That Went Well: Adventures in Caring for My Sister (13 page)

A callback! That must mean I’m in the running for Lola!

“They want you to come back at four today, to try out for the part of Doris.”

“Doris? Who the hell is Doris?”

“She’s Sister’s friend! You know, the dowdy old neighbor lady in curlers?”

I could not have been more deflated. But I went home and
thought about my place in this world. I guess we have no idea how we appear to other people. I didn’t cry, I just went upstairs and changed into a frowsy housedress and orthopedic shoes, put pincurls and a bandana on my head, found a big bag to hit men with, and went back and nailed the part.

I came to love old Doris, especially as I watched the gorgeous dancer they brought in from New York to play Lola. I could never have sung or danced her part, no matter how hard I worked. I finally, cleverly, noticed that when you cannot remember more than two steps in a row, it’s a pretty good bet you could not be a Broadway dancer. And it dawned on me at last that singing requires a strong voice that you use over and over, every night. What a revelation!

Never mind. I had the time of my life. The role of the older Joe Hardy was played by Robert Peterson, the baritone who sang “The Impossible Dream” at the Don Quixote Luncheon. For the curtain call each night, we in the cast held hands and sang, “You Gotta Have Heart,” and Robert would squeeze my hand every time, letting me know he loved singing at the luncheons where we awarded people for their kindnesses to mentally handicapped kids. It was six weeks of heaven.

On closing night, Mom gave me an ivory heart on a green silk braided chain. With it was a small gold medal, imprinted with the words, “To Terrell, who has more heart than Lola and Doris put together.” I think Mom knew how badly I wished to be Lola, and how very Doris I really was, curlers, sensible shoes, and all, and she loved me anyway.

I had even more to say to Michelle, the supervised apartment coordinator who told me to get a life. I wanted to say, Listen, sweet lamb. Before you were born, we women witnessed a lot of
change happening around us. First, we were told to get married and have children and stay home and be good moms, and then the feminists came along and said no, no, that isn’t really it. You are only one divorce away from poverty, so prepare yourself, get your briefcase, and get out there and have a career. We who loved making raspberry jam and baking cookies with the children felt pretty stupid, watching the younger set move on out and up.

At the time, I interviewed the glamorous feminist Gloria Steinem, and I told her that as a stay-at-home mom, I was a little confused about what was the best life to lead. She laughed and said, “We switched pictures on you in the magazines, didn’t we?” I told her yes, and the thing that offended me most was the declaration that it was a waste of time and talent making jam, because it was better in the supermarkets. That’s what Betty Freidan said in her book
The Feminine Mystique,
and boy, did
that
take the wind out of our sails, we jam makers, we homemakers. And then, Michelle, get this: just a few years later, Betty Freidan retired and said her very favorite new activity was (wait for it): making jam! Yes! And her best recipe was raspberry! I wanted to poke her with a stick.

So see, Michelle, there’s no right answer for me, or for you, either. I promise you that I have a life. And during that life, I have seen sadness, boredom, and frustration in young stay-at-home mothers, but I have to tell you, I haven’t seen such joyous looks on the faces of earnest young women carrying those briefcases and wearing pin-striped suits, either. In fact, they look just as tired as full-time homemakers. So what the hell, Michelle? We all have a life, we try to get the best life we can, we live many lives in our lifetime. And we’re just trying to take care of ourselves, and each other, as well and as lovingly as we can.

W
eight gain occurs a lot in the mentally disabled population as it grows older, and the problem is a real health issue. Diabetes is always right on the horizon. Irene had gained seventy pounds in two years.

So when we brought her to family dinners, each family member in turn would subtly bring up all the joys of being a bit more in shape. “Boy, Irene, it looks to me like you’re on the road to getting thinner. Is that right?”

“I am?”

“Yes! Imagine how gorgeous you’ll be when you’re thin!”

“And what happens then?”

“Well, Irene, um, let’s see. I know! You can wear a bikini!”

“And…what happens when I wear a bikini?

“All the boys will whistle at you!”

“And what happens when they whistle at me?”

“Maybe you can go on a date!”

“And what happens when I go on a date?”

“Um…well, you go out and have fun and have dinner and go the movies!”

“Like I do now? I could have nachos and cheese at the movie? Like I do now?”

“Um, sure.” By now the family member’s eyes have glazed over, realizing she is so far ahead of us all on the subject that we have no arguments left. She would wait for a few seconds and then ask, “What’s for dessert?”

Besides, she was refusing to go to work at the sheltered workshop. Her staff was going through hell, begging her, bribing her, but she had dug her heels in. She wanted to stay home and snack all day and watch TV.

My uncle Bob had been calling and nagging me about Irene and the quality of her life. I knew he loved her, but he was like so many of my friends who just didn’t have the tools to cope with her. Now and then he’d invite her to lunch and give her a dollar or two, but mostly their relationship was long distance and through me.

He kept quizzing me, like some armchair quarterback, adding to my sense of total responsibility.

“Why is she so far away out there in West Valley City in that apartment?”

“Because that’s where the program is, Bob. It’s really close to her sheltered workshop.”

