Dads, Daughters and Debilitating Illness

When children take on the role of caretakers in their families, they view the world differently; they see the struggles of their parents and understand that playing with dolls and train sets cannot improve the situation.
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"I wish you had a real dad," my father said one night last month as I was going to sleep. It was a jarring change from the "I love you" and "I love you more" that are usually the wonderful close to my day.

"What in the world do you mean?" I asked. "I wish you had a father who could take you to shows and go out and do stuff with you. Like we used to," he explained. I admit that I do love Broadway, but I love my father infinitely more. And frankly, as a 16-year-old girl, it was embarrassing enough to see "The Book of Mormon" with my Mom. "Good night, Daddy," I managed to whisper.

When my father was 59, he remarried and began a second family. In a story published a year after I was born, the New York Times dubbed him a "Start-Over Dad." I have two half-brothers who are 50 and 48. My brothers call me "Sis," and since they have kids, I am technically an aunt, though "Aunt Lily" sounds somewhat odd when your niece is only seven months younger than you. But wait, there's more. My Dad has Parkinson's Disease, which is why he cannot go out with me like we used to and why he thinks he is not a "real Dad."

In some ways, it seems that our cultural definition of what it means to be a "real Dad" is expanding, or at least open to debate and discussion. On television, shows like "Modern Family" and "The New Normal" exemplify my view that atypical families are just as "real" -- with just as much love, devotion, and commitment -- as any typical family. In "Modern Family," 60-something Jay is also a "start-over Dad." When Jay married Gloria, a single mother in her 30s, he became a stepfather to her son, Manny. Much of the humor of Manny's character is derived from the incongruence between his young age and his maturity. Manny is only 12 or 13, but he plays golf, wears three-piece suits, and does not try to hide his emotions. It makes perfect sense that Manny is like this; from a young age he viewed himself as his mother's protector, losing some of his innocence in the process. When children take on the role of caretakers in their families, they view the world differently than other children; they see the struggles of their parents and understand that playing with dolls and train sets cannot improve the situation. Only the children's love and devotion can help. For most of my life, I have been shielded from my dad's worsening condition and in this way my parents have preserved my youth. But now that I'm a little older, I better understand the reality of my father's illness, and I have matured into a part-time caretaker.

If my Dad ever looked at his two sons all those decades ago and wondered what the female version of him would look like, he's in luck. I often sign my e-mails to him, "love, mini-you." We have similar facial features. We're both tall. We are also both more than a little hardheaded. We argue over whether "disconvenienced" is a word (it is; I won that round). And though it doesn't make a lot of sense to me, I join him as he keeps on rooting for a bunch of losers like the Mets and Jets. We share the idea that if everybody would just listen to us, the world would be a much better place.

My Dad is retired, so we spend a great deal of time together. He tells me that there are lots of things worse than Parkinson's, but I know that the illness has taken its toll on him. I have grown used to his shaking, to the uncontrolled muscle movements which cause him to sweat through shirts, the sudden fatigue at some times and, at others, the sudden over-the-top anger. Every night, I sort through the medicines my Dad must take the next day: four pills at 6 a.m., one at 9:30, three at 12:30 and so on. When the meds are "on," he can seem to be the way he was five years ago. When they are "off," he can't hold a fork or spoon and bounces, slips and slides on his chair at the dining table. Once I somehow got my left pinky to start trembling: "sympathy shakes," I called it.

My Dad, jokingly, says that the most effective treatment for tremors is alcohol. Thus, at 16, I have become his personal bartender. Friends who came over to work on a school project discovered this when he called out from another room, "Lily, sweetheart, can you make me a Manhattan?" If you ever need a "classy man's drink," as my friends put it, I'm your gal. Some of you might wonder how responsible it is to trust a high school junior with hard liquor. Not to worry, concerned reader: If there's one thing my Dad and I don't share, it is his love of whiskey.

My Dad's Parkinson's has taken a toll on me too. It has definitely exacerbated the anxieties that most teenage girls have. Last month, our 12-year-old pug, Puddles, suddenly died. Puddles' death made me consider that older people who are dear to me might also die -- not just my parents, but also my grandparents who are nearly 90, my childhood babysitter, and others. But my Dad's illness has also made me fierce about protecting him. A few nights ago over dinner, one of our friends, a scientist with no expertise in Parkinson's, told my Dad that mushroom pills would slow the progress of his condition. I questioned the man sharply, using hardcore biology concepts my biology teacher, Ms. Murphy, would've been proud of. He backed off, saying that he really knew nothing about Parkinson's. My Dad gave me a title: "Defender of the Father."

My father's situation is far from unique. As more and more Baby Boomers become senior citizens, there will be greater concern about diseases which affect aging like Alzheimer's and Parkinson's and younger family members will have to look after parents or grandparents. I can't speak on behalf of any other young Defenders of the Father, but this I know to be true: my father is a "real Dad." He's not typical, and as a result, our family is atypical, too. But family is about being there and caring for each other; in our family, the normal construct of parents caring for children has been intertwined with children caring for parents. I'm proud to be a member of a modern, entirely real family.

lilycohen

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