Wednesday, August 9, 2017


Jan ‘s apartment is dark, except for a sliver of daylight between the draperies.  “Let’s open these so we can see what we’re doing.”
My sister is sitting on her sofa in the white cardigan.  The sleeves do not look huge.  They are not too long. They end at her wrist and are a perfect length.  Al Zheimer, you mean old Scrooge, why do you put these annoying notions in my sister’s head?
I ask her to take the cardigan off and show me the stain.  It is so faint, no one in the world could see it except Janeth or a jeweler focusing his loupe.  A dab of detergent will remove the spot if I can find it when I get home. 
Jan puts on the pink shell with its short sleeves, taking care to preserve yesterday’s hairdo.    She picks up the sweater and comments on the small size of the buttons.  She unbuttons the top two, then pulls the garment over her head.  Linda and I were convinced the day would never come when her mom would risk rumpling her hair with a pullover.  Two fantastic accomplishments in one day, Old Mutual and the Amazing Pink Sweater Set.
 “It’s beautiful,  let’s take a look in the mirror.  See?  No more gaping at the neck, no more shirt collars rumpling the back of your hair.” 
“I would never wear the shell by itself.  I don’t wear short sleeves because of my wrinkled arms.”  
“I don’t for the same reason.  Mother didn’t for the same reason.   I remember she would buy a short-sleeved dress she liked, then take it to the seamstress.  Mrs. Towle would replace the short sleeves with long ones made of chiffon.”
Jan decides to accompany me to the lobby.  She is halfway through the door when she realizes she’s forgotten her cane.  She becomes increasingly agitated, as she goes from room to room, seeking the cane.  “This happens all the time!  Things disappear into thin air!  Where is it?  Where can it be?” 
“You probably left it somewhere, Jan.  Someone will turn it in to the Lost and Found.” 
My sister is moaning, “Oh, no, what am I going to do?”Then she gasps with relief when she spots it beside her bed.   The cortisone shot relieved her back pain, so I doubt that she needs the cane, but she’s fond of it.   
 “Let’s check to see if there’s an exercise group. Did you read the article I gave you about exercise being good for your mind as well as your body?”  Yes, she says. 
We find Margie Wollams’s mother Ruth, drinking a cup of something that looks like water.  “It is water,” she says.  “I wish it were something stronger!” 
“I’ll smuggle in some gin next time I come.”
        Jan joins the exercise group, and I go home to work on the stained sweater.  I administer detergent and cold water to the almost invisible spot and put it in the dryer.  It looks as new as the day Jan paid twenty dollars for it.  If she says something negative about it, I’ll eat it.            
       “Today is still Friday?” Jan asks when I call this evening.  “The 28th?  And tomorrow is Saturday the 29th?  And the next day is Sunday?  The thirtieth?”
       “ That’s it, smart girl, you got all three exactly right.  Did you get a lot of compliments on your pretty new sweater set?”
“No, I didn’t, and it’s not a sweater set!  The outside one is pink, and the one underneath is white.  They don’t match!” she tells me indignantly.
What would be helpful here is a saint.  Maybe even Himself, the saintliest of them all.  Anger, as unexpected as a flash of lightning, explodes in my head.
 “It is NOT WHITE, Janeth!  I saw it with my one good eye! It ABSOLUTELY matches the cardigan!”  If a snapping turtle could talk, it would sound like me.  “Linda was right.  She said whatever she got, you’d complain about it.  She spent hours walking around in JC Penney’s, looking for matching sets.”
“I told her she shouldn’t send me another one,” my sister says mildly.  “This one’s too big, too.”
“IT IS NOT TOO BIG!  It looked perfect!  I have to hang up.  I shouldn’t be talking to you like this.  I’ll call you tomorrow.  Sorry, dear.”  She says okay.       
 Ted is having dinner at Kathie’s and bringing a movie, so she doesn’t call me until ten.  I tell her what happened with my sister.  She consoles me with sympathy and love.
 “Why don’t you stay away for a few days?” 