“Why did she have that cut on her forehead last week when she came here to lunch?”

“She had a dust-up with the girl who lives upstairs. They have really hated each other for years.”

“Well, move her!”

“Bob, I can’t just move her! She’s in a system!”

“Why?”

I wanted to scream. I told Bob I had to go, hung up, and yelled to the gods, “Help! I need some direction here!”

Sometimes you have to yell at them. And then wait.

Irene’s social worker, Susan, called me and said, “Guess what. It turns out other parents and siblings are frustrated with their kids’ programs too, and now there’s a new option for you, where you get to do the hiring and firing of staff if you can find a home for the special-needs person. Want to find her her own place and run her program? It’s called SAM, the self-administered model. People in the government are crazy about it because it puts a lot of the work about hiring and firing on you, not them. I guess they’re tired of trying to find caretakers for these kids. Do you blame them?”

No. I could not blame them.

The idea of being able to choose Irene’s companions sounded good to me.

“Do you think I could?”

“What are you talking about? You helped
design
the whole group home program.”

“Yes, but, listen: maybe my judgment is way off. Do you think I’m a codependent person?” Susan had listened to my complaints about Irene’s program for two years.

“Hell, yes. So am I. So what? It’s our karma to make things better. You have Irene, I have forty other Irenes I work with all day, every day. Terrell, go for it! Find a place and get Irene’s program the way you want it. Please yourself. The state can pay a good portion of the staffing money. It saves the state money because you would provide the home. The fiscal agent takes care of
all the withholding taxes, so you’re not going to be drowned in paperwork. Just consider switching to this model.”

I told her to send me the application papers.

Then I thought, what the hell have I done? Should I rent a home? How long could the trust afford that?

Uncle Bob Shows His True Colors

Uncle Bob, Mom’s little brother, scared Bammy every day of his life with his dangerous antics with go-carts and pranks on the trolley tracks with his buddies. Bammy was just grateful he had never been seriously hurt. He was tall, handsome, and very attractive to women. Irene and I were his only living relatives. He had watched from the sidelines as our family went through the process of rearing Irene, and now he was badgering me about her.

But very soon after I decided to make my own way with Irene’s living arrangements, Uncle Bob called me up and invited me to lunch. He was now eighty-six, his thick hair was now white, and the ladies at his assisted-living facility were stopping by the table to invite him for cocktails.

After lunch, he sat back. I was waiting for another quiz on how I might improve Irene’s life. Instead he said, “Why don’t we buy Irene a house?”

“Bob, I don’t think Mom and Dad left enough money for all that. Well, I could buy a small house, but then the cost of maintenance would run the trust out in a few years.”

“But I would buy the house.”

“Good Lord, Bob, with what?”

“Turns out I’ve made a few bucks with that money Bam left me. I got really interested in investing it, and I think I have enough to buy her a little house, maybe a duplex. Why don’t we look in the Avenues so she’d be close to you?”

“Bobby. I am stunned.”

“Well, hell, Tiger, I can’t take it with me. Why not? I think this is just what she needs. Face it: she doesn’t want to be with kids like her. She hits them. Why not do her and them a favor? Let’s go for it.” With that, he picked up his phone and called his favorite realtor.

When I told the people at the supervised apartment project, they were really upset. “Well,” said one manager, a really fine person who runs a good program, “I’ll tell you who’s losing out here. It’s Irene. She will be protected and babied and waited on, the way you want her to be. It doesn’t serve her well.”

This went straight to my neurotic little heart, and I spent many more sleepless nights, fighting with myself, tossing and turning, over what was best for Irene. Finally Paul sat up and bed and said, “Listen. It’s time you get to please yourself in this area. I’m interested in your getting some sleep, you know? This will in turn let me get
my
sleep, and we can go forward with our lives. Terrell, put a program together that works for you as well as Irene. What does a good program look like to you?”

As I began to talk, the talk turned into a whine and then a sob. “I want her clean and busy and happy and
healthy
—she’s almost a hundred pounds overweight because of the candy machine—and participating in the life of the community in a way that suits
her,
not me, and not her staff.”

“Well, now, that shouldn’t be too hard to achieve, do you think? You hire good staff, you pay them well, so well they don’t
leave. You give them a set of operating instructions. You know what she likes, you know what triggers her tantrums. You tell them. Then you hire a cleaning woman. You get a good psychiatric professional who knows the latest in medications to help even Irene out. For God’s sake, Terrell. Just please
yourself.
Be in charge. Don’t try to please anyone else. Don’t even try to please Irene for right now. Find the house, follow your instincts. Just get out there and do it. You have some of the resources, and the state has given you the power with their new program. Stop taking this out of your own hide. Go to sleep now, and in the morning get on with it.”

“Easy for you to say. You’re not living this.”

“Oh yeah? It’s two in the morning. Believe me, baby, I’m living this.”

We found a charming little house in the Avenues, a duplex on two floors, very near the J Street home where Irene and I had grown up, the street I’ve always felt held magic because we had so much fun there in the 1950s. Some of our old neighbors were still living in their homes. When I went to see them, they were delighted to see us both again. We speculated about getting a game of kick the can going on a summer evening, even though our hair was graying.

