That Went Well: Adventures in Caring for My Sister (14 page)

It’s just that sometimes, as we all do, she liked to take a left turn and not get on the second bus at all. After all, there were all those shops at the mall.

To All Employees of ZCMI Mall:

 

The person in this picture is my sister, Irene Harris. She has a mental disability and cannot read or write. She takes the bus to work in an incense factory three days a week. She loves the independence and the mall. But yesterday apparently she got hold of her checkbook, which must have two signatures, and went up to the Time Shop guys, and bought a $200 watch, asking the clerk to fill in the right amount. Then she went downstairs and signed up for her own cell phone by showing her ID card to the salesman at the cell phone kiosk. After she bought a purse from you guys at Deseret Bookstore, she went to Bruce down at the Beauty Spa and ordered a hair cut.

When Bruce finished, she said, “Oh, I don’t have any money,” and left. She had used up all her checks and just smiled at Bruce. I have gone round and returned the phone and the watch and thanks for tearing up the checks, and I’ve paid Bruce, who said he didn’t need to be paid because
he just loved being with Irene, but this is to ask you please not to let her do this again.

We try to watch and supervise her, but she also treasures her independence, and we try not to restrict her more than is absolutely necessary. My phone number is listed below, along with her helpers who work for me, and please call us if she is out on a grand shopping spree again.

Thanks for any help you can give us in this matter. And thanks for loving and supporting Irene.

Terrell Dougan

P.S. I did let her keep the purse.

 

Soon afterward, I bought Irene a cell phone. You’d think a cell phone would help, but think again. Now that she has one, here’s how it goes.

“Irene, hi! We’ve been looking for you! Where are you?”

“I’m right here!” she says happily.

“Yes, but where is here?”

“Right here!” She cannot believe we can’t tell where that is.

“Honey, what’s around you? Do you see a sign?”

“Yes!”

“Yes, good. Now what is on that sign?”

“It’s the sign for the bus stop!”

“Is someone standing by you?”

“Yes! Want to talk to him?”

“Yes. Put him on.”

She does. “Hello.”

“Hi. I’m her sister. Can you tell me where you are?”

And if he can, then I can take it from there.

What we soon learned was that she became very adept at calling any phone number she saw on any poster, just to chat.

The Incident of the Lost Dog

Lady Who Lost Dog:
Hello?

Irene:
Hi! This is Irene! Who’s this?

LWLD:
Have you found my dog?

Irene:
I saw his picture on a poster here! He’s a cute dog.

LWLD:
Oh, thank God. Where are you?

Irene:
I’m right here!

LWLD:
Is it by the bus stop on Tenth Ave? That poster?

Irene:
Yes! I’m here!

LWLD:
Do you see my dog right there?

Irene (looking at poster):
Yes! I see him right here! He’s cute!

LWLD:
Keep him right there! I’m on my way! Don’t leave there, okay?

Irene:
Okay.

 

The lady and her husband arrived at the bus stop in their car. Irene pointed to the poster and smiled. Then the lady asked where the dog was, and of course Irene pointed to the poster. Then the lady demanded to know where Irene lived, and since it was only two blocks away, she took them there. They came up her stairs and demanded to know where the dog was being kept. Kay said they were not harboring any lost dog. These poor folks took a complete tour of the duplex and the backyard, feeling sure Irene wanted some reward money or something. When it was finally clear to them that Irene just liked to dial numbers on posters and chat, they asked, “Well, what sort of fool would give someone like that a cell phone?”

Kay finally arranged with the cell phone company for Irene
to receive calls on that phone but not make them. At least now we know how to find her. (“Honey, where are you?” “I’m right here!”)

Irene knows exactly where she is.
We
are the ones who have a problem.

I continued to believe everything would be all right. I told myself so every day.

One day Irene and I were downtown and crossing Main Street. When we were halfway across Irene dropped her purse, and the light changed, so Irene ran to safety across the street, looking back anxiously at her purse on the street. She was sure the cars would run over her purse, with her money and her cell phone in it. She began to scream. A homeless woman was standing nearby, holding up a sign that said: “Family Struggling Please Help.”

