When I wake up this morning, I discover my sub-conscious, Jeeves Junior (Jeeves was Mother’s name for hers), has thought of a way to help my sister. I can easily drive over to Advantage House, collect the shirts that have missing buttons, and repair them at home while I’m watching Sunday Morning. When I return them, I’ll bring my favorite sneakers for Jan to try, the white ones made of a lacy-looking fabric.
The door to Number 201 is unlocked, but the room is dark. I ask my sister why she has the draperies pulled.
“If I feel like closing my eyes, I can’t do it if it’s too light in here.”
Jan goes to the window and partially opens the curtains She picks up her white jacket from the arm of a chair, puts it on, and points.
“Look at the back. See how my shirt hangs below it on the left?”
Yes, half an inch is below the jacket for a short way, then it disappears. This is because my sister’s left shoulder is lower than her right. Mine is vice versa. Ah, the mysterious power of genes. I remind Jan about the way Ellen Degeneres wears her shirts. She says testily that she doesn’t care what Ellen Degeneres does, she wants her jacket to cover her shirt and her rear end too.
I never liked being snapped at before she got Alzheimer’s, and I don’t like it now. The books say I’m supposed to turn the other cheek and change the subject. Instead I snap back at her, as angry as she is.” Then I pull myself together and say more quietly, “How about trying on these sneakers?
I take off the white leather sneakers I’m wearing, so Janeth can try them. She has calmed down, too. She tests the way the shoes feel by trying to lift her heel out after they are laced. The fit is snug.
“I guess these are all right”
I tell Jan I have to go because I want to see the rest of the Sunday Morning show. She gives me two shirts with missing buttons. I can still feel the air pulsing with our earlier anger, but we manage to exchange strangled hugga huggas.
Back at home, I turn on the TV, get out my sewing box and paw through my collection of buttons until I find one similar enough to put on the sleeve of the tan shirt. Who’s going to notice if it isn’t as pearly as the others? I cut the pearly one off the sleeve, replace it with the passable one, and then sew it in on the front in the spot between its mates. As I wind the thread around and around the button so it won’t be too tight for the buttonhole, I recall that it was my mother who taught me this trick. Bless her heart, she was no more domestically inclined than her younger daughter, what with her career as an opera star, but she did know a thing or two.
I look at the pale green shirt and can’t find one button that isn’t securely attached. I get out my magnifying glass to be sure. I will bring this tool with me tomorrow and turn a light on in Jan’s apartment, so she can see for herself.
My sister did her best to think up roadblocks as to why she couldn't go via The Ride to her neurologist tomorrow at 10:15. This is the very time when she always has to hurry to a bathroom. She won't have time to floss her teeth (I tell her to bring the floss with her). Will the doctor know what he's supposed to do? (I tell her this is a follow-up appointment, so he'll know what to do.) I tell her she will be going to other such appointments using The Ride, so it would be a good idea to get used to it. Jan says she needs to see an eye doctor, but she doesn't want to go back to the previous one because he was rude to her. My sister’s negativity sometimes strikes me as funny. This is one of those times, but I restrain my laughter.
I call Jan at 4:30 to remind her to go down to supper. She’s had a busy day seeing the neurologist, taking The Ride, accompanied by a home health aide named Jackie.
“But I’m still full of lunch!” she says. “I had two desserts at the late lunch!”
"The late supper is only an hour from now. Maybe you can just skip it."
“I don’t want to do that,” she says. The words are musical to my ears.
Jan calls me back, this time sounding frantic. “The doctor gave me some pills I’m supposed to take! They’re LOST!” Her voice is so distorted I misunderstand.
“They’re black?”
“NO, I LOST them, L-O-S-T them! I can’t find them anywhere! What am I’ going to do? It’s a disaster!”. I say we don’t know yet that it’s a disaster. Maybe Jackie gave the box to Celia, the nurse.
Janeth is not reassured. “I’ve lost the samples the doctor gave me! They were in a box!” I cannot calm her down, and I’m losing patience. I tell my sister there is absolutely nothing I can do about the problem now. Let’s see what happens and hope for the best.
I call Jan in the morning, before she leaves for breakfast. I’ve thought of something to make her feel better. If the samples are lost, it’s not her fault, it’s the doctor’s fault for giving her more responsibility than she can handle.
“He should know that you forget things and lose things because of your illness. It was stupid of him to hand you a box of samples.”
“He told me I should think positive. How can I think positive when these terrible things happen? He told me I should do crossword puzzles to exercise my mind. I’ve never done a crossword puzzle in my life.”
“It’s easy, I can help you with that.”
“But I’m no good at coming up with definitions. I’d never be able to do that!”
“You’re a superb writer; I’ve seen the way you fine-tune what you’ve written in your letters.”
“But I can’t define words,” she insists. I resolve to get her a crossword puzzle book for children, so she’ll see that solving them isn’t as difficult as she thinks. She might even enjoy the pastime, the way Kathie and my ex-husband did when he and second wife Aliceann and their six cats and two dogs were living with Kathie and our son-in-law. I don’t try to tell her anything about that chapter in my life. It would take thousands of years.