“I can’t do it.  She’s sick. She can’t help it.  She needs me.’                   
Jan calls at six, saying she wants to apologize. 
“You don’t need to do that, sweetheart.  I was planning to call you in a couple of hours.” 
“When I looked at myself in the mirror, the shell appeared to be white when I was wearing it.  But comparing it with the sweater after I took it off, I could see they were the same color.”
I tell her I got the stain out of her white cardigan, but I don’t understand why she thinks the sleeves are huge and too long.  “The thing is, Jan, because of your illness, your perceptions are so keen, you sometimes carry them to extremes.”
My sister has the grace to laugh.  “Speaking of which, this reminds me of Alice.  She finishes a meal, then returns to the dining room a few minutes later to have her lunch.  When she’s told she already had it, she’ll say, `But I didn’t have dessert.’  She doesn’t remember the pie she just finished, and she wants a dessert-to-go.  She’s round as a berry and getting rounder.  Norma keeps murmuring to me about how sick poor Alice is; she wants to be in cahoots with me so we can gossip together.  I don’t want to do that.  I know she is talking in the same unkind way about me.”
Remarkably, this is one of the rare occasions when Janeth speaks without stammerings, and thwarted reachings for words.  She is as articulate as she was in the days before Alzzheimer’s launched its one-sided war.
“Robert has been saying of Norma that she’s going downhill.  He thinks I can hear all his mutterings, but I catch only a few words.  The reason she latched onto you, Barbara, is because she wants to be invited to our outing.  She took me by surprise when she came up to me and gave me a kiss. 
“Robert is looking forward to having lunch with us in a restaurant. He doesn’t like the food here either.  I keep thinking they’ve given me the worst meal I ever had, then the next day, another one comes along that is worse.  Today we had something called Shepherd’s Pie with anemic looking gravy and corn I don’t eat because it gets in my teeth.  There were a few morsels of some kind of meat, lamb I guess; the whole thing was tasteless.  They give you very little to put in your mouth in this place. They starve you to save money.  You’re expected to live on desserts.”
I have been interjecting comments like “What a shame!” regarding Alice and “No way” concerning Norma’s joining us for lunch.  
“Wasn’t there a time when you didn’t eat meat at all?”   She says she has no choice.  She has to order something.  Even the chicken sandwich with extra chicken has been disappointing lately.  “It’s filled with celery, and it takes me a long time to pick it out.”
I feel unable to do anything but listen. “I’ll bring your white cardigan on Monday and we’ll hug Happy New Year.”

My sister is in despair when I ask if her meds have come this evening.  “Yes, and it seems as if they’re coming three times a day.” 
“No dear, only in the morning and before your bedtime.” 
“I don’t know what I’m doing.  I’m afraid I might be overdosing.” 
“Doesn’t the aide stand there when you’re taking them?” 
       “I was trying to measure the syrup and she grabbed the bottle and did it herself.”
       “You were probably being very careful and slow, so she may have wanted to hurry you.”
Janeth’s voice sounds deeply depressed the next morning, Some new trial must be afflicting her.  I tell her I’ll be there in twenty minutes with her white sweater.  We meet in the library. 
“I’m in trouble,” she announces miserably.  “I asked the aide what her name was and this was her answer. `I’m going to another resident’s apartment, I’ll tell you some other time.’  It took her longer to say that than it would to speak her name.  She was irked with me because I didn’t remember it.”
Now I’m irked. “All the aides ought to know most of the people here have memory problems.  The fault is with her, not you, Jan.  If this happens again you could say, `Okay, I’ll call you sweetheart because you are such a dear.’” 
“She’s such a what?”
  “A dear.  No wait; that would sound sarcastic.  Just tell her you’re going to call her sweetheart.” 
“That’s a good idea, but I may not see her ever again and if I do, I’ll forget what to say.”
I show her the white cardigan.  She examines it, can hardly believe the stain is gone.  She had said the sleeves were so long, she couldn’t turn them up to shorten them.  They are no different from the black one she is wearing; the sleeves end at her wrist.  Why do her eyes deceive her so radically, the way an anorexic perceives herself as fat?