Still screaming, Irene found a fire hydrant, where she leaned over and began banging her head on it. Everyone on the street was staring, dumbfounded. I looked at the woman and said, “Can I borrow your sign?”

She started to laugh, and then a homeless man with dreadlocks and a big backpack came loping across the street. He grabbed Irene’s purse, ran straight to Irene, and held it out to her. “Here! Lady! Here’s your purse! Stop bangin’ your head!”

She stopped, took her purse, wiped her tears, and thanked him. I gave them some money by way of thanks, as well.

We went home, and I kept thinking I could not cope anymore and that maybe I had made a horrid mistake in taking charge of her program. At the time I was too frazzled to realize all the color Irene adds to my days.

I am not a religious person. But that night, just like my father before me, I got down on my knees and asked for the Lord’s help.
I was crying, and I felt totally alone and scared that I was not up to this job.

I asked for strength and guidance. I told him/her that I was turning everything over to the higher power, and into its hands I commended my spirit. When I stood up, I remembered the last time I really prayed, instead of playfully shouting to my various gods in the universe. I had been twelve years old and we were driving away to a new house. I was looking back at my childhood home and my willow tree at 518 J Street, and asking to be allowed to go back there. I remember promising God I would do anything to get back there. And it occurred to me that when I was twelve, I was asking for my childhood home back. Now I was just asking for strength and guidance. Maybe that’s what a person should pray for, I thought. I mean, God isn’t Santa Claus.

I felt better, just asking for help, and the next morning I went to the phone book and called the Mormons, some of them the very same people we went to church with as children in our neighborhood. I told a woman on the other end of the line that Irene was going to be a new member of the ward, which is like a neighborhood parish.

She said, “Well, I just know Bishop Coles will be thrilled to have her.”

“Coles? You don’t mean Bob Coles?” I had dated this lovely man years ago in junior high school. He was always wonderful with Irene when he came to my house.

“Yes, Bob Coles. I’ll have him visit Irene this week.”

I hung up the phone and burst into tears. Somehow God heard something and was right there. The next Sunday, Irene and I went to Relief Society together.

The Relief Society of the Church of Jesus Christ of Latter-day
Saints, the Mormons, was formed back in 1842 by church founder Joseph Smith, who knew how powerful women were in healing and helping each other. It is an organization of women for women. If you are sick, they’ll bring food and tend your children. If you are new in the neighborhood, they’re on your doorstep with an elegant Bundt cake or hot homemade bread, offering themselves at your service. They were delighted to have Irene as a member. I told them I couldn’t come much myself, and they said, “Oh, that’s fine. Just have her helper drop her off to us, and we’ll take care of the rest.”

I had a writer friend in New York whose husband was an out-of-work actor. They were almost living hand-to-mouth. We were on the phone, and I said, “Gotta go. I’m taking Irene to Relief Society for her first time.”

“What’s a Relief Society?” asked my friend.

I explained it to her.

“I want one! I want a Relief Society,” she whimpered.

Of course these women live all through the neighborhood. When Irene goes for walks, I know they are watching out for her through their windows, and I know she is safe. Let me tell you: if your family has troubles, if there is flood, earthquake, or famine, I highly recommend living among the Mormons. They are the most organized, prepared, kind, and generous people I know. Even though I don’t go to church anymore, I think of them as my people. While I don’t subscribe to the theologies in their faith, and I get frustrated with their suppression of academics who ask hard questions, I adore their culture of community and caring. And I’ll hold up their homemade ice cream against any in the world. When a voter these days asks, “What can you do with the Mormons?” My answer is simple: you can count on them.

