That Went Well: Adventures in Caring for My Sister (11 page)

S
till trusting the group home and sheltered-workshop system, I visited Irene at her apartment occasionally and had her to family dinners and birthday celebrations. I was still worried about her situation, as she was gaining weight steadily and did not look all that happy, but I was busy with our family.

Our daughters Katy and Marriott had each found superb men to marry: John for Katy, Craig for Marriott—men Paul and I can hardly stand to call sons-in-law because they feel like our own sons. We had two weddings two years apart, and Irene was in charge of the guest book for each wedding.

Later on, when my elder daughter, Kate, became pregnant, Mom could hardly wait to meet her great-grandchild, due in February.

On the second day of December, almost three months before Katy’s delivery day, I called Mom. Our plan was to get her Christmas tree that day. “You know, honey,” she said, “it’s so cold out, I don’t want to look all over the lot for a tree. Will you go
pick one out, you know the kind I like, and I’ll just walk to the Alta Club for my lunch and bridge game.”

“Mom, it’s cold enough out that I ought to come drive you over there.”

“Half a block? That’s ridiculous! I’m fine, and I can walk home, too. Gaylie (her best friend) will walk me down the stairs at the end of the afternoon.”

“I’m afraid you’ll fall.”

“Well, don’t be. Every time I fall, I keep thinking to myself, ‘Well, good. This is it, I’ll be dead now,’ but I never quite fall hard enough! It’s very vexing, because that is a perfect way to get out of here: just, you know, boom, it’s over. So don’t worry about that. Worry that I won’t fall hard enough!”

So I went shopping for her Christmas tree. I found a perfect one for her, blue spruce with lots of room between the branches so that her gorgeous angels and crystal ornaments would show off well. I was just pulling into my own garage, planning to unload my groceries and then go down to deliver Mom’s tree, when Paul called. “Where have you been? I’ve been trying to reach you for an hour. Your mom fell on the steps of the Alta Club and is still unconscious. I’m at LDS emergency room. Come over.”

The doctor greeted me and told me, “She’s on life support. The machine is breathing for her, but that fall was so hard she is brain-dead. I can keep her alive like this, but she could remain in a coma forever. I don’t think she’ll regain consciousness. If it were my mother, I would let her go.”

Mom’s friend Gaylie later told me that she was helping her down the stairs. There was no ice on the stairs. Mom suddenly pulled away from her, as if she were being pushed by an unseen hand, and fell, hitting the back of her head so hard that the
medical examiner had to look at her to make sure she had not been murdered with an axe. Gaylie said, “Terrell, I wonder if your father’s spirit came along and pushed her, hard. That’s exactly what it felt like. I couldn’t grab her to help her, she went down so hard and fast.” Just as Mom had said to me that morning, “Worry that I won’t fall hard enough.” She got her wish.

I called Irene and had one of her companions bring her to the hospital. She wept with me, held Mom’s hand, and understood. Please, Lord, tell me, how can Irene go through these huge crises of our parents’ and Bammy’s deaths with quiet dignity and then scream when someone touches her purse or her doll?

Uncle Bob, Mom’s brother, came. We sat by her bed for a long time. Then, together, we let Mom go. We knew that, in her soul, she was cheering. It was time.

Irene asked if she could stay with me for a couple of days—she felt so lonely out at her apartment. I went out and picked her up, telling her staff she needed to be with family. But when it came time to go to the funeral home and choose a coffin, I didn’t think she’d be able to handle that. So I called Uncle Bob and asked him if he could take Irene for an hour. “Hell, Tiger. What would I do with her?” (One hour, Bob? Just one hour? I was stunned that he wouldn’t help me.)

“Okay. Never mind,” I said. I didn’t even think of asking my girls to take her. It had been my habit not to bother them with Irene except for family functions where I would be there to supervise her. So I took Irene along with me. It turned out she did just fine with coffins.