I have brought a spiral notebook, so an aide won’t have to use a paper towel to jot down a reminder.  On the first page, in big letters, I have written advice about the amount of Sennacot she should take.  “Use less and less Sennacot if your bms start getting softer.” I realize this sounds ludicrously vague and unprofessional, but have no clue how else to help.
It’s time for her lunch.  I leave the white cardigan, the notebook, the letter, and Margo’s Christmas card.  The table is covered with obsoleteness:  store tags, August and September Advantage House calendars, an empty Walgreen’s bag.  I find a small spot to display the card.  Before I leave I stop to discuss Jan’s concerns about the meals with receptionist, Joan.  I’m wondering if my sister could routinely have a serving of chicken breast or fish for lunch and supper.  Joan shows me the menus for the coming week.  The entrees sound very good.   She advises me to talk to Celia. 
I am sidetracked by a young woman working at a computer.  She looks up, smiles, and introduces herself.  Gail is the full-time aide for a relative who has Alzheimer’s.  Next month she is  moving to a nursing home, which will be much more expensive than Advantage House.  I tell Gail I believe my sister’s savings will be sufficient for three or four years or until she goes on Medicaid. 
“They don’t accept Medicaid here.  If anyone told you that, you’d better get it in writing.”   
Celia confirms this hitherto unknown fact.  Regarding Jan’s dissatisfaction with the meals, she says she’ll arrange for her to have chicken on days it isn’t on the menu.  
“You ought to look in at your sister and see what she’s wearing. She turned it down at first, then changed her mind.”   
       I poke my head into the dining room and see that Jan is crowned with a New Year's tiara.  I wished I had a camera   I notice they don’t have dog food for today's lunch:  shrimp in butter, stuffed mushrooms, mashed potato, and green beans.  Janeth gave me a delicious mushroom and confessed she'd already eaten seven shrimp.  I couldn’t have been more delighted when she didn’t offer me one of the remaining three.
“I’m still constipated, and I still have no idea how much Sennacot I’m supposed to be taking.” 
“See what it says on the bottle, Jan.”  She returns to the phone and reads a paragraph of irrelevant information. 
“What does it say about dosage?”
  “Mmm, something about what’s in each tablespoon, the letters mg after tablespoon.  I don’t know what mg means. It says it's effective within two hours or overnight.” 
“Mg means milligrams.  It sounds as if you should take a tablespoon full.” 
“If I took a tablespoon full, I’d be pooping in my pants.  I’d wake up pooping in my pants after two hours.”
I sigh inaudibly and take another sip of my Ovaltine.  “How about that Milk-of-Magnesia cocktail Celia showed you how to make?  It’s New Year’s Eve, let’s celebrate.”    
“I don’t remember how to make it.” 
“See if you have any prune juice in your refrigerator.” 
“Should I look and call you back?” 
“No, I’ll wait.” 
She returns with the prune juice.  “It says December 30th on the lid.”
        “Good.  Now get the Milk of Magnesia and see what it says on the label.” 
“It says it magnesium hydrox. . . magnesium hydroxide may interact with other medications.” 
 “Celia wouldn’t recommend a harmful product. Use your tablespoon and mix it into the prune juice.  I’ll wait.” 
She returns and says she got it down, but it wasn’t easy.  .
 I ask her how supper was and Hallelujah, she comes up with a reason to celebrate.  “I sprinkled a little salt on my mashed potato. . .  cold mashed potato.” 
I congratulate her, then tell her what Joan said about the quality of the food, such as butter, served by the kitchen. 
“The butter couldn’t possibly have anything like cottonseed oil in it. They're inspected every few weeks by the FDA.”
“The FDA are idiots,” Jan says.       
I blow high, wide, and wrathful. Surely I wouldn’t do this if the patient were someone other than my sister.  I would be more detached, more impervious to her stun-gun statements.  We have been raising each other’s blood pressure too many times for too many years.  Janeth remains quiet while I tell her off with phrases like painfully misguided, fancy yourself an expert on nutrition, self-destructive, denouncing perfectly good organizations!!!  Then I say sorry, I have to hang up.              