The Pink Prescription

I took one more step toward making a comfortable home for Irene. It sounds very farfetched and silly, but I had Irene’s bedroom painted Baker-Miller pink. In 1979, two officers at a naval prison facility in Seattle read the work of psychologists who found that a certain shade of pink had a positive effect on prisoners who were extremely violent. Officers Baker and Miller, at their wits’ end with these violent guys, got the paint color formula (very close to Benjamin Moore number 1328), matched it, and painted their receiving room this color. Ignoring the laughing remarks of their fellow officers about their sexual orientation, they put their violent prisoners in this pink holding cell for fifteen minutes. To their amazement, the prisoners quieted right down. They sent the results to the psychologists, who then proceeded to test it in other prisons, and now we have the color Baker-Miller pink, which is still in use today at many facilities to bring a little peace and tranquility to those who feel frantic and aggressive.

I’m not sure the Baker-Miller pink really worked. But it made me feel good about trying every avenue toward Irene’s improved peace of mind and calmer behavior.

There was still the problem of the children in the neighborhood. I didn’t want her to be the object of ridicule, as she was when she lived with Dana in a different neighborhood. Here, no one had teased Irene or been cruel to her, but the children were a little afraid of her, really. When she would call to them and wave from her front porch, they often ducked inside or around to their backyards. I had no idea how to fix that. I had to hand that one over to the higher powers, as well.

One hot summer day Irene called to say, “I’m having a lemonade stand. Wanna come?”

“Of course,” I said.

“I invited my firemen, too.”

“Honey,” I said, “the firemen have to watch out for fires. I don’t think they’ll be able to come.”

“Well, I invited ’em.”

An hour went by, and I decided to go visit her. I was afraid maybe the neighborhood kids would laugh at a grown lady selling lemonade, and I might be her only customer. So when I rounded the corner to her front lawn, my jaw fell open.

Two fire engines were parked in front of her house, and her front lawn was lousy with firemen, drinking lemonade. The neighborhood kids were climbing around the fire trucks, in awe of this special lady with her special friends.

The firemen had launched her socially for all time. These heroes show up in the most amazing places.

To Janet James, Owner, The Incense Factory

 

From: Terrell Dougan, Irene Harris’s sister

 

Dear Janet:

 

I want to thank you again for giving Irene the chance to work at your factory, and I hope you’ll let me explain about our current predicament. Irene loves garage sales, especially her own. Every Saturday morning in good weather she puts her card table up and displays a poster saying everything is one dollar.

Then she gets all the little stuffed animals she bought at All-A-Dollar over the year and puts them out to sell, along with other bits of costume jewelry and coloring books, etc. She has no idea about how much her initial inventory cost. She just wants money in her pocket. So apparently this summer her enterprise made her think of bigger and better things. She wanted to expand her inventory but had no real budget to do it.

So she began to think of your hundreds of boxes of precious oils to scent the incense. Irene began to take a few
home in her purse each day after work. When I saw her selling them, I assumed either you had given them to her or she had bought them with the few dollars she’s allowed to carry in her wallet. I had no idea the oils cost $10 a vial and you personally watched her filch some from each box!

To show you what an entrepreneur she is, she was selling $10 vials of oil for $1. We are extremely embarrassed that she chose to expand her inventory in this fashion, and I am enclosing a check for the ten vials she has stolen. If you find more gone, please let me know. I have asked her companions to frisk her every day when she comes home, and I certainly agree with you that she cannot be allowed to bring big purses to the factory! I am floored that you haven’t fired her already, and am grateful you’ll give her one more chance. I’m not sure she deserves it, and at the same time, I’m not sure she really understood that she was stealing. We have discussed the matter with her, and she says she understands that she cannot take the vials anymore. I hope this is true.

But my advice is, keep frisking on your end, and we will too. Among the new skills she is learning, such as bus transfers, I had no idea she would include having sticky fingers as a main goal.

