Wednesday, August 9, 2017


From Margo re Alzheimer's Disease
     My mother told me the World Trade Center had been attacked and I did not believe her. I thought that she was befuddled, confused. Then, to all our horror, we found out she was right.
     Then there was that poor lost woman, who had no obvious family and was all alone with her paranoia.  Most of the residents would dodge her when she approached because she would harangue whomever she got close to.  I was alternately scared of her & sorry for her. Finally, enough-is-enough, someone in the condominium management office located a daughter who relocated her to an Alzheimer’s facility where I am sure she is much happier.  
     Really, the hardest aspects of this disease are not the memory loss issues – sweetly forgetful people are generally loved and fussed over – but the associated paranoia and disagreeable behaviors that drive away the very people who would otherwise help.  Life is so very attitude, attitude, attitude.
     A year ago today I saw my sister for the first time in eight years. Robert, Janeth's table-mate, accepted my invitation to our celebratory lunch at the Ninety-Nine Restaurant, so now all I had to do was arrange for The Ride to transport us. What should have been a simple phone call took over half an hour. The reservationist and I did not understand each other from the get-go.
     “Now hold everything,” she said. “I need all your information before we start with the other passengers. Will they be coming to pick you up in Weymouth before they go to Advantage House?" " No, I’ll be there waiting with my sister and her friend." When she was satisfied that all t’s were crossed and i’s dotted, she asked me who would be the caregiver for my sister.
     “I will,” I said.
     “You can’t be two people,” she said.
     “But I am two people, I’m Janeth’s sister and her caregiver.”
     She repeated that I couldn’t be two people. This irritating ping-pong persiflage went on and on until I said I was on the verge of tears. I lied a little. I was on the verge of telling the bitch off.
     "Just a minute,” said my hassler.  Lisa came on the line—the supervisor, I suppose—and explained why I couldn’t be two people. As my sister’s caregiver, I would travel at no charge. Why didn’t the bitch tell me this? Was she hoping to save two dollars for The Ride’s service?
     “Now I’ll have to delete all your information from the form,” my hassler sighed. I didn’t report her to any resource except the one on this keyboard. Could be she needs the job as much as someone qualified.
     I called Jan at ten to tell her we’d be leaving at eleven.
     “What will I do about the rain? My jackets are all absorbent.”
     "The weatherman didn’t forecast rain."
     “But what if they’re wrong?”
     “Then bring the umbrella I gave you. “
     “It’s gone,” she says.
     "It’s been hanging on your doorknob for months.".
     “It’s not there now.”
     "I’ll come early and see if I can find it. If not, I’ll give you my rain bonnet."
      I look everywhere in her apartment, including in a closet to the left of her kitchenette that I’d never noticed before. It does look as if at last something has been stolen: my beloved umbrella decorated with a Renoir scene in blues and lavenders. [It was in my trunk.] It’s ten minutes of eleven.  We take the elevator to the first floor, and I ask the receptionist to call Robert. Joan tells his answering machine that Janeth and her sister are here.
     “Jan, you stay here and watch for the bus; I’ll go knock on Robert’s door.”
     He isn’t ready. There are several procedures he has to go through, such as locking a box with papers in it, then directing me to collect his ancient large leather bag on the floor of his closet, then turning off the lights. I tell him it’s beautiful out; a lightweight jacket will do. I have removed mine because my face feels broiled, the way it gets when I’m stressed.
     Robert rolls and I walk to the lobby, where Janeth says The Ride just got here. Joan tells us to have a good time, and we do. At least Robert and I do. I order the scrod and advise Jan to do the same, but she says anxiously that she usually has chicken.
     The chicken comes covered by a large mound of ziti and broccoli chopped so fine, my sister starts picking it off, assuming it’s parsley. I know she’s startled by the ziti, not having realized she was ordering a cousin of macaroni, which is the “white, gelatinous kind of food” she avoids. I give her half of my broccoli spears. She bravely nibbles a few pieces of ziti and says yes, she found some pieces of chicken underneath.
