That Went Well: Adventures in Caring for My Sister (10 page)

Right after Dad’s funeral, our traveling fitness group was planning to go to Hawaii. I was the exercise instructor for this group, and we had been taking vacations together for a number of years. In the depths of winter we would go to Mexico or Hawaii and dance on the beach for a week. We called ourselves the Silver Door. Twenty women usually went, and this trip was no exception. I felt I couldn’t leave Mom and Irene in their grief, so I invited them to join us. The ladies of the group all knew them both, loved Mom, and didn’t seem to mind that I brought Irene. So off we went to the island of Maui.

Irene loved wading on the beach. I thought it would help heal her grief about losing Dad. But I wasn’t prepared for an incident that happened midweek.

Mom said she was going to go look around the clothing shops in the hotel. Now, another of Irene’s behavior triggers is that she wants all shopping to be done for her exclusively. So she responded to Mom’s plan by screaming. Here was a shopping trip, and she wasn’t going to get any loot. She screamed so loudly that finally we heard a knock on our door. It was the hotel manager. “What is happening?” he asked.

Irene continued to scream and hit herself in the face.

The manager watched this drama and said, “I had complaints from other guests. They were afraid someone was being murdered.”

He could see Irene was doing the whole show herself. “I can’t allow this in the hotel,” he said.

“I understand,” I said. “It will stop very soon now.” We were one scream away from being shown the door.

In a few minutes, Irene exhausted herself. Mom and I held our breath the rest of the week, being grateful that any outbursts Irene had were on the beach and not in the hotel. We hit rock bottom when she started pummeling me on the plane home. That did it. I feared for her companion Dana. So two weeks later, I put Irene in the Western Institute for Neuropsychiatry for a two-week evaluation. She was in a locked unit, under observation. This was in the days before the new miracle drugs had come out, so the diagnosis came back that drugs would not help her, that she was just spoiled, that we should fire Dana, the saint, because she let Irene get away with too much, and that Irene should enter a group home that specialized in behavior modification. That would shape her up.

I told them I was fairly well acquainted with such group homes, and that Irene had been expelled from that system years ago. Her social worker pointed out that much had happened since she was last their client, and they were now ready for her. She should enter one of the new group homes that had been established by one of the many residential programs now sprouting up all over the state. Could Irene’s behavior change that much? If I didn’t move her into a group home, would she finally start punching Dana? I couldn’t allow that.

Her current living situation with Dana was the only program that hadn’t evicted Irene, because I was in charge of it. Why should I put her back in with the “professionals” who said they could change her behavior? Was it doing her a service to leave her with Dana? How best to serve poor Dana, too?

So a few days later, I thought I’d just ask Irene herself about this. I keep forgetting that she cannot conceptualize an idea. We were sitting by the duck pond at Liberty Park, eating sand
wiches, and Irene was gazing out over the water. “Irene,” I said, “honey, I can help you get what you want, but you have to tell me. Listen to me first. Mom is too weak to have you living at home with her. Paul and I will be happy to have you stay with us now and then, but not to live with us every day. Anyway, you’d be bored living our life. You need to live your own life. You have to tell me. What is it that you really want?”

She gazed out at the pond, and I imagined her forming the words that would tell me her soul’s secrets. Then she looked at me thoughtfully, and said, “I want—a hot dog.”

S
o if you’re up for ghost stories, I have to tell you this. Right after we got back from Hawaii, while Irene was being evaluated over at the institute, Paul and I were having our dinner in front of the television in our library. Shelves of books line the walls of this room. All of a sudden, a book made its way out of the bookshelf right above my head and fell on me. It really hurt. I rubbed my head and held the book. Paul had watched the whole thing, and all he could say was, “Jesus H. Christ!” How could one book make its way out of the shelf?

I looked at the book. It was a compilation of plays. The first one listed was
Berkeley Square
by John Balderston, about an American who goes to London and switches places with his ancestors of two centuries past. It was Dad’s favorite play. I think he was trying to keep his promise to contact me if he possibly could. And time travel was his favorite subject. I would like to say here, for the record, in case certain ghosts are reading this, that it was a pretty clumsy gesture and the lump on the top of my head took
two days to go down. Either Dad was telling me that he’d made contact, that time travel is possible, or maybe he was just telling me to go to London and stop trying to fix Irene. But Irene was due to get out of the institute in a few days. So I thanked Dad and put the book on a lower shelf.