Sincerely,
Terrell Dougan

 

 

Irene has had many different jobs over the years. Once, she cleaned toilets at Sutherland Lumber and made more than she’s ever made before or since. During that time, she was strolling around with as much as $70 in her pocket: all money she had earned and had a right to spend as she chose. It was, after all, her money. She was so excited the day she cashed her first paycheck with Sutherland for
$72. She invited me to lunch and chose the Red Rock Brewery, a place I had taken her the week before. That week, she had started hitting herself and yelling, “I don’t like it here!” So we left.

But now, she pointed at it and said, “Let’s go here.”

“You wouldn’t go here last week.”

“I changed my mind. I want to take you to lunch here. My treat.”

We went in and she said to the head waiter, “Two, please.” When we sat down she said, “You bring me the check at the end, please?”

During that lunch I felt as if I had a completely delightful sister. We talked and laughed over a delicious lunch. When the waiter brought the check, she pulled out her wallet and paid, somehow knowing that she’d still have a lot left over.

I was floored. I had found the secret to Irene’s sadness and bad behavior: she felt powerless without money in her pocket! If she had money, and quite a bit of it, she became amenable. I felt like Oliver Sacks discovering the dopamine component in patients with Alzheimer’s.

So the next week, as an experiment, I gave her $40, just for walking-around money, to see what would happen with her behavior. She invited one of her companions to go out to lunch, her treat.

When the bill came, she handed it to the companion.

“I thought you were buying today,” said the companion.

“No! No!” she yelled, and bit her knuckle. “It’s my money! I have to have my money!”

Fortunately, the companion had money that day, and rather than cause more of a scene, she paid.

It has been that way ever since, no matter how much she has in her wallet. She wants to feel powerful and treat you, but in the end, she refuses to pay.

Actually, I know several men and women just like that, don’t you?

But I really miss the woman I met that day at Red Rock. She has never returned, and I don’t know where she went or how to bring her back.

Most of the time Irene’s money would go to baby dolls and doll clothing. When she quit the Sutherland job because it was a forty-five-minute drive from her home and the bus route was too confusing for her, her income went down considerably, but her desires and spending habits didn’t. I had all the expenses I could handle, so her walking-around money had to go way down.

To: Walt at the Eighth Avenue Market

 

From: Terrell Dougan, sister of your friend Irene

 

I am so very sorry, Walt, to hear of Irene’s visit to you yesterday. I had no idea she was headed your way; she told us she was going to the public library. When I heard that she filled a small grocery cart to the top with candy bars and then tried to buy it from you with two dollars, you must have been furious. I am sorry you had to put all the candy back yourself. Irene cannot read or write and needs to be told, if she comes in again, that she can buy chewing gum, diet Coke, or coloring books, but no candy. I am so sorry, again, to place you in this position. We are trying to give Irene the least restrictive life she can lead, but she’s obviously playing us for complete suckers. We’ll get a better handle on this community living soon. You were a saint to be so kind to her.
You must have talked to her and understood about her limitations.

Thank you, and your employees, for your many kindnesses to Irene.

Her sister, Terrell

 

 

What Is Normal?

In the field of mental disabilities, the word “normalization” creeps into the vocabulary fairly often. It means two things: one, you try to have the person with the disability act as normally as possible; and two, you try to get the community used to having this person around. This is called normalizing the community. It means making sure those citizens with special needs have the chance and the right to be out and about in the community, instead of segregated and protected in a place far away. Eventually, the theory goes, our “normal” citizens will realize that these citizens do and will live among us and they’d better get used to it.

Here’s an example of normalizing: My friend Carolyn’s daughter Annette, a young woman with Down syndrome, was in front of me in the grocery store. I had watched her grow up and now she was in a group home. She and the other women from the group home were out getting their groceries, all together. They were very slow at putting each item from the cart onto the conveyor belt. People in the line behind us were getting impatient and whispering to each other. The group home staff member stepped out of line and looked back at them and said, “This is your tax dollars at work, folks!” And he gave them a beaming smile.

People laughed and smiled back. The tension was over. He
had normalized the community in a small way, in just a moment. We in the volunteer force and we siblings have laughed about normalizing the country club, normalizing the legislature, you name it.