What she kept asking me was if she could please have Mom’s apartment and live there. On the face of it, this seemed like a reasonable solution for her. But the place wasn’t configured well for
a staff member to care for her there, and downstairs on the first floor sat Irene’s idea of heaven: a little Quickie Mart, chock full of deli items, soda pop, and potato chips. She would try to live in that store and drive everyone nuts. I had to tell her we couldn’t afford for her to stay in Mom’s apartment; I needed to sell it and put the money in trust for her, and maybe we could find something else, not so expensive. I was exhausted, and felt so guilty that I started to cry about not being able to let her stay there. She put her arm around me and said, “That’s okay, Terrell. I like the money too.”

At Mom’s funeral, after my daughters and I spoke about Mom’s life, and Irene said a very gracious closing prayer, we asked the audience to feel free to stand up and tell any stories about Mom they wanted to share. Her friend Blanche Freed, who had been playing at that last bridge game at the Alta Club, said, “You know, I went to school with Afton and Dick. Dick’s mother had me all picked out for Dick, and then he met Afton! Well, she got that lovely man, and I got…” She turned to look down at her husband, sitting there next to her. She looked as if she had got tenth prize. “I got David here.”

When everyone stopped laughing, she went on. “Afton Harris went out of here in the best and fastest way possible. I so envy that. And to top it all off, she won the pot that day in our bridge game!”

When I went to Mom’s condo to go through her immaculate closet, there was her black fox fur muff that she’d had since the 1940s. I buried my nose in it, trying to inhale some of my childhood: that elegant smell of Joy perfume and fresh violets that always surrounded her.

I pictured her as a child herself, in her dress and hat and
patent leather shoes, skipping along with friends, playing with her dolls, feeling full of love and hope for her own future. I pictured the terrible disease of rheumatoid arthritis invading her just after her eighteenth birthday, while she was sailing to Europe on a tour with her girlfriends. I pictured all the pain she had experienced, and the crippling of her hands and knees and feet. I pictured the agony of Irene’s birth, and the constant challenge of dealing with her own physical pain while trying to cope with Irene. And I pictured her sitting under the tree at the Wasatch Riding Academy, reading her novel, making sure her elder child got to live her fondest dreams, too. It just came crashing in on me how Mom had done her level best for both her children. I looked at the neatly folded panty hose in her drawer, along with her beautiful white leather gloves, saved in hopes they’d come back into style. How did she get those panty hose on every day, when her hands wouldn’t work, and her knees wouldn’t bend? How did she even face every day?

Oh, Mom. How can you forgive me for not understanding you more?

You can really mess up a fur muff with tears and a runny nose.

To this day, Mom is with me. Whenever I wrap a package, I remember her elegant boxes with lovingly tied ribbons, and I hear her voice: “Put that little flower through the ribbon there. That makes it fancier. Tie a candy cane into that bow; it goes with the wrapping.”

But her main trademark in life was making every person she met feel special and important, from her bridge friends to the lady who cleaned her house. Every day she headed to lunch with her friends, played bridge like a champion, and never complained about her pain. Now and then she would go to our city’s
fabulous candy store, Cummings Candy, and buy chocolates to take to the nursing home where Bammy’s friends still lived and played bridge.

When I think of all of us trying for our version of a successful life, which nowadays seems to mean being very rich and very famous, I think of Mom limping into a nursing home to deliver those chocolates to a dear and aging friend, and I think I know what a truly successful life might look like. She made everyone she met feel welcome, as if she were honored to be in their company.

The line to get into her funeral went halfway around the block, and standing in it were old friends, their children, waitresses from her clubs, women who were in her Brownie troop as children. It seemed to include everyone who had ever met her. Talk about a class act.

I Have My Own Tantrum (Again)

Mom’s death had now left me with three things: a medium-sized inheritance that could be applied toward Irene’s improved wellbeing; a big concern that I wasn’t giving her the life that Dad had described to me before he died; and a truckload of guilt for having a nice life, a nice home, and a loving family all around me.

So I turned into a carping fool. A few days after Mom’s funeral, I went out to visit Irene in her latest supervised apartment, across town. I had tried to ignore the messiness when I went to visit her. Normal people are not all neatniks, I told myself, remembering my teenagers’ rooms. Relax. Let it go. Let her have her own life and experience. I had been telling myself that for
about five years while she lived in one supervised apartment after another.

