Mother and Dad on their honeymoon
Then she apologizes to the singer, telling her that Elvis always made her laugh. The nurse, meanwhile, having noted my mother’s gold crucifix and St. Francis of Assisi medal says to the singer, Perhaps Mrs. Tirone would like something less secular.
My mother says, Something Catholic.
The woman immediately segues into “Oh, Lord I Am Not Worthy,” a hymn that has always depressed me.
Fortuitously, my daughter arrives. She scopes the situation and asks if there’s a piano. The hospice nurse says, Of course, and goes and sees to one. Again, my mother expresses to me how much she is looking forward to Margaret’s visit so she can tell her about that too: Mickey, they’re going to bring a piano! My mother has now addressed me directly for the first time in a year.
Her granddaughter does not play a hymn once the piano is rolled to my mother’s door. She plays one of my mother’s favorites, “Bewitched, Bothered and Bewildered.” Somewhere in the middle, my mother closes her eyes and falls asleep. Now my daughter plays more gently and the old Rodgers and Hart tune becomes a lullaby. I can’t imagine what life would be like without my sentimental, pure-of-heart, take-the-bull-by-the-horns daughter.
A FEW DAYS after entering hospice care, my mother is dying. I hear a snippet of conversation between her and Auntie Margaret: Margaret, don’t you wish Liberace had lived long enough to be on Oprah? Wouldn’t they have been a hoot together?
Within twenty-four hours of my eavesdropping on her and Auntie Margaret, she is unconscious. A half-minute passes between each labored intake of her breath. I am taking in long slow cleansing breaths myself, the kind I learned to do in Lamaze class. Cleansing breaths accomplish nothing toward relieving labor pain but they give you something to do other than scream, which ticks off the nurses as they are always in deep conversation about, say, Princess Di. When not in labor, I come to find that cleansing breaths keep me from passing out, which I am afraid I am about to do. My mother, my daughter, and I are fainters. My mother faints on the sixteenth hole at the Greenwich Country Club when she has a tournament just about sewed up. I faint in front of an audience of 250 people come to hear me and Howard Fast talk about our respective books. Howard is so impressed. He says later he enjoyed laying his head against my chest because everyone thought I had dropped dead and he felt it was up to him to verify that. When my daughter is a high school senior, she faints at an airport in South Carolina and ends up in deep shit. She’s saved her baby-sitting money to go to Parris Island, where her boyfriend is becoming a U.S. Marine; she’s supposed to be sleeping at her friend’s up the street.
At the Branford Hospice, I watch my mother draw her last breath. I don’t faint. I stand up and tell her good-bye.
I bring the Vera scarf home.
It is a struggle to get my father to agree to attend my mother’s funeral. He won’t leave Tyler even though Auntie Palma offers to stay with him. Auntie Palma missed my wedding to stay with Tyler. Uncle Guido manages to convince my father to go. Uncle Guido says to me, Your father is taking this very hard.
At my mother’s wake, a large number of men—young and old—shake my hand and recount mixed-double golf tournament victories at various country clubs across the state, victories they attribute to their talented partner, my mother.
Do you play? several ask.
No.
Too bad.
But one says, Too busy writing?
Yes.
MY MOTHER is dead two years before my father is diagnosed with Alzheimer’s. Here is Alzheimer’s in a nutshell: After my Auntie Palma and Uncle Guido check on my father one evening, get him into bed, sure he is safe, they leave him. They will come back in the morning. That is the routine. But on this night, a few hours later, the first snow of winter begins to fall. My father becomes aware of the snow. When I am a child and we have our first snow of the season, it always seems to happen at night. If it isn’t too late and my father knows Tyler and I are both still awake, he comes up and gets us out of bed, brings us down to the kitchen, opens the back door, and with a bit of a flair switches on the porch light. Tyler and I watch the clouds of white flakes whirling and swirling in the glow of the bare bulb. It is such a huge thrill. (Even now, the season’s first snow gives me a rush.)