On the first morning of the New Year I call with an apology.  “I researched the Food and Drug Administration, typing the word `criticisms'.”
 “And what did you learn?”  
“I learned that they allow additives and chemicals in foods.  But they also mandate that foods must have ingredients listed, so people have a choice.”  Janeth doesn’t rub it in, although she must be pleased that again I am “eating my words.”  
I am phoning from my bed. I spent so much time researching the FDA and butter and e-mailing Kathie, it’s after nine.  My breakfast of cereal and fruit, topped off with vanilla frozen yogurt is on a tray in my lap. For some reason I never feel hungry these days.  The frozen yogurt is a reward for consuming the healthy contents of the bowl. 
“Those athletic shoes you gave me have been hurting my sore toe.”
“ Jan, this has been going on for months.  I don’t know what to do, Linda and I have tried very hard to find comfortable shoes.” 
“I know you have.”
“You can always wear the mesh ones.”
 “But they would get wet in the rain.” 
“So don’t wear them in the rain. “
“Norma has a terrible backache.  It is so bad, all she wants to do is lie down.  I think she has spinal stenosis, like ours.” 
“If she does, it would have to be diagnosed with a lot of tests before she’d get a cortisone shot—although you got one easily for the pain in your hip.  Is that still feeling better?”
“I don’t have hip pain but my toe hurts a lot.” 
       Something incredible has been happening.  It started when I gave Janeth an unimportant looking manila envelope. 
       “It’s a chapter from my friend Aura Kruger’s memoir, From Cotton Fields to Shakespeare.   She asked me to edit it.  It’s easy to read and really compelling.  You’re a good editor, Jan.  I think you’ll be intrigued with the way my emendations show up in blue ink.”
       That evening we discussed what Jan had read so far.  She could see how extremely difficult it must have been for Aura to leave her beautiful home in Newton and live with her children in the Deep South in a pair of trailers—the upheaval caused by her husband’s Don Quixote-ish dream of establishing a clinic to serve the rural poor.  She understood how hurt and dismayed Aura was when Leon made this life-changing decision without consulting her. What woman wouldn’t feel the same way?
      “I agreed with all your revisions,” Jan says, “but I noticed one place where there should have been a comma.”
“You were always a much better editor than I”
“What I did was so minimal, it wouldn’t blow up any castles in the kingdom.”  Her metaphor delights me.  
The next afternoon I was in my study when the phone rang.  It was my sister, who rarely calls me during the day unless there’s some kind of emergency.  There was. 
“I’ve come to the last page and it just stops and I don’t know what happens next. They’re in a psychologist’s office with their son, and the shrink has just said that Leon was the one who should be in therapy, not Charles.” 
“I’ll get right back to you,” I say, realizing I must have given Janeth only half of the 52-page chapter, assuming she would be incapable of reading such a long excerpt.
  I found the rest of the pages and told Jan I’d bring it next time I visit.  “Or. . .  so you won’t have to wait, would you like me to read it to you now?”   
“Yes, I’d like that.  I’m a very slow reader. I have to keep stopping and going back to remind myself of what I’ve read.”  I begin reading from the point where the chapter left off.

The new psychiatrist’s assessment was that Charles was seriously ill and would require therapy at least through high school.  He suggested that we cancel our plans to move to Mississippi so that Charles could remain under his care.
I looked to Leon to get his reaction and saw that his face had turned to stone, his eyes staring blankly off into the distance.   Clearly he was frozen, unable to respond.  Knowing how important our upcoming move was to Leon, I told the psychiatrist that we would not consider changing our plans.    We would leave as scheduled, and there would be no therapist there for Charles. I would continue to hold my son’s head above water as best I could.
The psychiatrist’s answer was chilling.  He said that having me help Charles would be the worst thing in the world.  He added that he planned to spend the first nine months of therapy convincing Charles that he hated his mother.  Only then could they begin the real work.  Horrified by his words, I stood up, indignant, appalled, frustrated.  I turned to Leon and said, “Come on, we’re leaving,” and we left the office without another word.