Irene’s evaluation, followed by recommendations from the professionals, showed me that I had been running a very strange and, frankly, stupid program. Poor Dana had never had any backups to give her time off. She had never had any training in behavior modification, which is now standard procedure. Irene controlled Dana with every trick she knew, and it wasn’t helping Irene one bit. Her social worker encouraged me to apply to one of the behavior modification group homes. I did as she suggested. It would probably be the best thing for Irene, and that had to be my priority.

Looking back on it, all I really needed to do was get Dana into some good training and hire some backup help for her. It would have been a much smarter move. But, as usual, I listened to the professionals. After all, this is their business. And after all, these group homes all over the state, run by several different service providers, truly are a godsend to most families and to the mentally disabled people who want their own independence. I kept hoping the system would work for Irene as well.

I am very grateful for professional advice, sometimes. I am glad the pros are around when I need them. My problem as Irene’s sister is that I never know if my instincts are right or if I am nuts and the professionals are right. Usually it’s about half and half, but I almost always guess the wrong half, too late.

So this time, I gave Dana her severance pay, turned in the key to the rental home, and enrolled Irene in one of the behavior
modification group homes. I was lucky to get a spot, as they are in very high demand. Dana was very sad, as she simply loved Irene. I was too clueless to realize how important love is in the equation of caretaking.

When I told Irene that this was our new plan, she asked, “And I get to see Dana?”

“Sure. You can have visits together,” I said. “But you’re going to have house parents, who look really nice and fun.”

“I could go out on a date with the guy?” she asked.

“Maybe.”

Irene settled into a basement bedroom in the group home. The good part of it was that she didn’t have a roommate to push around. But I could hardly wait to see what gimmick she’d pull to get out of there and get back home with Mom.

Her first trick was to get their attention by slamming doors. Irene can slam a door so hard it breaks the frame. She is very good at this, and it scares everyone. One time, in another setting, she slammed a door in a fit of temper. The force she used to slam the door cut off the tip of her thumb. It was a colorful night at the emergency room, with her staff carrying the tip of her thumb, in case they could reattach it. They could not.

Now, what the staff at the group home did about this behavior was to make Irene stand there and slam the door thirty-five times. They would not let her stop slamming the door. She got tired. They told her to keep slamming. It completely wore her out.

She never slammed a door again in that home. Mom and I were encouraged. The staff seemed to know their business. And they actually enjoyed Irene.

Their favorite incident happened when she was to take a taxi to our house for dinner one evening. She climbed into the cab
and gave the driver a note with my address written on it. He squinted at it and said to her, “I can’t read this handwriting.”

This sent her into a frantic fit. She began to scream and hit her cheek. The cab driver was so terrified he got out of his cab and ran down the street. The staff, watching out the window, ran out and told him Irene was harmless, but they had to stop laughing first.

It turned out that the housefather, Don, did indeed take Irene on outings, which she considered real dates. The promise of an outing with Don meant perfect behavior for at least a couple of days. “I have a boyfriend,” she giggled. “His name is Don.”

“But what about Joy, his wife?” we’d ask her.

“They’re just good friends.”

The Bus Terminal Blues

It was during this time that we wanted Irene to take the bus from Columbus into town to meet me so that she could come to dinner at Mom’s. I told her I’d meet her at the bus and drive her the rest of the way. When the bus came, she wasn’t on it. When the next bus came, she wasn’t on it. An hour had gone by. I was getting really worried.

I went to a phone booth and called the bus company and told them the problem. “Don’t worry, we’ll find her,” they told me. “Meanwhile, come on over a couple of blocks to the bus terminal. It’s where we sort everything out.”

Arriving at the terminal, I saw lots of people sitting in the waiting room, and a line for the phone booth. The supervisor at the desk welcomed me and told me to describe Irene, and which bus she was expected to be on, and then she got on her phone to
the bus drivers. I was really impressed. She told me to take a seat, and when news of Irene came, she would let me know.

