That Went Well: Adventures in Caring for My Sister (15 page)

W
hen Michelle yelled at me that I was a raging codependent, I decided to find out exactly what that condition is, and researched it. Here’s what I’ve come up with so far.

Codependency means you’re hooked on having someone depend on you. In other words, you need desperately to be needed. You hover around people, hoping to be helpful. In other words, you are pathetic.

The condition starts in childhood, they say, when you see extreme stress in your family and you begin to think it falls to you to fix it. You try and try to make the problems go away, and they just don’t go away.

Some romantic twit has written a song that tells you to make someone happy, and then you will be happy, too.

I’ve spent most of my life trying to make just one someone happy, and it has made me a slightly crazed woman with a lot of headaches. I know it’s nice to try to accommodate other people’s
needs, but some of us take it way over the top. I’ve devised my own test for this condition.

How to Tell if You’re Codependent

1. Do you lie awake at night, furious at your sister’s helper who wouldn’t let her have a third ice-cream cone, even though you know that she has diabetes?
   
2. Can you go to a family party and not ask if they’ll please invite your special-needs sibling? And when they do (with a sigh), are you surprised to find that the sibling didn’t want to go anyway?
   
3. Can you buy yourself a purse without buying your sister a purse, too? How about a wristwatch? Can you get a manicure without ordering one for your sister, too?
   
4. You are the speaker at a luncheon. You get a phone call ten minutes before you’re on, and the news is that your sister has wet her pants at the sheltered workshop. No one else is available to go pick your sister up or to bring her dry clothes. Do you:
   

   a. Leave the luncheon with apologies and go pick her up?
   

   b. Call the workshop and tell them that you bet she really didn’t wet her pants? She has just claimed to have wet her pants because she’s bored and wants to go home. You bet that somehow she intuits that you’re doing something fancy and she wants to make sure you don’t do it. Hang in there: staff will be along in two hours to pick her up.
   

In the last case, I want you to know that I chose answer b. I was also right about her pants.

Because of past sadness about neighbor children making fun of Irene, I am nuts on that issue too. Children who tease other children, or bully them, bring out the psychopath in me. I myself was bullied by Mean Merrill Hall, who would push me down and wash my face with snow, and I have never gotten over it. When my daughter Marriott was in third grade, a boy who sat behind her, Grant, had a little crush on her, and he did what most boys do in third grade when they get a crush on a girl: he terrorized her. He stuck pins in her, pulled her pigtails, and pummeled her with snowballs on the way home from school. One day she called me from a friend’s house, imprisoned in there. Grant was waiting outside with his buddies, snowballs in hand. Marriott asked if I could come pick her up. I did. The boys saw me coming and scattered.

However (and this is why I need so much help on so many levels): the next day, after school, I drove near Grant’s house and waited for him to show up. I jumped out of my car, grabbed him, and shoved him against a tree, pinning his arms. “Are you Grant?”

He looked stunned. “Yes.”

“Well, Grant, I am Marriott’s mother. I want to tell you right now that if you so much as get
near
her again, in school, out of school, wherever, I will come and I will find you, and you will not like what happens next. I will know if you ever touch Mare again. See, Grant, I really, really hate bullies. And you are a bully. I have people watching you. Is there anything about this conversation you don’t understand?”

He shook his head, his eyes wide with alarm. I let him go then. I told Mare about it at dinner. “Oh, Mom!” she cried, embarrassed.

“Never you mind, Mare. He will not bother you again.”

The next day at school, Grant did actually speak to Mare, quietly and politely. “Mare? Your mom—”

“Yes. My mom.” She shook her head.

Grant grinned. “She’s so
cool!”

Years later he came to a party at our house. He stood in my doorway, all six-feet-four of him, looking down at me. He could have snapped me like a twig. “Mrs. Dougan? I’m Grant.” Then he laughed and hugged me.

I am fortunate that so many people in my life have forgiven me for marching into untold hells for what I consider a heavenly cause, like Don Quixote.

“Professionals” tell me that I enable my sister to be dependent and needy. They’re probably correct. But in my defense, I also try to empower her to lead a more satisfying life. There’s a huge difference here, in my mind. You can’t completely force a brain-damaged person into self-sufficiency, I don’t care how many courses you’ve taken on the subject. Try living it every day, and you’ll see.