But this day I had bought her some new underwear, and as I was putting it in her drawer, I noticed that all the other clothes in the drawer were damp.

I went into the front room, and there her staff member sat, watching her favorite TV show. I held out a pair of damp pajama tops. “Sherry. Honey. Come feel this,” I said. Sherry, who looked about seventeen and very pregnant, dutifully rose from the couch and came to feel the damp top. “What’s wrong?”

“They’re wet,” I said, staring at her. “They were in her drawer. They were never dried in the dryer.”

“Oh,” she said, staring back at me. “Well, it didn’t happen on my shift.”

As long as Sherry was up off the couch, I took the opportunity to take her into the kitchen, where dishes were piled up and pizza boxes were spilling out of week-old garbage. “Is this the way you think the kitchen should look?” I ask her.

She said, “Well, see, Irene’s supposed to do this stuff herself.”

Irene was taking a bath at the time, so I felt perfectly comfortable telling Sherry what I thought, straight out. “Listen, Sherry. Irene is not lazy and spoiled. She is mentally disabled.”

“We call it special needs now.”

“Call it what you want, sweetheart. She doesn’t know how long clothes are supposed to dry, and she will never get her dishes right or take out her own garbage because she doesn’t even care if it’s piling up! She is fifty-five years old, she won’t wear her glasses, and she can’t see the dishes well enough to rinse them, so they go in the dishwasher caked with food that doesn’t come off. She needs more help than you guys are giving her.”

Sherry, whose paycheck was less than she could make at McDonald’s, looked at me and said, “They taught us in training not to do their work for them. When they’re in a supervised apartment like this, they’re supposed to do all their own work.”

“I see. So your job, then, is to sit on the couch and watch your favorite shows for your shift?” I felt sorry for Sherry, but sorrier for Irene.

Sherry leaned from one foot to the other. “Do you want to call my supervisor? She’ll explain the program to you.”

All I needed was to have the program explained to me. My heart was pounding with anger. “Good. Let’s just give her a call, shall we?”

I felt I was familiar enough with the rules to have a little chat with the supervisor. Fifteen minutes later she showed up—a woman whom I’ll call Michelle. Irene was out of the bathtub now and in her pajamas—some dry ones, not the wet ones—and listening intently to my exchange with Michelle.

“I would like for you to explain to me what the job of this staff is,” I said to Michele.

“Their job is to make sure these people have the least restrictive alternative to a normal life, and to assist them in becoming even more independent.”

“Don’t give me the bureaucratic gobbledygook,” I said, “because I wrote it. Just tell me how a filthy kitchen and wet laundry fit into this scenario.”

She narrowed her eyes. “When Irene is tired of dirty dishes and wet laundry, she’ll do them right,” she said.

“So you’re just letting her wallow in it until she’s sick of it?”

“That’s right. She’s perfectly capable—”

“No, actually, she isn’t. That’s why she needs help.”

“Well, we’re not going to wait on her.”

“How about a little assistance for her while she’s trying to do it?”

“She wants us to do it all. She’s spoiled.”

“She is also a little disabled, have you noticed, Michelle?”

“She’s not as disabled as you think.”

“Okay. Call her Superwoman. But yesterday I peeked in, and I found another of her helpers, Matt, the one with the cowboy boots, lying on her couch watching a football game, and yelling, ‘Irene, go do your dishes.’ She was standing there, asking Matt if she could see her favorite program, which is
ER,
and he was telling her, no, he was going to watch the game while she did her dishes.”

Michelle stiffened and folded her arms. She opened her mouth to speak, but my cosmic anger and I were on a roll. “Is pizza all you guys ever get for dinner? Could someone please cook some fresh vegetables? My God, she’s gaining weight—sorry, Irene, but you are—and I have to order her clothes from special catalogs because she’s now a 5X and no one in town carries that size! Listen, your program is not as advertised, and believe me, not as originally designed. You can trust me on this.”

Michelle stood up and narrowed her eyes even further. “What were you doing driving clear across town to check up on us,
two days in a row
? You know what you are? You are a raging codependent! My God, why don’t you get a
life
?” And she stormed out of the apartment.