On this night, this Alzheimer’s night, when my father somehow feels the arrival of snow in his bones, he goes to the back door, turns on the porch light, gazes at the thick flakes, and then goes outside. He goes outside barefoot in just his pajama bottoms. He never wore pajama tops. He closes the door behind him and locks himself out.
By some great good fortune, our neighbor, a reclusive fellow whose name is Eddie, sees the back porch light go on next door. He goes to the window, and there is my father walking around the house bare-chested and barefoot in the snow. He dashes to his door and calls my father into his home. No one I know has been in Eddie’s house.
Eddie is a year older than me. Growing up, he would watch the neighborhood children play from his window. He never came out of the house except to go to school (and later to the Aetna, where he worked as a bookkeeper for decades). One summer day, we children become audacious and knock on his door and ask his mother if he can come out and play baseball with us. His mother is reclusive too. She says, of all things, Yes. The next thing we know, Eddie is walking toward us up the driveway that separates my house from his. He is carrying a bat. He tells us, My mother says I can play, but only if we use my bat.
The bat is a Statue of Liberty souvenir bat. It is twelve inches long. He is serious.
I say, Play ball!
My other neighbor, Alan Griggs, the smartest boy there is, suggests we use a wiffle ball instead of my father’s softballs from his days playing second base for Hartford’s Industrial League. We consider Eddie’s bat and agree. Alan runs across the backyards to get one from his house on Coolidge Street, two doors from where Irene’s body will be found the following December.
The outfield moves way, way in. Although we are having a great time, Eddie never gets a hit because he swings his bat one-handed and only after the wiffle ball is already nestled in the catcher’s hands. Then, without our noticing, Eddie segues from his position in right field back into his house. When we do realize he’s gone, we just continue on with the game because it is such a great challenge to try and smack a wiffle ball out of the infield using Eddie’s bat. (The rule we make up for the game is that an infield hit is an out.)
When the game’s over, we return the bat to Eddie’s mother. She tells us he had a lovely time.
The police no doubt questioned Eddie as well as Tyler when they were looking for Irene’s killer. Two teenaged boys next door to each other, both dealing from decks of their own unique designs.
The night my father locks himself out of the house in a snowstorm, Eddie is watching and rescues him. Then Eddie calls my Auntie Margaret. She gets in her car and races over. Eddie meets her at his front door and she brings my father home, gets him back into bed. The next day, she calls me and tells me what happened.
I drive the seventy-five miles to Hartford, sit in the kitchen drinking coffee with my father, which he makes on the stove in an old tin percolator with a little glass ball perched on the lid. When the coffee bubbling up into the glass is approaching the color of mahogany, my father deems it’s brewed. Chock Full o’ Nuts. Delicious.
I ask him why he went out in a snowstorm. He says sternly (as he is the father and I am the child), Mickey, how can I get into my house if I don’t go out?
Alzheimer’s in its initial, relatively easy stage, when all that’s missing is the car keys and logic.
I send my old neighbor, Eddie, a bouquet of flowers. He sends me a thank-you note telling me the flowers are beautiful, so special to have them in winter.
forty-six
TYLER’S DIABETES continues on its destructive path. He has to have his foot amputated. Within months, his leg below the knee. My father’s Alzheimer’s, on it’s own destructive path
, prevents him from understanding that he can no longer take care of Tyler. I try to find services for my brother and he is given intelligence tests. A state psychologist tells me with Tyler’s pools of knowledge he doesn’t score low enough on the tests to qualify for services. Foolishly I ask, What do I do?
The psychologist says, Frankly, unless you care for him yourself, the only alternative he has is to live homeless on the streets.
That’s nice.
Finally, a social worker named André tells me that since Tyler has no assets, he qualifies for Title 19. I don’t know what that means. André explains and I apply in Tyler’s behalf. Because of the diabetes, Tyler is also qualified to go to a nursing home and I won’t have to sell my house to pay for it. Even more important, André says to my father: Tyler now needs insulin shots to control his diabetes—he has to have twenty-four-a-day medical attention and will have to be admitted to a nursing home.