When I talk to Jan this evening, I am unable to distract her from agonizing over the lost box. I go to bed with her final words hammering my ears.
I start today making phone calls, the first an effort to reach Nurse Celia, but her line is busy. I call The Ride, listen to all the electronic options, finally get connected with a real voice. The voice turns me over to the dispatcher. He puts me on hold while he checks the car that transported my sister on Tuesday. Sorry, he says, nothing was left behind. I call the number I have for Dr. Martin’s office and get a recording. Maybe I called a wrong number, or maybe he’s gone on vacation, as my sister told me. I look through the Martins in the South telephone book. Can’t find the one on Southern Artery. Look through Physicians and Surgeons, can’t find the doctor.
I try Celia’s number again; maybe she knows something. Indeed she does, she has the box on her desk. “Jan came to me this morning at nine, very upset. I told her not to worry, everything was fine.”
I call Janeth and say, “You must feel very relieved.”
“I must feel relieved?” she asks. “That’s all I could hear with this air conditioner going.”
“CAN YOU HEAR ME NOW? I JUST TALKED TO CELIA.” There is something satisfying about shouting my message.
Jan says maybe some of the pills were found, but the box doesn’t look the same size as the one she was given.
“YOU KNOW YOU CAN’T DEPEND ON YOUR MEMORY. I’M SURE IT’S THE SAME BOX.” I end the conversation with, “IT’S NINE-THIRTY, AND I HAVEN’T HAD MY BREAKFAST YET. I LOVE YOU [but it’s a stretch at the moment], HUGGA HUGGA.”
From: Margo
I had a fire drill almost every day usually because either my mom's glasses or her television’s remote control was missing. Or, ugh, she felt a sudden craving to smoke a cigarette. Her smoking was an ongoing bone of contention. My mother was forbidden to keep cigarettes in her possession because she could not be trusted not to smoke in her apartment. She was adept at sneaking contraband from the smokers lounge into her apartment but never connected that any nonsmoker could easily smell the cigarette smoke in her apartment. Or that anyone with eyeballs could see the stubbed out butts under her bed.
A lot of Alzheimer's victims go super skinny. I am not sure why this is. Does the victim forget to eat? Or is there paranoia that food will hurt the victim's perfect physique in some way? I have decided that I don't have Alzheimer's yet. I have such a reassuring, comfy tire around my middle.
P.S. You are coping with Janeth's freak-outs brilliantly. You are so much better at all this than I was. I nearly bit my tongue off a couple of times.
To: Margo
Jan's anxieties about food has been affecting her weight for years. I thought she surely would eschew the yummy desserts at Advantage House, but she loves to see the cart come around and often has two desserts. I can see that her rheumy eyes are looking better already. She was amazed that macaroni and cheese could be so delicious, having studiously avoided white and "gelatinous" foods until she moved to assisted living. She's even eating sandwiches!
Jan also has the notion that she can diet away her disturbing tummy. No use telling her I have it, as do most octogenarians. She must have lost twenty pounds during the years before I took on the caregiver role. Your mention of a perfect physique fits my sister the perfectionist. A slightly raised vein is cause for alarm and a referral to a vein specialist. She wants a haircut exactly like that of Nurse Celia, but it can't be done because her hair is no longer thick enough to taper charmingly in the back. I'm glad she's begun to take an interest in how she looks but wish she'd be more accepting of things neither she nor I nor hairdresser nor Goddess can do anything about.
I do not see myself as being a proper coper. You nearly bit your tongue off to shut yourself up. All too often I fail to do this. Somehow, though, she continues to forgive me my trespasses as I forgive hers.
From: Linda
Sigh and sigh again. Mom puts up so many barriers to anything new. This is the same woman who pushed food dishes in my face because it was a meal I'd never had before. Where's her sense of adventure these days?
I have an idea. Why not let a day or two go by before putting so much effort into finding resolutions for mom’s problems. See what happens. Maybe she would manage somehow; if not, THEN follow up. Are you afraid the tasks would build up rather than disappear? I don't know, it’s just a thought.
To: Linda
It's exhausting at times, but I am fascinated by Janeth's reactions to her current life. I guess it's the journalist in me, rearing its curious head. She really isn't all that different from the mom/sister you and I knew before her paranoia turned into Alzheimer's, cruelly adding memory loss to her anxieties about everything and anything. (I blame our father and so does Kathie.)
Even as I grieve for her, I am making mental notes to be jotted down later, with a pinch of humor if possible. I would miss her if I didn't talk to her at least once a day.
I'm aware that I am not immune to this terrible disease. I hope my family will view my oddities with the same mixture of love and wry amusement that Jan inspires in me. And if I see peeing on the floor in my future, I hope I'll have sense enough to make my exit before that happens.
