I took Dad on a Target run.

My Dad has been afflicted with Alzheimer’s for well over a decade. We’ve been fortunate to have him mentally present with us for so long. He recognizes my mom and sister, who care for him 24/7. As for the rest of my siblings, we are in iPod shuffle mode. Sometimes he knows who we are and we ignore the times he doesn’t.

Sometimes we are simply “los muchachos,” a catchall term that refers us as being his “kids.” It offers its own comforts, being part of that group memory. We’re still his children. Then reality takes over. One time, he told Mom I couldn’t be his son since I’m too old as he’s only in his 50s. I go, “Mom, that makes you an OG cougar.” We both laughed. You have to laugh, otherwise, you cry.

Dad’s eating habits are changing. Texture matters, in addition to the color of his food. At times, he can forget when he’s had a meal, then he’ll insist that he hasn’t. He is losing weight. He’s irascible at times, the Latino machismo surging to a boiling point when contradicted. Again, those glittering eyes are a sign for us to be calm. That’s when he’s in that “mad” mode.

My mom and sister have learned to wait out the tantrums instead of fueling them further, although I see now why Mom has no fuse at all anymore. Their matrimonial sea roils and it calms itself just as suddenly as if nothing happened at all. Yet the after effects are revealing the wear on her, too. The one saving grace? Whenever things do get too intense, Dad’s physician has prescribed Dad a mild sedative. Yes, it is on par with giving a screaming toddler Benadryl, but sometimes…

IMG_5787

I can see Dad’s age now. He’s 92. I regret not getting him on record to capture his view of the world, the chronicle of a Mexican immigrant father, businessman, and world traveler projected against the canvas of contemporary history. Today, he can’t differentiate what he sees on the television screen, fictional or otherwise, from his real life.

When we do receive those treasurable moments, though, it is on par with winning the lottery. Like the time, I went to meet Dad and my younger sister for a showing of “Atomic Blonde.” As they entered the cinema, he saw me and instantly opened his arms for a hug. Usually, he just offers a gentlemanly handshake and a pat on the shoulder, which was his way. But this was wonderfully different. For a moment, we were on the track many grown sons are with their older parent.

Families, particularly Latino families, do not like to share the truth of their loved ones’ health, especially serious conditions. For whatever reason, illnesses are a “private matter.” We become traffic wardens, telling onlookers, “Move along. There’s nothing to see. Everything is alright.” But everything is not alright. Our parents will get sick. They will change because of an illness, not because of some cosmic punishment.

I understand the desire, particularly when it comes to our parents or grandparents, to want people to remember how they were and not as their infirmed selves. It is such a waste of time, time left with us that we can’t possibly measure or gauge. Family can become so entrenched in denial. Better living through chemistry, at least when it comes to Alzheimer’s, yes. But the truth is it is just a stop gap.

I see where we are heading with Dad. That’s why I choose to laugh now about his, “Yo soy el dueño de esta casa” demeanor. It wasn’t easy knowing he wanted me to leave his house. My work caring for him was done and he wanted his independence and space back. Later that night, I regaled my Mom and younger brother about how Dad refused to go to sleep because he wanted to make sure I wasn’t going to “steal his shit.” Eventually, like a toddler, sleep caught up with him. Granted it was aided with the sedative I gave him a few hours earlier, but our cherished Poppadoodles was finally having a well-deserved rest.

I do not regret the frustration I felt at times that day. At times, I wanted to just yell, “Why don’t you understand?” I felt robbed because I can’t stop thinking about the conversations we could be having now we are both able to communicate again. It all seems so unfair. I can’t tell him I finally understand what he tried to teach me when I was a kid. I can’t tell him how he hurt me when I came out to him 17 years ago. I can’t tell him that I forgive him. I can’t share with him how I think this full circle reality we share is so good and inspiring to me.

Like “Groundhog Day,” we will be back at the same starting point the next day and the one after that. Our “Dad’s Day Out” will be forgotten, but how marvelous to know that when we do get to do this again it will be like a brand-new adventure. We have nothing to mourn or feel sorry about here. Dad is a part of many lives, not just with the family here and in Mexico, but our friends, too. As long as that smile still shines through I will remember what his mind can’t hold anymore. It’s the ultimate privilege and the best story I am ever going to be able to tell.

From the Alzheimer’s Greater Los Angeles website:

“Alzheimer’s Greater Los Angeles is a leader in developing culturally and linguistically appropriate programs and services, including those for Latinos.  Research shows Latinos with dementia are low users of formal health services and less likely than non-Latinos to see a physician.  Given the significance of familia in the Latino community, families (particularly daughters) provide a disproportionate share of Alzheimer’s care.

In order to reach these women (and their families) ALZGLA has taken a creative approach…we produced a bilingual, educational telenovela.  Lost Memories tells a story familiar to many Greater Los Angeles families.  It also disseminates complex medical and health information to caregivers with the goal of raising awareness of Alzheimer’s, fighting stigma, and encouraging Latino families to seek help sooner.

In honor of Latino Heritage Month,the 4-episode web series will debut September 19 at alzgla.org and on YouTube.

 

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