That Went Well: Adventures in Caring for My Sister (8 page)

Dear Mr. and Mrs. Harris:

 

We are sorry to report that we must send Irene home from Devereux. Our staff has done all it can to prevent her tantrums and hitting her roommate, but we have finally come to the conclusion that it is in the best interests of our other clients to terminate Irene’s stay with us. We have done our very best over these six years, but we see now that perhaps others in your community may be better equipped to handle her. We have tried medications, but they have not been effective in controlling her outbursts. We will terminate her stay with us one month from now, and hope you will be able to make further arrangements on your end.

Sincerely,
The Devereux School Staff
Goleta, California

 

 

I’
ve had to paraphrase here, because we lost that letter a long time ago. But that was the gist of it. The Devereux schools are
a godsend to many families. They have fine facilities and caring staff. I have wished many times that Irene had been happy there. My life would have been very different if she had.

A month later, when Mom and Dad picked up Irene and all her suitcases to drive her home, she was beaming with delight. Back at home, Bammy was wringing her hands and wondering how much strength she had left to care for Irene daily.

But,
TA-DA!
Good news, Bammy—we now have a group home program! Thanks to short-sheeting Evan Jones’s bed, and possibly other enticements such as funding from the legislature, his Office of Family Services contracted with Project TURN to provide group-home placements. Irene was eligible to enter that program, I told Bam. I know we can find a place for Irene there. I worked hard on that project! They’ll surely make a place for her.

And they did.

And it lasted three whole months.

Irene wanted to come home, and she knew exactly how to get there.

She threw a couch through a plateglass window. Well, it was a love seat, and she didn’t actually throw it: she pushed it so hard that it broke the window.

The staff, being well trained in behavior modification, ignored it.

It’s really hard to ignore a couch slamming through a plateglass window.

But they turned their backs on her, because you’re supposed to ignore inappropriate behavior and reward appropriate behavior. Turning your back on a broken bay window with a couch sticking through it demonstrated their earnest attempts at coping with Irene.

Noticing that she hadn’t received their complete attention, Irene then sat down on the floor and took off her shoes and socks and bit her big toe so hard that blood spurted out.

This they could not ignore.

They called me up and explained sorrowfully they had failed with her, and for the sake of the other residents, they had to expel her.

Irene had won again. She was back on my parents’ doorstep, absolutely thrilled. For Irene, the best news of all, besides moving home again, was that Mom and Dad had built a small swimming pool, so that Mom could walk in it to ease her arthritic joints. When they finally filled the brand-new pool with water on the first warm day in spring, Irene climbed into her bathing suit.

My two daughters were there with Mom, and all three of them said, “Irene, you can’t get in yet! We have to wait two more days until it gets heated up enough!”

“I want to go in now! Now!” she pleaded, heading for the pool.

“Irene,” Mom said, “honey, it’s freezing. You have to wait.”

“No! No! It’s not cold for me!” Irene started hitting herself, biting her knuckle, her whole routine.

Mom had simply had it. “Okay, sweetie. Fine. See for yourself.”

Irene ran to the pool and jumped in. When her head came up, she was gasping for breath. The girls ran to get a towel, and Irene climbed right out. As they tried to warm and console her, she snapped, “Don’t breathe on me!”

Now when my girls are freezing cold, they say to each other, “Don’t breathe on me!”

Mother loved being able to watch over Irene again, Dad was making triple manhattans, and Bammy? Well, Bammy had her own ways of living life.

Bammy survived by caring for all of us and playing bridge with her friends. Her morning routine consisted of serving Mom breakfast in bed and then pulling on Dad’s galoshes for garden work, this all still in her nightgown. Every summer morning we would see Bam out in the garden, weeding, in her nightgown and Dad’s galoshes. In winter, she pulled on the galoshes so that she could go out and wash the family car in the garage. Our washer and dryer were out in the garage, too. She could clean house, weed the garden, wash the car, and then put a load of laundry in before she ran down the hall to her bath to get ready for her bridge lunch. Knowing Dad was at work, she would often just pop her nightgown in the wash and run naked down the hall to the bathroom.