I thought of someone kidnapping her. Then I remembered the O. Henry story, “The Ransom of Red Chief,” about thugs who capture a little boy who is such a holy terror that that family charges the thugs a huge sum to take the kid back.

And I relaxed. I could take that tack if necessary.

The local bus terminal was one block from the Greyhound terminal, so people were coming in from all around the country and then trying to make a local connection here. When I stopped fussing about losing Irene, I began to observe these travelers all around me. I overheard an African American man in the phone booth. He looked poor and hungry. “Hi, Ida,” he said hopefully into the phone. “It’s Tom. Yeah. Well, I was just passing through and thought I’d give you a call, maybe come see you—” Then silence. “Uh-huh. Okay. Sure. I see. Well, maybe another time…” and he hung up. He made three other calls like this, and with each call my perspective became a little sharper about what sadness is. What loneliness is. What total helplessness is. The man hung the phone up after his third call and walked, dejected, out of the terminal. I wanted to go give him money, but I thought it might humiliate him.

Then I saw a woman pick up the phone. “It’s me, Ben. I’m leaving and don’t try to come after me. No, goddamn you, I’ve had it. Oh, shut up. I’m out of here. For good, you bastard!” She slammed the phone back in its cradle, picked up her battered suitcase, and hurried out to board a bus. Other people sat there, staring ahead, with whatever loneliness and alienation they appeared to be feeling. I was one with them, for about a half hour. I had all the resources in the world. I knew everyone in town. Hell,
I could call the governor if I wanted! But no amount of influence or resources could help me now. My sister was lost, and not even the governor could do much about it. We all sat there, staring out the window, wondering how to solve our messy lives.

I was very close to standing up and announcing, “Okay, as soon as I find my sister, you’re all coming home to dinner with me.”

But I restrained myself. They’d think I was nuts. And maybe they had other plans. Soon a bus appeared, its only passenger being my sister. She hopped off the bus absolutely delighted that I was there. “I took the wrong bus!” she announced sheepishly, grinning from ear to ear.

“I sort of figured that out,” I said, hugging her, and we went on our way, Irene thrilled to be rescued and me deeply grateful to have somewhere to go, to someone who loved us, to a warm home.

Irene’s group home situation was not working out, surprise, surprise. Even though her staff told the spooked cab driver that she was completely harmless, that wasn’t precisely accurate. When she slugged her housemates for the fourth time, it came to the staff’s attention that she needed her own space, so they moved her to a semi-independent apartment, where she had the whole place to herself. Staff checked on her before and after her workshop job, and took shifts to be with her on weekends. That, they said, was all the supervision she really needed.

“Really?” I said. “Just a little checking in now and then? She needs no more help than that, huh?”

“That’s right,” said the supervised apartment living director, who maybe needed to fill his quota of clients to make budget for that quarter. “She’ll do just fine here.”

Uh-huh. Oh, yeah.

“T
errell, leave it to the pros. Irene will be fine,” my friends with siblings or children in the group homes told me. “Really, the staff is terrific, and she will be with her peers, so stop fussing! Give it a few months. See how it turns out.”

Meanwhile Mom said, “I want to go on a last trip. I’d like to take you on a cruise in the Mediterranean, and we’ll stop in New York on the way home and see some shows. That’s what I want.” She sighed. “It will be my very last trip to New York.”

So what’s not to like about a cruise in the Mediterranean? I told Mom of course I would go.

On the ship-to-shore excursions, Mom had organized taxis to take us to places she and Dad had loved. One gorgeous autumn afternoon in Venice, we took a water taxi to the dock by the Hotel Danieli and had lunch in its rooftop restaurant overlooking the Grand Canal. As we clinked our wine glasses and saluted each other, I thought to myself, here I am in the most romantic spot on earth—with my mother. It was an unkind thought, especially
since after lunch she limped her way into San Marco Square to take me to a little shop she recalled that sold jewelry made out of Venetian glass crystals. She bought me earrings, a necklace, and a bracelet, and I realized, as we made our way back to the water taxi and the ship, what an ungrateful wretch I was.