My father protests as he’s always done when someone so much as hints at putting Tyler away. Finally, though, knowing he won’t be able to see to measure insulin into a syringe, he gives in. Eyeglasses with a stronger prescription haven’t helped him because he is forgetting the mechanics of an important skill—seeing. He tells everyone that he has no trouble managing Tyler—he’s managed him for fifty years—but he’s not a doctor so he can’t take care of his son’s diabetes. Face saved, thank you, savior André.
My father wasn’t always in such a parasitic relationship with my brother. When Tyler was five, he toured the state hospital for the mentally retarded and simply made the decision that it was up to him to care for his little boy. It was during the time the retarded were kept in pens, naked.
André also sees to getting my brother out of a wheelchair and fitted with an artificial leg. I tell André I wish he’d been around for my grandfather. When my Italian grandfather’s leg was amputated he told his doctor to get him a wooden leg. The doctor said—in that condescending way they learn so well it’s as if they take ten courses in medical school on condescension—Mr. Tirone, it would take too long to fit you and construct a prosthesis.
How long? asks my grandfather.
A year.
My grandfather says, I can build you a house in a month and who says I’m going to die tomorrow?
The doctor slithered away.
André gets Tyler admitted to St. Mary’s Convalescent Home in West Hartford and I get him admitted to a research program at Yale–New Haven Hospital. Tyler informs the research psychiatrist there, Dr. Chris MacDougal, that he’ll be summering at St. Mary’s in West Hartford instead of Chalker Beach. Dr. MacDougal notes that on Tyler’s chart. While the doctor is noting, Tyler swipes a photograph of the man’s children off his desk and sticks it into his shirt, giggling.
Dr. MacDougal says, Tyler, did you take a picture from my desk?
Nope.
Put it back.
Okay.
Tyler puts it back. The doctor reaches into his wallet and takes out his kids’ school pictures. He hands them to his patient.
You can have these. They’re old.
Tyler is dazzled by the gift. I say, What do you say to the doctor, Totsie? (Totsie was the nickname my mother called him until he reached adolescence.)
Tyler looks past Dr. MacDougal’s shoulder and says, Fanks. (He never could pronounce th.)
While Tyler happily studies the pictures, Dr. MacDougal says to me, He misses life when the two of you were children.
The doctor accepts that his patients have no morals.
TYLER IS PUT ON fluoxetine (Prozac to the rest of us), a drug the Yale psychiatrist has found to relieve, somewhat, the autistic’s drive to perform obsessive compulsions. Within weeks of taking the drug, Tyler, when frustrated, continues to raise his wrist to his mouth but miraculously, stops short of chomping down on it. Thank you, Dr. MacDougal. (When Dr. MacDougal observes Tyler’s “rounds”—the kishing and shoe tapping—he says to me, Your brother’s rounds are a lot more productive than many of my colleagues’.)
Dr. MacDougal suggests a support group for me. He smiles: Better late than never.
I think, What the hell?
My group consists of siblings of autistic adults. Not autistic children. Autistic children suddenly have more services available to them than you can shake a stick at, as opposed to adults previously deemed to be retarded, now deemed autistic, who have none. Our group leader tells us our purpose will be to explore the damage done to us.
I say, I don’t feel damaged, and I’m thinking, If he wants damage, he should check out my childhood friend, Joyce, whose father ate scraps of paper while the police broke her door down.
Turns out, none of us feels damaged. Leader is skeptical. To show us that we are in denial, he begins the first meeting by suggesting we jump right into the deepest end of the pool and discuss the humiliation we endured. The group, as one, lowers its eyes. Leader’s specific topic is anal digging, something certain mentally disabled people—and others I would have to guess—take great pleasure in. Sort of a side dish to masturbation.
