The premiere of You’re Looking at Me Like I Live Here and I Don’t is tonight, March 29 (check local listings). This week, we’re presenting stories about Alzheimer’s from our staff, friends, and viewers. Today we bring you a story from our associate director of engagement and education.
Going for Miles
by Duong-Chi Do
It’s been a long journey since my father was diagnosed with Alzheimer’s in 2003. He is late-stage now; he hasn’t recognized me as his daughter for quite some time, though I like to think — and sometimes dare to believe — that when he sees me, he knows that I’m someone special to him.
While I regard this disease as a curse with every fiber and bone in my body, it has also laid out, in stark relief, that there is nothing more important to me in the world than my family. Nothing. When my mom broke the news to me, my first response was an emotional breakdown. My second response was to seize every opportunity I could to fly home and spend precious time with him. It’s as though I’d heard the click of a stopwatch and I was suddenly in a race against time and the disease.
Well, the race has turned into a marathon, and we are all tired, no one more so than my mom who deserves a thousand gold medals for nine years of 36-hour days devoted to caring for my father.
As Dad’s Alzheimer’s has progressed, I have seen some of his best attributes distilled into its purest forms. He’s no longer capable of conversation, but often blurts out a jumble of made up words and sounds. Sometimes, though, he musters a phrase or two that I think reflects what he cares about most in life: family. And I’m glad that part of him still shines through.
I was back in Ohio earlier this month for a visit. Dad was in hospice; he’s been fighting pneumonia since December of last year. One day after my mother and I had finished feeding him lunch, he mumbled something in Vietnamese that I couldn’t quite make out (English escaped him long ago and my Vietnamese is abominable). My mom translated: “I need to go to America and make money for my children.”
A few years ago when we were still able to talk on the phone, our conversations would loop endlessly around 20 central questions:
Have you eaten [insert meal here] yet?
Where are you?
When are you coming home? (x 18)
So while I’ve mourned the loss of my father countless times over the last nine years, I win him back for fleeting moments in these declarations of fatherly concern and fatherly duty. He always wanted to know that I was taking good care of myself; he always wanted to make sure that I was somewhere safe; and he always would rather have had me at home with him and my mom.
It’s been a long journey, this marathon. My mom, my dad, my brother and two sisters, we’ve been running it together, as a family and a team, doing the best we can to keep a good pace, doing the best we can to support each other. I’ve been surprised at the stops we’ve been able to make along the way. While he was still in the early stages, my father and mother traveled; they went on vacation with his old military buddies; they came to San Francisco where my father retraced his steps across the Golden Gate Bridge from a visit decades before; there was an incredibly fun trip to Chicago to visit my sister. And while having him seated in a wheelchair in the front row, praying that he wouldn’t make any loud outbursts wasn’t exactly what I had in mind for my big day, I was thrilled that he was there for my wedding in 2010.
The marathon continues, and I don’t want the finish line to come. I’ve never been a runner, but I want the miles to go on and on and so I can make the most of the time I have with my father, and who he is now, while the stopwatch is still ticking.