I actually was able to get your mom interested in doing a couple of crossword puzzles. Once she caught on, she was good at it. I must remember to get her Roget's Thesaurus and her dictionary from her old apartment.
I drive to Hingham, hoping to get a crossword puzzle book at Buttonwood’s Children’s Book-store. It is no longer there, so I try the paper store across from the post office. I am advised to try CVS. As I’m going out the front door, I forget there’s a step and stumble headlong toward a trash bin. I regain my balance and say to a gentleman sitting on a bench, “Boy, am I lucky!” (Kathie urged me to take it easy today. She would be very unhappy if I broke a leg looking for crossword puzzles.) The clerk at CVS suggests I try the Over the Moon store for children at Lincoln Plaza. I find a book of puzzles, not too difficult and not too simple, ideal for my little sister.
Twelve-fifteen is a good time to visit. I know she will be concluding her early lunch in the dining room, and I enjoy talking with her tablemates. Ruth and Patricia are finishing their roast beef, which they say is very tender. I can’t tell from Jan’s plate if she dove off her no-beef diet or not. Whatever she had, she is like me, a slow, methodical eater.
The waitress announces that a new dessert is on the menu . . . vanilla ice cream cones covered with chocolate bits and chopped nuts. When the three ladies go for it, the waitress asks if I’d like to have one. I haven’t had lunch yet, but there’s no one to tell me I’ll spoil my appetite.
The cones are frozen and wrapped in paper. The waitress shows us how to peel off the top and wind down the rest of the paper. Looking as pleased as a princess, Janeth shows us that someone has already performed this service for her. Her pleased expression changes when she finds that the chocolate is only on the top of the cone.
“I like chocolate,” she complains. “I hoped there would be more than this.”
To make conversation, I ask Ruth and Patricia if they know what will be on the menu for supper. The question has disagreeable repercussions. Oh yes, says Patricia, all the residents get menus in their mailboxes.
"Except me,” says Jan. “Because I’m in a temporary apartment.”
“She gets one, too,” Patricia says. Jan shakes her head at me.
“Do you want me to show you?” says Patricia. “I can show you the mailboxes.”
I sense that Jan is getting worked up for some reason, and I say, “My sister can show me on the way up to her apartment.”
I follow my sister and Patricia. Jan is muttering angrily to me that Patricia doesn’t know what she’s talking about.
“SEE?” says Patricia, pointing to a wall of cubicles, one of which has the name Janeth Black above it. “There’s a mailbox for her, too, right over here.”
I tell her that my sister’s mail comes to me, which may or may not spread oil over troubled waters.
As soon as we’re alone in the elevator, Jan tells me this isn’t the first altercation with Patricia. I say she’s doubtless a sick woman, just humor her or ignore her. Janeth scowls and points to her new foe’s apartment as we walk by. “Patricia Paine. . . that’s a good name for her.”
I sit down on Jan’s loveseat and show her the size eight and a half blue sneakers I brought for her to try.
“I don’t need to try them, I can see they are too narrow. I need a wide for my swollen toes.”
I produce the crossword puzzle book and say let’s work on one of these. For the next half hour we fill in the spaces, with Jan catching on rapidly. Her perplexed frown is gradually replaced by a look of interest.
There’s a knock on the door. Carla is here to talk to my sister about what furniture she wants to buy for the apartment she’s moving to. The perplexed frown reappears. Jan has no idea how to make these decisions, so I make them for her. Finally Carla asks if we’re ready to hear what each item will cost.
“Just tell us what the total is,” I say, as engrossed as my sister in our new hobby
“Okay, it’ll take me a few minutes, so go back to your puzzle solving.” I am elated when Janeth comes up with a word I couldn’t think of for “Don’t blank me, I might do something I shouldn’t.” “Don’t tempt me,” she says.
“Good for you, Jan!” I show her how this one word helps us fill in three more.
Carla says she has the total. “It’s nine hundred dollars.” Jan nods, unfazed and undistracted from the puzzle.
“Wow!” I say, “You could spend that much just on a bed.” She even gets two telephones along with the tables, chairs, lamps, and loveseat. And a bedspread even.
“I’ll bet Paris Hilton would spend nine thousand dollars on a bedspread and not think twice about it,” I say.
Not long after Carla leaves, Nurse Celia knocks on the door. She wants me to call Lauren, who is a geriatric care management advocate. Lauren will take the responsibility for doctor appointments and transportation. Celia tells us she has a problem with Janeth’s case because she doesn’t know what’s going on. With Lauren’s help, we will all be much better off. I promise to call her as soon as I get home.
Jan and I complete most of the puzzle we’ve been working on. We can’t finish the upper right-hand corner because we never heard of the TV cartoon character cited in 14 across. I turn back to the beginning puzzle. It looks as if it will be much easier. It is. Jan looks over my shoulder as I fill in the words she comes up with. “That isn’t a very good K,” says my sister the perfectionist.
“I know it. “When you do these by yourself, they’ll look much neater than mine.”
“I’ll have to use a pencil with an eraser. . . .”
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