But here’s the rub of the trip for me: I was exhausted from caretaking. By now Mom needed a wheelchair in airports and for long walks, and I pushed her, along with all the other caretakers I saw on the cruise ship, all in exactly the same boat (pardon the pun) as I was.

At night, when we had got our charges to bed, we walked the ship, we caretakers. There must have been at least thirty of us: hired help or the grandchildren or spouses of those who were too weak to travel but still wanted to go. I looked at us all, strolling along the deck, and it occurred to me that we paid a fairly heavy price for our good health, in a way. I was so tired that the thought of someone pushing
me
in a wheelchair and bringing me breakfast in bed sounded wonderful. The other caregivers looked equally haggard. We didn’t speak. The quiet of the night felt wonderful. It was our only time to be alone with our own thoughts.

One night our Greek cabin steward whispered to me, “Meet me in the hall, please.” He had been watching me wait on Mom for a week. In the hall, he said, “You need to have more fun on this cruise. When your mother is all settled for the night, tell her the crew has invited you to a party below.”

I did. Mom said, “Have a good time, dear,” and off I went into the bowels of the ship with my cabin steward, where the wine was flowing and the Greek music was playing. I found myself immediately pulled into a circle of Greek dancing, Zorba style. We danced until one in the morning, and my exhaustion fell away
with all the music and camaraderie of the delightful crew, men and women of all ages, just letting loose. As I crawled into bed, I thought to myself, yes, there’s a price for caretaking, but now and then it has its rewards. If that cabin steward had considered me just another privileged passenger, he would never have invited me. I got a pass to the crew party because I was a worker, just like them.

Back in New York, checking into the Marriott, I try my usual con game again. “This is my mother’s very last trip to New York, and I was wondering if we could have a room with a nice view.” The clerk looks at me and then at Mother, “Just one minute, ma’am,” he says, clicking his computer and staring at the screen.

It works.

Mom is thrilled with the view, even though her eyes now make fuzzy stars of each point of light. (“Don’t worry,” she has told me. “It just makes things doubly glamorous.”) As I start to unpack and turn down her bed, she says, “No, not yet. I’ve heard they have a wonderful bar here that rotates around slowly so you can see the whole skyline. Let’s go up and have a nightcap!”

I am exhausted and achy, seeing my life stretch out as perpetual caretaker not only for Irene but also for my mom, who has been dying on my arm for the last five years and is planning on five years more.

“Okay! Let’s do it!” I say brightly, smiling. I hate phony people, yet at times, I am the biggest phony I know.

Half an hour later we are seated at the window of The View with two big manhattans. “Isn’t this lovely! And aren’t we lucky to be able to be here! Let’s be sure to send Irene a postcard.” She lifts her glass for a toast, her hand shaking so badly the drink almost spills. At this point she has cancer, heart disease, ulcers from
radiation treatments, osteoporosis, familial tremor in her hands, and cataracts in her eyes. She considers all these minor inconveniences that must be overcome on the way to the theater—any theater, anytime, anywhere. If someone is standing on a stage doing almost anything, Mom wants to be there, clapping.

When I was in grade school, Mother would come and take me out for an afternoon matinee if a touring company of any Broadway play was in town. “But,” the teacher would say, “school isn’t out until three thirty.”

“Oh, I know,” she’d say, “but this is
the theater.
We have a matinee, and you know they always begin at two.” She was surprised that the teacher didn’t know that going to a play or a musical should take precedence over everything.

One year she had a heart attack and insisted on leaving the hospital three days early because she had tickets to the road company production of
The Unsinkable Molly Brown
.

“Let’s see, now, what’s our matinee tomorrow?” she asks.

“
Guys and Dolls,
” I tell her, waiting now for the familiar recital of how no one could ever do Adelaide like Vivian Blaine did. I get it. I sip my manhattan and listen again, and I know what’s coming next: the failings of theater today compared to theater in
her
day. She watched the curtain rise on Lynn Fontanne in
O Mistress Mine
. “The set dazzled the audience. It was a gorgeous drawing room. Lynn Fontanne sat there on a green velvet love seat. She was dressed in ruby red satin with a flowing skirt, a huge vase of ruby red roses on the table behind her. The audience just gasped and began to applaud, and she had to wait about three minutes until the clapping died down to say her first line.”