     Meanwhile Robert is tackling his grilled chicken tenders and relating stories about his life as a paraplegic. He does talk fast, as Janeth has said, and not loud enough for her to hear. Jan says she’s too stuffed for dessert, Robert says likewise, so I let Rhonda know I’m ready for the check. I ask Jan if she’d like some leftovers to take home with her.
     “Why would I do that?”
     “Because you’ve told me you often leave the table hungry. Wouldn’t it be nice to have something good in your freezer? I don’t think you cared for the ziti, but my fish was delicious. You can have it.” She says no thank you.
     The Ride’s driver arrives to collect us. After we sign in at Advantage House, we go to an empty room so I can show Robert photographs of Kathie with her Boston University team. He had forgotten she lived most of her life from a wheelchair. I also show him some “off-color” (as our mother would put it) cartoons featuring Santa Claus. He laughs at each one, while Jan requires interpretations.   "They’re pretty raw, aren’t they?" she says.  Our mother would concur..  She and Janeth didn’t like raw oysters, either.  Pity.
     When I was leaving Advantage House I gave Jan a manila envelope. “It’s a chapter from my friend Aura Kruger’s memoir.  It’s easy to read, and I think you’ll enjoy it.” 
     In the evening we discussed on the phone what Jan had read so far. She could see how 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 all-Black’s town rural poor.
     The next afternoon I was involved with my computer when the phone rang. It was my sister, who never calls me during the day unless there’s some kind of emergency. Well, there was.
    “I’ve come to the last page and it just stops and I don’t know what happens next!” Jan said plaintively. “They’re in a psychologist’s office with their son, and the shrink has just said that Aura's husband Leon was the one who should be in therapy, not Charles.”
     “I’ll get right back to you,” I said, realizing I must have given Janeth only half of the 52-page chapter, on the assumption she would be incapable of reading such a long excerpt.
     With Aura’s text on my screen, I asked Jan if she’d like me to bring the rest of the chapter next time I visit.  “Or. . . so you won’t have to wait to hear what happened that day, would you like me to read the next few pages to you?”
      Yes, she’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 began reading from the point where the chapter left off in the arrogant psychiatrist's office, concluding with: 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. I would pause whenever Aura amazed us with her gumption, so we could discuss our reactions. I stopped at the point where our heroine, barely five feet tall, befriended a hulking lad 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 totally on her photographic memory.  As the pages accumulated, her daughter Jo typed them into her computer.
     When I made my evening call at 8:00, I told my sister there were many exciting 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.
     "And Jan, it won’t matter if you don’t remember what you previously heard because most episodes are complete in themselves, with beginnings 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 talk with each other when we’re reminded of something in our own lives. It would be good exercise for our brains, Jan. I’d like to spend an hour this way three or four days a week."
     “Wouldn’t that be boring for you?”
     “No, it would be exciting.” .
     Linda sent me an e-mail about a phone call with her mom. Jan was worrying about how birds would manage to find food with snow on the ground.  I searched “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 in advance of winter’s onset. I looked forward to discussing with Jan the fantastic memories stored in those tiny brains
     No sooner than I mention the word bird, my sister cries out her recollection of the canary that died a few weeks after her eleventh birthday. Her shriek sounds like that of the horrified child she was when she found Trilby’s body lying in the bottom of his cage.
     "No one told me Trilby needed water as well as food!  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?”
     Intuit. The one and only word that fits the circumstances perfectly.  How was my sister able to develop such a rich vocabulary when she’d always had so little interest in reading?  
     In hopes of distracting Janeth as she continued to wail over the tragedy six decades ago, I brought up a book I’m rereading now, Loving Frank. The story is based on Frank Lloyd Wright’s scandalous elopement with a married woman, both leaving spouses and children behind.  It is beautifully written, but I found errors in the use of the verb `to lie,' and two typos that should have been noticed by the editors.