Our sibling group talks about the tight-waisted pants, the pulled-to-the-limit belts, the homemade restraints utilizing Ace bandages, none of which sways an autistic person bent on anal digging or whatever other pleasure he might find in his body. I say my brother had to wear a bathing suit when he took his bath and another sibling says her sister was bathed fully clothed. Which was nothing compared with her menstruating from one end of the house to the other. Another, a young lawyer, confesses to the group that she was the one who brought up the anal digging problem to Leader earlier. Now she apologizes to us. We forgive her. She says she told Leader how nothing could get her brother to stop. She describes to us a trip to the Special Olympics where he participated in the fifty-yard dash and the broad jump. The lawyer noted that when he jumped, his sneakers might as well have been glued to the ground. She says, During the fifty-yard dash, he stopped and sat down ten seconds into the race unlike the Down syndrome kids who zipped past him like a herd of elephants.
Her brother is still declared a winner, though, as are all participants, in both events.
The lawyer then describes the scenario driving home. She says, Up front, my parents were beaming, so happy that my brother had won a gold medal and a silver one. And I’m in the backseat trying to keep him from cramming the gold medal up his ass. He knew gold from silver, let me tell you. Gold would get the prize spot.
I don’t know who is the first to snicker. I think me.
My support group, soon in hysterics much to the wonder of Leader, decides our war stories won’t help us as much as heading for the nearest bar. Leader makes an excuse not to join us. We go to Toad’s Place and drink and laugh the night away while rastas play ska. It is clear that all of us love our deranged siblings, because we begin telling loving tales and I impersonate Tyler’s rendition of Cinderella. Even though these brothers and sisters make our lives complicated, often miserable, they also make us happy.
One fellow says, My brother will practically kill himself to stop a bout of anxiety, but, I’ll tell you this, he’ll kill to protect me too. But yet, he’s as sweet as a teddy bear . . . well, in his own way. He’s my Boo Radley.
We all drift for a moment or two, into memory. I had a cat named Streakie for a short time until she was hit by a car in front of my house. My parents extended their sympathies to me but Tyler kept saying, Sister, don’t commit suicide. Please don’t commit suicide.
For days I’d hear him mumbling to himself, Good thing we don’t have any howitzers in the house.
Poor Tyler was imagining me blasting myself into oblivion with a howitzer.
My fellow siblings and I leave Toad’s Place after some serious all-around hugging and I reread To Kill a Mockingbird and decide, too, as my fellow support group members had, that Boo Radley was autistic, sequestered by his father for his own protection, but not successful enough to keep Boo from killing a bad man to save a young neighbor boy. Autistics demonstrate love
oddly, as oddly as they do everything else, but their love is mighty just the same.
MY FATHER VISITS Tyler every day, twice a day, at St. Mary’s until he injures himself in a fall at one o’clock in the morning in front of Jack’s store at the corner of Hillside and New Britain Avenue. He’d probably gone out to buy a couple of Dutch Masters. A woman coming out of the Brookside Tavern finds him. She cradles him in her arms until an ambulance arrives and takes him to Hartford Hospital. Since he has forgotten his wallet—forgotten where he put it, forgotten he owns a wallet, forgotten what a wallet is—he has no identification, but a forbearing person at Hartford Hospital gets his name out of him and then someone says, Hey, that’s Margaret Kelley’s brother-in-law!
Auntie Margaret to the rescue.
I make the dash to Hartford, where my father is still in the emergency room. I pour out my soul to some poor innocent nurse, telling her that my father will be killed if he keeps wandering, and then she sighs and says, I hear you. She calls the nursing home of my choice and claims some kind of life-threatening emergency. I hug her.
Within hours I am settling him into a nursing home on Hillside Avenue, a mile from his house in Hartford. I park his last Ford, a Taurus, in the lot across the street and ask permission of the nursing home director to leave it there. She says it’ll be okay. My father keeps his car keys in his pocket; he will now check out the existence of his car a thousand times a day, which gives him comfort.
Neither Tyler nor my father agrees to visit one another at their respective nursing homes, I don’t know why. When I’m with my father, he always says, How is Tyler doing? I tell him Tyler is just great, which is true—he’s adjusting and his wrist is no longer chronically infected; it’s actually healing.
My father is not adjusting to Alzheimer’s: He reaches a point where he forgets how to walk: Look, Yutchie, says Uncle Guido, you put one foot in front of the other like this.
Girls of Tender Age: A Memoir Page 23