And when you really look at behaviors, I mean maybe those of your friends, don’t you have to ask yourself what the hell “normal” is?

Professionals tell us it is not normal for Irene to stuff herself with candy. One of my best, high-IQ friends stuffs herself with candy daily.

Oh, but it’s not normal to carry those dolls around! Yet one of the most intelligent women I know has a magnificent doll collection, and is often seen carrying her dolls. She has many more dolls than Irene does. The only difference is, this woman does not ask you to
talk
to her dolls.

So we’re constantly thinking how to get Irene to appear “normal” in as many ways as possible. The rule on dolls is that of course she can collect them, but not take them with her and make people talk to them.

Fashion: Let’s Be Appropriate

In addition to working on behaviors, we work on appearance.

I have a theory that some special-needs people actually like having special needs. It gets them a lot more care, kindness, and attention than they would otherwise get. Irene is walking proof. She loves Mickey Mouse knee socks, worn with shorts, no matter what the weather. The moment my back was turned, all through our times together, Irene would get into this outfit.

Years ago, a study was done on this very topic. The people running the study offered to dress a group of special-needs young adults in the latest fashions. They offered wigs. They offered makeup. They even offered glasses with clear glass in them, just to make these kids look smarter. Then they took their pictures, placed the pictures in an album along with pictures of regular people, and asked a large sampling of folks to identify the special-needs kids. Well, no one could, really. This then proved their point—that appearance really helps in the self-esteem department! Another master’s thesis was finished. The special-needs subjects thanked them, cheered for them, and sent them on their way.

But here’s the rub: the minute the people departed, all these subjects who had been fussed with and dressed differently went right back to their high dutch boy bangs and little stylistic touches, like huge rings of keys on their belts and fuzzy animal purses. They liked themselves that way. So much for helping them out. They knew who they were. Once again, we’re the ones who have the problem.

It’s certainly ongoing in our lives. When Irene and I attended a funeral just last week, she showed up in her driveway in a summer dress (it was thirty degrees outside) and her socks were nylons that came up midcalf. I said, “Oh, no. Oh no, no, no,” and got out of the car to make her change her socks.

Marriott and Paul were with me. “Mom,” said Mare, “it’s okay! Let it go! We’re going to be late anyway, and Irene looks fine.”

“Fine? You think she looks fine? She can’t go like this.”

Irene, used to my fashion fits, climbed into the car and waited to see what would happen next. I ran into her house, searched through her sock drawers for something other than Mickey
Mouse socks, and came up empty-handed. I grabbed a warm coat and raced out.

“Mom!” Mare said. “It’s fine. Let it go.”

So we went to the funeral, Irene happy and me fuming. The fact that no one noticed was not the point. The point was that Mother was haunting me with every fiber of her being. “You make sure Irene looks presentable. Every day!”

I invited Irene to a Valentine’s Day ladies’ luncheon recently. As people began to arrive, I got a phone call from Kay, her chief companion. “I’ve tried everything to get her into the black velvet pants and top with the red heart necklace. She will have none of it. We fought for two hours. She is in Levis and an old red sweater with a hood. I’m sorry, I’ve done everything I could.”

When she arrived, I took her aside and said, “I have half a mind to send you home until you can come back in a nice party outfit! Why do you keep doing this to me?”

She said, “You have a Valentine present for me?”

I was close to sending her back home when another guest arrived. To my amazement, the guest was also wearing very baggy jeans.

Irene and I welcomed her and led her into my house. When the guest’s back was turned, Irene caught my eye and put both her hands over her mouth, stifling laughter, her eyes twinkling.

“Oh, Irene,” I said, “I’m sorry. See how wrong I am. You should wear what you like. Will you forgive me?”

“I’give ya. I can have that Valentine present now?”

“Sure. Honey, what’s wrong with me, do you think?”

She put her arm around me. “Your brain isn’t awake yet.”

I thought of the magnet Irene has on her refrigerator:

NORMAL PEOPLE WORRY ME.