Oddly enough, through watching me care for Irene in my over-the-top way, my daughters feel it is their responsibility, too. If I am hit by a truck, they will both be right there to watch out for her, and hire good companions, and be in charge of her program. When I gently broached the subject of what will happen if Irene outlives me, my whole family chimed in: “We’ll be here! We’ll take care of her! What were you thinking?” They were horrified that I would not consider them as my backups. “In a flood,” Paul said, “who do you think is going to go get Irene? Her social worker? Of course we’ll be there!”

And through years of expensive therapy, I learned (duh): I have
a right to make myself happy, too. And if that means insisting on a clean environment for my sister by hiring a cleaning professional, so be it. The “experts” can shake their heads and say Irene should do it all herself. I have come to believe they’re just wishing they could have a cleaning lady, too, and I stand my ground.

There’s another problem with being so extra kind to others. We Who Care Too Much absolutely attract those who crave extra care. I swear they can sense us from miles away. Just like heat-seeking missiles, the needy find the need-to-be-needed, and we go into our dance.

The good news about this strange habit enjoyed by so many of us is this: we really do make the world a nicer place. One professional says, “Could it be that people who struggle with that catchall word ‘codependency’ are really just extra-nice people?”

The bad news is, it tends to make
us
sick. So in an effort to get over my hypertension, sore shoulders, and headaches, I am working on myself all the time. This does not mean I wouldn’t rush to help someone who fell down. It just means I don’t go around
looking
for people who fell down. There’s a difference. I think I really used to do this. It just made my day to help someone.

I found a lovely book for the likes of us. It’s called
I Don’t Have to Make Everything All Better,
by Gary and Joy Lundberg. My favorite suggestion they have for us is this: when someone comes to tell you the problem, hoping you’ll jump in and fix it for them, you say, “My goodness, that really is a problem. What are you going to do?” Their point is, this empowers the person rather than weakens them. Another book,
How to Talk So Kids Will Listen and Listen So Kids Will Talk
, by Adele Faber and Elaine Mazlish, was given to me by my daughter Marriott, now a mother herself, who gently pointed out to me that she did not
need me to tell her what to do in every single situation. Her big sister Kate thanked her profusely for giving me the book, but still asks: “What happened? Did you throw it away?”

Here’s the lesson I need to learn from these books: when people tell me their problems, they aren’t really hoping I’ll fix them. They just want me to listen, to get it, and not solve it for them! What a concept! I’m in the autumn of my life, and no one ever pointed this out to me before.

As to my sister, I know she can’t really fix a lot of her problems, and wants me to solve them for her, but every day I work toward referring these problems back to her (“What are you going to do about it?”) or to her staff. Then I turn back to
my
life.

My sister is a walking ball of needs (“Can we go get a Slurpee? Can you change my quarters for me? Can you come take me for a ride? My lightbulb needs changing. My lamp is broken. My ear hurts. I have a hangnail. My knees hurt”). I make a mental note to refer some of these things to staff, and tell her we’ll get them handled one way or another.

But sometimes Irene wants her needs attended to right away. Just last week, around noon one day, I called to check on her.

“Hi, Irene, how’s it going?”

“I’m mad. I’m all alone, and I’m hungry!” (She begins to cry pitifully.)

“Where’s Kay?”

“Gone! She left me!”

“Did she come this morning? Did you get breakfast?”

“No! No one! Nothing! I’m here all alone!” (Sobbing now.)

My head starts to ache, anger stirs my adrenaline; I hang up and try to get Kay on the line, but she’s not answering her cell phone. I’m already thinking of how fast I can get an ad in the
paper for a new helper, because surely Kay is going to be fired. I make a sandwich and head up to Irene’s house, where I see Kay just pulling in.

“Where have you been?” I ask her.

“Getting our lunch at the grocery store,” she answers.

“But you never came this morning.”

“What are you talking about? I came, helped her fix breakfast, and then told her we were going to buy a new telephone, because hers was broken. She got mad at me for some reason, and threw the phone at me, just missing my head. So I left, and have been getting the new phone and our lunch.”

I was holding the lunch I’d made Irene and looking pretty stupid. We both went inside to confront Irene. “You lied to me, Irene,” I said to her.