One icy winter day, Mom was driving Irene to her workshop. In the garage, Bam put her nightgown in the wash, which was already in progress. Then, naked except for Dad’s galoshes, she went to go in the door to the house. Somehow the door had locked itself from the inside. Bam was trapped in the garage. Her nightgown was irretrievable. She had no choice but to push the button to open the garage door, race around to the front door, find the key in the flower pot, and let herself back in. Except that just as she reached the front door, she heard the mailman whistling up the sidewalk, behind the scrub oak branches. She raced around to the side of the house and crouched down, shivering. When he finally left, she padded through the snow to the front door and let herself in, only slightly the worse for the wear.

When Irene came home from Columbus that day, saying she’d had to spend a lot of time in the time-out room for hitting
a coworker, Bammy told her, “You don’t even know what a bad day is.”

But of course Irene did know, and every day of the eighteen years she spent at Columbus Community Center, with dozens of others like her, was hell for her in many ways. Her constant need for individual attention drove her to tantrums and violence against the others. Like many people with developmental disabilities, she wants to be the only one in the room with the problem. So she did spend a lot of time alone in the time-out room. And in those years, the drugs available for this sort of behavior were just not known or available.

It was during this time that Mom appeared one morning at my house. I offered her coffee and kept on doing the breakfast dishes, because I was due at a meeting soon. Mom put her head in her hands and started to sob. I went over to her and put my arms around her. “What is it, Mom?”

“I’m so discouraged, I don’t know what to do. Irene doesn’t fit in anywhere, and I can’t cope with her anymore. I don’t want to leave her to you to have to deal with. I’m thinking the best solution is to just kill her somehow, and then kill myself.”

I hugged her some more and then went back to my dishes. “Mom, I don’t think that’s a good solution. Really.”

“Well, I don’t see any way out.” She put her head in her arms on the table and sobbed some more. The more she dramatized her sadness, the more quiet and numb I became.

I wiped the counters and said, “Hang on for a while. Things change. Something will come up. A door will open.”

She seemed to want me to join her in her tears, but I couldn’t. I think I had developed a core of stoicism over the years, maybe
because Mom seemed to cry a lot. Maybe I was always thinking hard how to fix it. But I didn’t cry or rage, at least on the outside.

“Mom, I’m really sorry. I have to go to a meeting.” She stood up, hugged me, and said she was sorry, too.

As I drove to the meeting, I felt really sad, first for Mom and then for myself. I simply couldn’t think of how to help her with her despair.

Mom did not kill herself, or Irene. Irene’s days were spent at Columbus Community Center, but she was at home with Mom, Dad, and Bammy every other minute and on weekends, needing constant supervision and expecting constant attention. They were getting too old for this.

During this time, Paul and I would bring our two daughters to Mom, Dad, and Bam’s new house high above the Capitol in Salt Lake for dinner. Irene, always delighted to see her nieces, would come out holding one of her dolls. Even at age two and four, my children could see that Irene was not like normal adults. When they asked to see her doll, she would start to hit herself and yell, “No! It’s mine!”

It seemed a little odd to them for a grown woman to be acting like this. I remember that one of the first times it happened, I was able to get them alone in another room for a minute. Their sweet, intelligent little faces were looking at me for guidance, ready for an explanation. “When Irene was born, she had something go wrong in her brain. It got hurt, and it can’t be fixed. She can’t read and write, the way you are going to as you grow up. She needs us to take care of her and help her all we can.”

They nodded, accepting my explanation. They sometimes took her hand and led her into their bedrooms to see their own dolls or other toys. She loved seeing their playthings, and never
tried to take them. She just couldn’t bring herself to share her own toys. But when it was time for a daughter’s birthday party, I was always in a bind. Should I include Irene, who loved the parties and the balloons, and our local baker Mrs. Backer’s famous birthday cakes? Or could I take a pass and just concentrate on my children and their friends? In those two or three years when Irene was living back at home, I felt I had to invite her, especially since my mom was always an integral part of the parties. My mother loved parties, she helped me with the decorations, and my children adored her. They called her Rosie, and she added to their parties with little touches that made them memorable. Since Katy was born on Halloween, Mom became a masked fortune-teller, reading palms by candlelight. The children delighted in her act and looked forward to it.