     “You would have spotted them too, Jan, just as you spotted my glitch near the end of Rescuing Dad.  Remember?  I’d said to 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 said, ‘You mean it’s not what you’d want for yourself.’
     Jan chortles again.  I tell her what I'll tell Kathie in tonight's phone call: we are both excellent editors, but my sister is best. 
     "Better," said Janeth.

January 17, 2008
      When I told Jan Aura Kruger named her daughter Jo after one of the sisters in Little Women, she said she had never read the book but she’d seen the movie.  Her favorite literature throughout her life was the Reader's Digest. It used to distress me that she limited her reading of good books to condensations. Now I figure there must have been a glitch in her brain that caused her to be overwhelmed when faced with a long novel or biography.
     She is open to having me continue reading aloud Aura's memoir, Forever Autumn.  I’m hoping the experiment will give our relationship a valuable new aspect.  If it works, she will no longer sit in her darkened room, "just thinking," trying to remember the names of all the aides and what they look like or what day and date it is. .
January 18, 2008
     I spent forty-five minutes of my visit with Janeth this morning, reading the first chapter of Aura's memoir.  She appeared to find it as engaging as I did. Indeed she was so interested that she called this afternoon, saying plaintively that the chapter I'd left with her had come to an abrupt end right in the middle; she wished she knew what happened next.  I said I would call her back in a few minutes.
     I began reading from the point where the chapter left off and caught her up on what happened with Aura and her husband and son Charles in the psychiatrist's office. Jan kept gasping at what my friend had to go through, and clearly wanted me to continue reading. The book hasn't been published, but it has garnered a lot of well-deserved interest because of the author's amazing accomplishments with black students in the Deep South.
     Jo Kruger had typed the pages of her mother's hand-written memoir as they piled up on her desk, a total of over five hundred; four years ago Aura asked me if I would edit the manuscript.  I was soon fascinated by the photographic memory from which she was able to extract every detail of every episode in her life, little knowing that someday this book would be a powerful panacea for Janeth, a year after I started the care-giving.
January 25, 2008
     I spent an emotional two hours reading to my sister, including the episode about Grandma Dora and Connie and kind-hearted Herb, whose wife was not equally kind-hearted.  When I reached the place where Grandma Dora makes sure Herb has left for good, then abandons the sing-song charade and speaks up in her strong, normal voice, I could hardly continue.  In fact I had to ask my sister to give me a moment so I could recover my voice. I never did, but I managed to choke out the words clearly enough so that Janeth understood what was going on.  I had inserted a reminder when I was editing that I wanted to share this scene with Kathie. Now, four years older, with a sister in assisted living because of Alzheimer's, the story was almost too poignant to bear.
From Forever Autumn:
     Herb was wonderful when it came to taking care of the two elderly women, Bert and Dora, neither of whom was his own mother. Unfortunately, his second wife, Kay, was annoyed with the time and effort required. She frequently suggested that I bring my mother to California to live in a nursing home in my neighborhood so Herb could be relieved of this burden. Herb assured me privately that he didn’t consider it a burden in the least, for which I was grateful. Despite that, I had asked Mom several times since Dad’s death if she would like to move to Los Angeles to be near me. She always turned me down, saying she preferred to stay in Hartford, her childhood home.
     When she first left Miami, I’d understood and accepted her rationale. Not only had she grown up in Hartford, but I was working while my sister was at home and would have more time to devote to her. Karyl and Herb were in a better position to give her the support and care she would need.
     All this had changed with my sister’s death and my brother-in-law’s remarriage. While Herb and I were visiting Mom in the nursing home, we asked her once again if she’d like to move to California to be near me. In the sing-song, childish voice she now used when addressing Herb and the nursing home staff, she said, “I don’t want to move. I like it here where I grew up. I’d be afraid to leave Hartford and everything I know. Please don’t make me move away.”
