Coping with Dementia: My Personal Story

When you're little, you never think about what it's like to get old. You never think about what it would be like to watch someone as they get older, the burdens of taking care of your elderly, watching them slip away, and finally dying. Most kids don't grow up with a concept of death until it happens to them.

And then there's me. I grew up with my parents, my brother, and my paternal grandmother in a small three-bedroom house in Piscataway, NJ. My grandmother and I shared a room, as is customary in Filipino households. Because my mother worked in the city fulltime, my grandmother was the one who took care of my brother and me when we got home from school, dance lessons, and music lessons. She cooked and cleaned, and nursed us back to health when we were sick. When I think of comfort food, I think of what my lola ("grandma" in Filipino), used to make for us as after school snacks. She's the reason why I love chocolate, and coffee ice cream, and fried bananas, and Spam. (Don't judge, I never said she was a nutritionist.)

Lola was active, she was social, and she was fragile. And she never let us forget it either. I never really thought about this until I was older, but at 61, my lola packed up her life in the Philippines and moved to the U.S. to help raise us. She gave up a lifestyle that included maids, nannies, drivers, and social prestige. And she gave that up for her only grandchildren. Which, in her mind, meant we had "utang ng loob" or "debt of self". In other words, we owed her. Big time.

To make a long story short, I paid my debt to Lola by becoming her caretaker at an early age. As she got older, I got more and more "duties". By the time I was 11-years-old, I was her walker, her manicurist, her bather, her nurse, and her "English-to-English" translator. She continuously told me that the sole reason I was on this earth is because her prayers for a granddaughter to take care of her had been answered.

So you can imagine that she never quite forgave me for breaking away my senior year in high school when my parents got divorced. She never really got over me going away to live with her ultimate rival - my other lola (my maternal grandmother). And she never understood my need for independence and the freedom to draw a breath without her in my space.

As a result, I missed the signs. The slow but continual deterioration of her motor skills, the confusion, the depression. I was so tired of her crying all the time to get her way that I didn't realize this crying was a symptom of dementia.

My dad told me it was bad, but I just thought Lola was being her dramatic self. After all, this is the woman who got me to behave when I was little by telling me she was dying. Every day. This is the woman who received Catholic last rites more times than I can count, only to recover and get better. They told me she was suffering from dementia, and I guess I just didn't want to believe it.

Then I visited her a couple of times, and I started to see the difference in her behavior. Lola was slower, didn't realize what was going on around her. Once during a visit, she almost stuck her hand down the garbage disposal - while it was running. I yanked her hand away, and called my dad in a panic. Shortly after, my dad and stepmother put her in a nursing home.

The dementia got worse. But I was starting my new adult life in Las Vegas and I had to work. I never called. I visited only once or twice a year, and when I did I couldn't wait to leave the nursing home. She didn't remember anything. Lola thought my dad was her deceased husband, and she thought my brother was my dad. And she always, always thought I had finally come home to take care of her. It was depressing and very hard to handle. For all the issues we had in our relationship, I couldn't reconcile the feeble old woman with the vibrant social butterfly who had raised me. And so I coped with it by refusing to deal with it, even when it was in front of my face.

I guess I remained in full-blown denial until the time finally came to say goodbye. When the nurse said, this is it; she's not going to make it. For the first time in over 10 years, I dropped everything and went to be by my lola's side, just like she had always wanted me to. I finally allowed myself to see what dementia had done to her, darkening her brain until she was just a shell of her former self. And I allowed myself to finally cry, to deal with it, to make my peace, to tell her I loved her, and to kiss her goodbye.

At her funeral, I heard the whispers of her friends. That I was the granddaughter, the one who never came around, never visited, never paid her "utang". I know what it looked like. It looked like I didn't care, didn't love her, and didn't know my obligation. I have nothing to say to that except that maybe they were right. I just didn't know how to deal with everything that was going on. It's not an excuse, only maybe an explanation. My grandmother died of pneumonia, but she lived with dementia. And I coped with it the only way I knew how - by not coping with it at all.