“Yeah, I got breakfast already. Is that my lunch?” she said, looking at the sack I was holding and also the sack Kay was holding.

Two lunches. Exactly what she was aiming for, once I’d called her. Believe me, she is no dummy. (No, she did not get both lunches. I ate the one I made for her. And then the one I made for me.) At times like these, she manipulates all of us any which way she wants. Do you suppose she has
War and Peace
stashed under her bed, and this is all a big show for more care and attention? How can she keep outsmarting me?

One thing I know for sure: she’s got my number. She knows exactly what buttons to push to make me angry on her behalf, and she’s going to use them every time she can. Sometimes it’s justified anger. A lot of times, I’m finding, it’s not. And I’m learning to be patient, hold still, breathe deeply, find
all
the information, and only then decide whether to get angry or to laugh. I surely prefer the latter.

Magic Moments

Irene and I were driving to the alterations lady to get Irene’s new blue jeans hemmed and fitted. Irene had been particularly demanding that day, asking me every two minutes to dial a phone number for her, could I look at her doll’s torn dress, get her a Band-Aid? Did I have another diet soda, could I help her zip her wallet, did I have some stamps for her postcards?

By now I was a basket case. We stopped at a red light. I looked at myself in the rearview mirror, not a pretty sight, and said to Irene, “Look at me. I think I am dying of stress from taking care of everything you need!
Can you stop asking me to fix your life for one damn minute?”
She slowly turned and looked at me.

I sank into self-pity and drama, not one of my better moods. “What will you do,” I asked her, “if I die first, huh? Just die from having to wait on you every minute? What will you do then?”

The light changed. We moved on in silence. Irene appeared to be deep in thought. Gazing through the windshield, hoping to comfort me, she said, “
I
might die soon!”

Feeling stupid and foolish, I held her hand. “I don’t want you to die, honey. I’m sorry. I love you. I just got too busy this morning, and it made me grumpy.”

I thought we had a little loving moment there, but then she held her finger up. “My Band-Aid is coming off,” she announced, wanting me to give her a new one.

Unfortunately, it was her middle finger.

I
rene picks up the bowling ball and steps forward, holding the ball at her side as if it were a heavy purse. She stops at the line and slowly bends over, putting the ball down next to her and giving it a little roll. The ball takes forever to go down the lane. You can’t believe it’s even moving at all.

Very often, it knocks all the pins over. She turns around, tickled pink, her fist raised high. “Strike!” she yells, and then, clapping her hands all the way back to her seat, announces, “I’m going to beat you!”

For her birthday one year, she said she wanted a bowling party. So we invited maybe twenty of her friends to come bowl with us. The alley was a huge facility with many lanes. When Irene made her first strike, the whole party cheered. I was standing at the back of the facility ordering pizza. One of the cashiers asked me, “Is that girl, um, special needs?”

“Why yes, she is. Why do you ask?”

“Because,” she said, “I have never seen anyone get so much pleasure out of making a strike, or having so many friends root for her, and I would really like to work with people like that. Can you tell me how to get started?”

Sometimes Irene with her friends is love made visible.

And sometimes it isn’t.

One year, she decided she could be on a bowling team for Special Olympics. The first day of team practice, one of her teammates accidentally picked up Irene’s ball. Irene hauled off and smacked her, and that was the end of Irene’s bowling career on a team.

But when good friends call and say, “I want to see Irene,” they usually go bowling. And the worse they are at bowling, the happier Irene is.

Irene loves sitting on her porch watching the world go by, calling out hello to passing neighbors or complete strangers. Her favorite TV shows are reruns of
Little House on th
e
Prairie
and
ER
She loves Diet Coke, corned beef, fried chicken, candy of any kind (which she cannot have because she’s diabetic), spaghetti (“buscetti” is how she says it) with butter and cheese, and shrimp salads.