     After reassuring her she could stay as long as she liked, Herb kissed her good-bye and left to run some errands while I remained behind to visit. When I began to speak, she held up one hand to silence me and pointed to the door with her other hand. She listened for Herb’s footsteps to disappear down the hall and then, in the strong, controlled voice I’d heard her use all through the years, she said, “He’s gone, Aura. Now we can talk. I’m going to say this just once and I want you to pay attention. You have more than enough to do earning a living and watching out for your children. I am not going to move to Los Angeles and burden you with taking care of me as well. Herb can manage just fine, despite what Kay says.”
     As soon as she finished speaking, she went back to her childish sing-song and reiterated, “I want to stay in Hartford where I grew up. I’m scared to go away.” I laughed out loud when I realized what she was doing. She had everyone else convinced she was in her second childhood, unable to cope with change, when all the time she was putting on a show, saying what Herb needed to hear to ensure his assistance and protect me from taking on more than I could handle.

     After I'd read a good many pages from the California chapter, I came to a good stopping place about halfway through.  My sister didn't want me to stop until I explained a joke she hadn't caught about Portia. It was easy to "find Portia" with the Find function and to read again Aura's statement to her class.  “All over the country, students memorize the same speeches from Shakespeare's plays, such as Portia's `The quality of mercy."
     Then Congresswoman Maxine Waters paid a visit, wanting to see for herself this phenomenon she'd heard so much about, inner-city students being taught Shakespeare.  Finding the class involved with "The Merchant of Venice," Ms. Waters took center-stage and began reciting, "The quality of mercy. . . ."  Her audience burst out laughing.
     “How startled she must have been, Janeth, until Aura hastily apologized and asked her class to explain the joke.”
     This time my sister gets it--in fact she laughs frequently at the humor in Aura's book. She has started speaking almost as clearly as she did before her illness. Another life among the hundreds of others my classmate Aura Kruger has affected in a positive way.
     I look forward to sharing Sara Gruen’s Water for Elephants, although my plan is to include only the chapters about the protagonist’s old age in assisted living. All Jacob’s complaints about the food, lack of privacy, and other chronic miseries echo my sister’s.
     "Age is a terrible thief,” says Jacob. “Just when you think you’re getting the hang of life, it knocks your legs out from under you and stoops your back."   
     “Exactly!” says Janeth.
     I soon realize my sister will have no difficulty in following Jacob’s adventures as a young man. We submerge ourselves in Water for Elephants, a refreshing plunge from beginning to surprise ending.
     When we finish reading Gruen’s novel, Kathie suggests that I introduce the unpublished memoir she and I had co-written about her father, my former husband, Ed Malley.
     Several times a week I pick up the phone and read Rescuing Dad to my sister. She laughs when it’s appropriate, gasps, empathizes, and sorrows. We weep together over a flashback describing our mother's sudden death. The memoir ends with a paragraph concerning Ed and my mother-in-law.
     We used to joke about it when Ed’s mother had yet another fall in the nursing home. Like her son, she never broke anything, right up until her death at ninety-two. 
     “Mimi just bounces,” we’d laugh. Yes, I’m sorry about that. We laughed.
     Oh Edward, if you must fall, do keep on bouncing and do make it until you’re ninety, if that’s what you want. It’s not what I’d want, at least I don’t think it is, but I really don’t know yet, do I?
     I have read as far as `”Do make it until you’re ninety, if that’s what you want. It’s not what I’d want. . .” when Janeth’s burst of laughter interrupts me. “What’s so funny?”
     Her keen editor’s eye has noticed an amusing ambiguity: "You mean it’s not what you’d want for yourself."
     I acknowledge the grammatical glitch, but the fact is, the older I get, the more ninety-plus is what I want for myself. I need to know how the next president will handle the myriad problems facing him and our nation. I need to know if bridge partner Diane and I can still come in first once in a while. I need to know if I’ll be blessed with more great-grandchildren.
     My reading bond with Janeth continues to this day. I don’t have a crystal ball, but one thing is clear: Inevitably one of us will be left sorrowing when the other slips away to the far side of the rainbow. Until then,we are grateful for the magic carpet book-mobile that lifts our spirits and transports us far from daily cares.     

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