She also had the fun of watching Alfred Drake stroll onstage to sing about a bright golden haze on the meadow, the opening
song in
Okalahoma,
which she now proceeds to tell me about again. I am both envious of her having those early Broadway nights and exhausted from hearing about them for the fiftieth time. She brought the record albums home from each trip, and as a child, I would dance and sing to them in the living room.

“Did I tell you about Gertrude Lawrence in
Skylark
?” Now
there
was a play.” Which is now going to segue into seeing Gertie do
The King and I
. Knowing the entire script, I take another swig of my cocktail and wonder how I can beg a cab driver to drive us just one block to lunch at Sardi’s tomorrow.

How can she still be upright? Can passion for the theater translate into sheer will and win over a failing body? I listen and drink until the lights of Manhattan look fuzzy to me, too. I wonder if I will do this to my girls: tell them my memories over and over. Will they have to almost carry me to the theater? I think of an old Spanish proverb: Ill women never die. Is this my genetic heritage?

“Well, that was perfect,” she says, having finished her monologue on People Who Could Not Sing But Did The Part Anyway, like Gertrude Lawrence, and then her dearest love, Rex Harrison, in
My Fair Lady.
“Let’s go to bed now. But I do love the idea that these actors used their best skills, acting, and just overlooked their weaknesses. It’s like playing a hand of bridge. You work with what you’ve got.” I pay the bill and manage to pull her to her feet.

It takes a half hour to get back to our room, she moves so slowly. Lowering Mom into the hot bath, I picture her lowering me into our tub on J Street when I was a year old. It’s all in the home movies. Now Mom’s body looks as bad as any prisoner
from the World War II photos: flesh with purple sores hanging on protruding bone. “
Guys and Dolls,
” she says happily. “The opening song, about a horse right here, always ends in ‘can do.’ I love that. It’s really how I’ve tried to live my life. Now hand me a washcloth, darling.”

Sardi’s comforts Mom. She goes to this restaurant to be back in the 1940s. She is telling me the story of her grandmother auditioning for a part on the stage. “She got a call-back, and was so excited, and went home to tell her father about it. He told her ladies did not act on the stage and forbade her to go back. She was heartsick, but she stayed home like a good girl.”

In fact, Mom and Dad met for the first time on the stage at the East High senior production of
Pocahontas
. She played an Indian maiden and Dad was a stagehand. As the curtain came down during rehearsal, she was standing right where the curtain would hit her on the head. My father grabbed her shoulders and shoved her out of the way, where she promptly fell down. After picking her up and apologizing, he asked her out the next day.

There’s the whole story of our family, I thought. Stagestruck wannabees. Mom is gazing at the pictures on the wall. “You could have been up there,” she says.

“Doing what?” I ask.

“Oh, as the playwright. Or the actress or singer.”

“Mom. I have spent my life staying home, just like my great-grandmother and grandmother and you. I did community service and had little paid jobettes, not a career. They don’t put pictures of us on the wall at Sardi’s.”

She chews her cannelloni. “Well, maybe they ought to.”

Getting a cab after a matinee with Mother in tow requires
beating out other old ladies only slightly less frail. It always works, but it takes everything out of me. Once settled in the cab, I have to tell the driver, “The Marriott Marquis, please.”

“Lady, it’s right there,” he says, pointing one block ahead.

“I know. But my mother can’t walk that far.”

The cab driver sighs and we lurch forward. It’s hard to say this, because inside this frail little woman is the strongest human being I’ve ever known. She has shrunk to the size of all the Japanese tourists flooding the halls of the Marriott, but I think she could whip them all in a fight. My back is killing me from hefting Mother, hefting suitcases, grabbing cabs. It will take me a week to recuperate, but Mom is simply glowing. As usual, she’s just playing from the strong cards in her hand. After all, she points out to me, this is her Very Last Trip to New York.