1. Torrisi, Donna MSN, CRNP

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My dad has Parkinson disease.

There is a do-not-resuscitate directive on the refrigerator. My mother is his caretaker.

FIGURE. No caption a... - Click to enlarge in new windowFIGURE. No caption available.

For now, Dad sits in his chair, leaning so far to the right that it looks as though he might just tumble out. His body can no longer hold him upright. The chair's electronic components lift him to a standing position. He used to love electronic gadgets, though this is one he would not have wished for.


My dad has diminished cognition, vision, and hearing; his high-volume earphones play books on tape. Does he really follow the story? Or does he listen for our sake? If nothing else, it lets us believe he takes pleasure in the stories we play for him.


My dad has Parkinson disease. My mother is his caretaker, and she is often tired.

The four rooms of their fastidious home are scattered now with the things that keep him going. Pill bottles and organizers line the new, almond Formica countertops: Stalevo for parkinsonism, Zoloft for depression, Seroquel for drug-induced psychosis, MiraLax for constipation. Alarms remind my mother to measure his blood pressure and give the pills. At night, he wears foam-rubber booties to protect his heels from rubbing against the sheets and causing blisters. And there's the stainless-steel walker; a hospital bed; and two wheelchairs, adorned with matching back and seat cushions, one for indoors and one for outdoors.


Visiting from Philadelphia.

On my visits to Florida, I care for my father as much as I can. I put him to bed one night. He is stripped to his Depends and a white T-shirt. I am accustomed to seeing this once-sturdy and self-reliant man as an adult-sized child. I elevate his head to the required 30[degrees] angle to maintain blood pressure. I prop his feet with a pillow to keep pressure off the heels. I tuck him in, but I cannot attach the condom catheter. For this, I call my mother.


My mother has not lost her sense of humor.

Her sighs, frequent and long, are the only signs of her stress. We wonder together what is left of my father's mind. Then he gives us a glimpse. One afternoon, we sit around the family's heirloom mahogany dining table. My mother's friend Norma, recently widowed, is urging her to go to a dinner-dance. "You can sit with me and the girls" she says, and my mother says for the third time, "I just couldn't. I have a husband." Dad breaks in: "Heah, what are you doing, leading my wife astray?" My mother laughs, such that her face turns red and the tears flow.


To the rescue.

Strangers, men and women, ring the doorbell at 8 AM. When they arrive I am in nightclothes, Mother is in a housecoat, our hair is uncombed, teeth are not brushed, makeup is not applied, beds are not made. They are the helpers; we are the helped.


My mother has not lost her sense of social correctness.

It is Dad's 83rd birthday. Will it be his last? We lift him into a wheelchair and take him out to dinner. My mother feeds him: "Come on, Carl," she says, "finish this last bite of broccoli." In the restaurant, my mother is self-conscious, wondering whether the other patrons are turned off by the nursing-home appearance of our table in the corner. I don't care. Mother cares a lot. I turn and look at Dad, who has chocolate ice cream smudged across his face. I turn back to my mother and say something that makes her laugh.


Goat lady.

One day, 44 years ago, my dad learned that I had joined other children in tormenting an older woman who had a goat tied to a tree in her yard. We kids had decided that she must be a witch and so had every right to taunt her. "Goat lady, goat lady," we chanted, as we threw empty cans at the goat. My dad greeted me that afternoon at the large, gray-pillared front porch of our home, car keys in hand. I had tormented a witch, who happened also to be Dad's client. He was an attorney, and soon we were on our way to the goat lady, to whom I would apologize in person. I imagined her huge nose, long fingernails, raggedy clothing, and mean disposition. But I saw that she was in fact rather grandmotherly, which turned my terror into shame.


Do not resuscitate.

My dad has Parkinson disease. He loves chocolate ice cream, but not nearly as much as he loves my mother. He probably doesn't know how exhausted she is. He says he may not be around much longer. Most of the time his voice is barely a whisper, but I hear these words clearly. There is a do-not-resuscitate order on the refrigerator, but we need no reminder that this disease takes him away from us, daily, bit by bit. One day we will have to love him more than we ever have and let him go.