Her speech patterns are halting and she mispronounces lots of words besides spaghetti. Magazines are “mazzaguns.” Whispering is “swippering.” Yogurt is “orchid” no matter how many times you say it correctly, no matter how many times she tries to repeat it.
The Nutcracker
is “
Nacker
.” (“You got my
Nacker
tickets for this year?”) Now our whole family reads mazzaguns, eats buscetti, likes orchid, swippers to each other, and loves to see
The Nacker
at Christmas. She carries huge purses, so they can hold her “’portant papers.” She watched Dad and other people with brief
cases carrying something that must have been very important, so she wants these, too, even though what she’s carrying are coloring books. Now our family looks at each other and smiles when we see men or women fussing over their “’portant papers.”

Her influence on us is huge. If she looks a little sad, I ask what’s wrong, and she’ll reply, “I’m ’scouraged.” Now we all describe ourselves as ’scouraged on a bad day. She likes to sit close to me and say, “Shoon me talk.” (Let’s you and me talk.)

When she remembers something I have long forgotten, I ask, “How did you possibly recall that?” and she answers, “I got it in my brain!” Now if my girls or their husbands challenge one another about some fact, they hold firm by saying, “I got it in my brain.”

Irene loves to go out to eat, but the restaurant can’t be too noisy or crowded. If it is, she makes a fist and starts hitting her cheek, or she will bite her index finger knuckle, trying to make it bleed. These have become signaling gestures in our family, from one member to another, an in-joke when we’re frustrated.

Her dreams include the following careers: librarian, nursing-home assistant, grocery checker or bagger, elementary school teacher, and hospital nurse with little children. Each of these is very hard to accomplish if you can’t read or write, but we have tried to give her volunteering opportunities in some of these locales. The jobs have not lasted long, as she tired of them easily and did not want to go every week, just some weeks. In good weather. When she felt like it.

Like we all feel about work.

Now that she’s in her sixties, Irene has let it be known that retirement is the life for her. She goes to movies, loves window shopping in the malls, and attends a weekly watercolor class.

She worries about children in hospitals. “Those children…can’t go home for Christmas?” she asks, over and over.

“Probably not,” I answer. “Would you like to do a Christmas project for them?”

Her face lights up. We go buy tiny teddy bears at the local hobby shop, then call the hospital and ask if we might have someone put them on the children’s breakfast trays on Christmas morning.

The bureaucracy rears up and someone says, “Well, you’ll have to come in and fill out an application to be a volunteer here, and then you’ll have to ask permission from the superintendent of volunteers to be allowed to do this Christmas morning.”

I thank her for her information and hang up.

We do nothing of the kind. On Christmas morning we walk into the almost deserted lobby of the hospital, walk straight to the kitchen, and hand one of the cooks our basket of teddy bears. “If you feel it would be okay, we’d like you to put one of these on each tray, for any meal you choose.”

“These are great!” is the reply. “Thank you! The kids will love ’em!”

We’ve been doing it every Christmas for five years.

Then one of the hospital’s doctors, an old friend of mine, writes Irene a thank-you note on hospital stationery, which Irene shows to everyone she can, proof that she can be Santa Claus, too.

As for Santa and the Easter Bunny and the Tooth Fairy, she tries to act very grown-up about it all. But she still suspects they really do exist. And her evidence is that every Christmas morning, her stocking is filled to the brim, candy canes and all.
Now when a tooth falls out or is pulled, she still puts it under her pillow, and amazingly enough, in the morning, her tooth is gone and a Sacagawea dollar is in its place. Plus, the Easter Bunny always leaves a basket at her front door, so what’s not to believe?

She was a little discouraged last Christmas, however. She had asked Santa for a pair of walkie-talkie phones. Santa bought the $40 model from Radio Shack, thinking that she could enjoy talking to her companions from neighborhood places. When she opened them, she asked us to tune her in to her friends the policemen and the firemen. She had in mind being able to hear their bulletins and then plunge right in and have a chat with them. After she realized this was not going to be possible, she put the walkie-talkies down and has never used them again.

Every time I suggest that
she
play Santa or the Easter Bunny, she agrees and makes plans to do it for my grandchildren. But then she asks, “And he won’t forget me?”

I can’t tell if she’s telling me I better darn well come through or whether it’s still alive in her mind that they exist. Things she says lead me to believe that the latter is true: “Leave that back door open! Santa might come through there!” “I’m going to hang up stockings for my dollies. Santa might fill ’em?”

Yep. Santa does.