But when Irene came, it was a bit of an embarrassment to the little girls. They tried their best, but it’s hard, when you’re turning four or five or six, to be compassionate and grown-up and introduce your strange aunt to your friends. (I once heard one of them telling a friend, “My aunt has a broken brain. But she is nice, too, and we love her.”)

Irene, of course, wanted to open the presents. We stopped her, but then she wanted to fish in the fish pond for the favors. I’d be standing behind the sheet, hooking the tiny gifts on the fishing string, praying that the little person on the other end of the fishing pole was not a really big person who pushed to the front of the line.

Looking back on it, I think it marvelous that my daughters put up with all this over those early years. Wait: they had no choice. They had to accept the fact that, yes, this is our aunt. Get over it.

I think these situations helped make them what they are today: competent, contributing citizens of their community with an extra dose of compassion. They have taught their own daughters to treat Irene the same loving way they do.

Meanwhile, back at the homestead, Irene was still attending Columbus during the day, spending a lot of time in the time-out room, and living with Mom, Dad, and Bam. But all of a sudden, everyone but me seemed to fall apart all at once. Bammy developed throat cancer; Dad, a smoker since he was eighteen, was diagnosed with emphysema; and Mom got cancer of the bile duct. Once again they had nowhere to turn for help with (and for) Irene.

With a pounding heart, I offered to create a private program for her. I’d find her a live-in companion and an apartment, and she could still take the bus every day to her sheltered workshop. After all, I had helped put other community programs in place. Why couldn’t I do a private one for Irene? By this time my parents were so worn down that they agreed. Dad put some of his savings in a trust for her and made me the trustee. “We didn’t mean to put this on your shoulders,” Dad said.

“God knows I didn’t mean to put it on my shoulders either,” I told him. “But when you think about it, Dad, we’ve been training me for this all my life.” At least I knew the system and had friends in high and low places who could give me advice.

I felt so noble, standing there, looking at him across the room. He was wearing his oxygen tube and looking at me, his face solemn and concerned. I thought it was because he was in awe of my sacrifice, to help with the Irene situation.

Then he pointed to my feet.

I was standing on his oxygen tube.

I jumped off, and Dad sort of crumbled to a chair and appeared to faint. I ran to him, but he opened his eyes and laughed. “Want to hear the best thing that happened this morning?” he said, sitting up.

“I got a phone call. The fellow said, ‘We are raising money to help the disabled.’ And I said, ‘Oh, thank heavens you’ve called. I need about five thousand dollars as soon as you can send it.’ There was this long pause, and then he hung up.” He slapped the couch, laughing.

We advertised in the classifieds for a companion for Irene, and started looking for an apartment for her. Dad, the pro of all pros, wrote the ad. We sought a companion for a mildly retarded young lady who was physically independent. He did not mention that she threw couches through plateglass windows or that her screams could shatter glass. After all, this could be a little surprise to be discovered later, right?

We rented a nice two-bedroom apartment in a complex close to the bus line, and then we waited and prayed. And out of many applicants we found a young woman who was a psychology major at the university. Debbie handled Irene beautifully, and we knew we were home free.

One of our friends who was a lawyer, and who knew Irene well, helped me draw up a contract for Debbie. “Now, how much will you be paying her?” he asked.

“Five hundred,” I said.

“Five hundred?” he asked. He’d spent time with Irene at our house. He was not one of the most patient people in the world. “Yes, but how often?” He suggested that five hundred daily or even hourly might get the job done, if we were lucky.

While we made plans for Irene’s future, the Fourth of July
came around, and we thought Irene should come with us to the church picnic just up the hill from our house. Children rolled on the grassy slope, fried chicken and hot dogs sizzled on the grill, a long table of great potato salads and ten different flavors of homemade ice cream beckoned. In the corner of the lawn stood a little stage where the bishop could give a talk, praising the birth of our country and all it stands for. Paul and I got busy talking with old friends. The children began to play with their new friends. Teenagers had been assigned to look out for the little ones, so Marriott even had a supervisor with a puppet on her hand.