Irene’s duplex had a garden that needed a lot of work, but that made it kind of fun, I thought. I loved the idea of her having her own private home. I would run my own version of the least restrictive alternative. She could be out and about in her neighborhood! Her neighbors would come to love her, I just knew it.

First, her health program. Having gained so much weight in the supervised-apartment program, Irene had developed diabetes and high blood pressure. In order to bring her blood pressure
down, she had to walk a lot. Remembering Glenn Latham’s great teaching about behavior modification, I thought of what motivated Irene, and the answer was right under my nose: going to visit her heroes, the firemen, and getting money.

The fire station was only six blocks from Irene’s house. I went to see the firemen and explained my goals for Irene. I asked them, if I gave them an envelope full of one-dollar bills, would they give Irene a high five and hand her a dollar every time she came to visit? They could send her home again with her dollar, and I didn’t think she’d bother them too much. They said they’d be happy to help.

Then I went to LDS Hospital, where they have a gift shop. I asked the ladies who worked there if they would consider a lay-away program for trinkets Irene wanted. I explained about her program of visiting the firemen and receiving a dollar and a high five from them. Could she walk to the hospital, only three blocks from her house, and put some money down on some item she wanted to buy, and when she had paid in full, take her treasure home? The gift shop ladies agreed.

Some nurses nearby overheard me. “Wait a minute,” they said, “You mean you’re giving your sister a dollar to go walk over to those adorable firemen? Could
we
get on that program?”

Next: hiring the companion.

One of her helpers at her old program, Janie, a beautiful young woman, asked me to hire her as Irene’s companion. After all, she knew her well and was already trained to work with Irene. Besides, Irene loved her. She was willing to follow my new rules for a clean house and dry laundry. Besides, she needed a place to live while she figured out her future. “But Janie,” I said, “you are
drop-dead gorgeous. You’ll be dating or getting married before we know it.”

“I have no boyfriend,” she replied. “None.”

Well, it was perfect. Everything was going to be all right.

WHAT HAPPENED NEXT
was that Janie announced she was pregnant. She had been having a fight with her boyfriend when she applied for the job with Irene. Now she was going to marry him and have the baby, but could they stay anyway? They needed a place to live.

I asked Irene about it, and she said that would be a good thing because she loved babies. Irene, dressed to the nines, was in Janie’s wedding as the guest book lady.

Meanwhile, Irene longed for a hot tub in her backyard. Once again, Uncle Bob came to the rescue. “Why not?” he asked. “Life is short. Get a hot tub.”

So we built one, and that’s when we got to know Irene’s neighbors, the Hansons. The Hansons have a perfect view right down into Irene’s backyard. They had been very accepting and welcoming when we first moved Irene in, and I explained about Irene and the living arrangement. They were especially pleased with the beautiful garden we put in. All seemed to be going well. Then one day Mary Hanson came to see me as I was getting into the car in Irene’s driveway.

“We are very concerned about Irene and that hot tub,” she said.

“Why is that?”

“She gets in there with her doll. Then if she sees Bill or me, she calls to us and starts a conversation. Sometimes she is talking
about her doll being a naughty girl and then she holds the doll under the water for a long time. Do you think she’d do that to Janie’s baby?”

I laughed aloud. They had no idea about Irene. But on the way home, I began to fret that maybe this was what Irene was thinking, as she could be very jealous of the baby as Janie took care of it.

Paul found me tossing and turning in the night again. “Now what?” he said.

“Oh, nothing. Just program problems.”

“It never ends, does it?”

“Nope. But I’m happier having her closer.” I reminded myself to tell Janie of the Hansons’ concern and warn her.

When I did tell Janie, she laughed too. “Never gonna happen,” she said. “Irene would never in the world do that, nor would I ever have my baby in a hot tub. Relax!’

On the one hand, I fretted about neighbors complaining about every little thing. On the other hand, I was grateful that they would keep an extra eye out for me.

Over the years, the Hansons have been Irene’s best friends and great neighbors. Once Irene had to have oral surgery and I brought her home very sedated because she had been put under anesthesia. It was all I could do to get her in the house. Mary, seeing us out her window, came running and put one of Irene’s arms over her shoulder to help me. “Let me help you get Irene to bed. I love this lady.”

When Janie’s baby Molly was born, Irene carried her around, helped feed her, and reveled in the whole scene of surrogate motherhood. I peeked in the kitchen window once and found Irene feeding the baby in her high chair, talking to the baby as if she were her doll. Janie and her little family lived with Irene for
almost three years, until the next baby was due and we all simply ran out of room.

We then found Kay, Irene’s head staff member and house manager, and three other wonderful young women, to make up Irene’s staff. All was progressing nicely. Kay, who had worked in other group home programs, knew how important Irene’s independence was to her. She bought Irene a bus pass to use on her way to work at an incense factory and back. Irene was easily trained to make a bus transfer and get to her job, where her job coach was waiting. She loved the bus pass that hung around her neck.