Her latest volunteer project is going to a local nursing home and volunteering for a few hours on Saturday mornings. She does errands in the home for the patients, delivering things from room to room, with her companion Janice along
for guidance. Mostly she plays bingo with them, and just loves it.

Irene Does Special Olympics

God bless the Kennedys for starting Special Olympics. Irene has participated in softball, fast walking, swimming, and—her very favorite—ice skating.

She really shone one year. When they called her name, I clapped and whistled as she came onto the ice. To my horror, I watched her skate right over to the judges, where she promptly shook each one’s hand, smiling and chatting with them. I was too far away to stop this inappropriate lobbying, so I held my breath and waited to see what came next. She performed her routine very nicely, and at the end of her event, she was awarded a silver medal. I was allowed to walk out on the ice to get her picture. I heard the judge say, “Congratulations, Irene. And to think it’s your birthday, too!” She just beamed.

A couple of summers ago, she participated in the fast-walking race. Her competitors were much shorter than she, and I thought she would take them easily.

But just before the event, she bought herself a hat that was a large stuffed brown-and-white cow. She thought it lent her a certain cachet for the race. I tried to talk her out of it, but she would hear none of it. As the race began, the hat fell over her eyes, and she had to stop and adjust it. I was on the sidelines, yelling at her to look at her competitors coming up right behind her. She didn’t seem to care, she just wanted that hat to look its best. She came in second again, and was thrilled. A medal is a medal.

The Food Court Tango

Irene loves food courts in malls. So many choices, and she can see the pictures of the food. In a nice restaurant, she has to have me read a menu to her and try to picture what the food will be like. So we often choose malls with food courts. I go for the Japanese; she goes straight to McDonald’s.

This is not for McDonald’s gourmet delights. This is because she wants the toy of the month.

The young man taking the order can’t wrap his mind around what she wants. “She wants a big burger and the toy,” I tell him, taking a deep breath and letting it out as I anticipate his reply.

“She wants a Happy Meal,” he says. “Comes with the toy and fries.”

“No,” I tell him. “Happy Meals have tiny hamburgers for little kids. She wants a big burger, no fries, and a toy.”

“Toys come with Happy Meals,” he informs me again.

“That is right,” I assure him, “but we want a burger, a drink, and a toy.
We will pay extra for the toy.”

The young man frowns, trying to think why Irene would want the toy. If it’s for a little kid, then they want the Happy Meal, he is thinking to himself. Why would a big lady want the toy?

People in line behind us are taking interest. They want their turn, and they wonder why we need the toy. I want to turn to them all and yell, “It’s a free country! Why can’t we have the toy without the Happy Meal, especially if we’ll pay extra? How hard can this be?”

But I don’t. I just breathe deeply and take out my wallet,
showing the guy I am really going to pay for everything, and he can reach down and get a toy without the Happy Meal included. I know we have finally won when he says, “What size drink, then?”

We settle down at our table in the food court, two aging ladies, one enjoying her teriyaki chicken and vegetables, the other playing with her little plastic toy and munching on her burger, watching as the working people grab their lunches before heading back to their offices. Now and then one of the food court’s janitors stops to say hi: one of Irene’s buddies from a sheltered workshop long ago, now in this supported-employment job, while a job coach supervises nearby.

The Game of Golf

“We could go play golf sometime?” Irene asked me.

“Sure. Why not? I’m trying to learn too. Hey! Let’s take lessons together!”

Out there on the driving range, the pro looked a little nervous about teaching Irene anything, as she had been talking to him in her halting, repetitive way. “Let’s start with you, Terrell,” he said cheerfully.

I did everything he told me to, wrapping my fingers around the club correctly, knees a little bent, fanny a little out, and swung and swung and swung. I never hit the ball. Could not hit it. Ever.

After twenty minutes, the pro turned to Irene, who had been watching the ducks on the pond behind us. She was holding her club sort of like you’d hold a broom. “Irene, come on up here
and let me put this ball here on this tee for you. Step right up, that’s right, now, I’ll show you how to wrap your fingers—”

Just then she swung her club and there was this loud
thwack
and the ball sailed maybe twenty yards. We all stood there, amazed. Irene began to laugh and look at me. She did it several more times; not every time, but enough for me to conclude this: Golf is a game for people with special needs.