Jan kept gasping at what my friend had to go through and clearly wanted me to continue reading.  I would pause whenever Aura amazed both of us with her gumption, so we could discuss our reactions.  I stopped at the point where our heroine befriended a student in Mississippi whom “others saw as a violent man; I saw him as a troubled teenager.” 
In the five minutes remaining before Janeth would be going to supper, I told her Aura had hand-written her memoir, basing it not on journals or letters but relying on her photographic memory.   Her daughter Jo typed the accumulating pages into her computer.  “Aura named Jo after the tomboy in one of her favorite books, Little Women. 
“I know which one Jo is, Jan said.  I didn’t read the book but I saw the movie.” 
 Her eagerness to have my friend’s chapters read to her could give our relationship a whole new aspect.  We can cut down on those dreary afternoons when she sits in her darkened room, "just thinking," trying to remember the names of all the aides and what they look like, trying to figure out what the date is.
When I make my evening call at 8:00, I tell my sister there are many fascinating episodes yet to come, like the march organized by my friend’s students the day after Martin Luther King was assassinated.  
 “Aura and her son were the only white people participating.  A police car accompanied them with a rifle pointing out the window—not for their protection but to shoot them if they failed to march in an orderly line on the sidewalk, never more than two abreast. 
 "It won’t matter, Jan, if you don’t remember what you previously heard because most episodes are complete in themselves, with beginning and endings.”   
“Would it be all right if I interrupt to say something?” 
“Absolutely.  The point is not to read as many pages as possible but to feel free to communicate with each other when we are reminded of something in our own lives.  It would be great exercise for your brain, Jan.  For mine, too.  I’d like to spend a couple of hours this way three or four days a week.” 
“Wouldn’t that be boring for you?” 
“No, it would be exciting.”
“Okay,” Jan says agreeably.  Agreeably?  By Jove, I think we’ve got something. . . not a cure, of course, but a miraculous palliative, a step in the right direction.  Hey, we’ll take whatever we can get.  I see a ribbon of light on tomorrow’s horizon. . . just enough to read by.
 Several times a week I read to my sister for a couple of hours over the phone, letting her know she can interrupt any time for a comment, question, discussion, or a pee.  She laughs in the right places, gasps, empathizes, weeps.                                                                
Linda e-mailed me about a conversation with her mom.  Janeth was worrying about how birds would manage to find food with snow on the ground. I Googled “birds snow survive” and learned that nature takes good care of the healthy ones.  Chickadees have no trouble finding the literally thousands of tidbits they tucked away in advance of winter’s onset.  I looked forward to discussing with Jan the amazing memory contained in those tiny brains.
I had scarcely mentioned the word bird, let alone chickadee, when my sister cried out her unhappy recollection of the canary that died a few weeks after her eleventh birthday. 
 “No one told me he needed water as well as food,” she wept.  “He died of thirst!  I had nightmares for weeks  How was I supposed to know what the other container was for?  Was I supposed to intuit these things?” 
In hopes of distracting her as she continued to wail over the tragedy all those decades ago, I brought up my earlier phone conversation with Kathie.  I had told her that Janeth and I could have had splendid careers as editors.  The book I’m rereading now, and will soon be reading to Jan , is called Loving Frank.  The story is based on Frank Lloyd Wright’s scandalous elopement with a married woman, both leaving spouses and children behind.  It’s beautifully written, but I found errors in the use of the verb “to lie,” and two typos that should have been noted by the editor of Ballentine Books.
“You would have spotted them too, Jan, just as you spotted my glitch in the ending of Saving Dad.  Remember?  I wrote concerning Ed, "Do make it until you're ninety, if that's what you want. It's not what I'd want . . . "  Oh, how you laughed as you observed, "You mean it's not what you'd want for yourself."
She laughs again.  I tell her what I told Kathie today: "We're both good editors, but Janeth is best."
"Better," says Jan.

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