Monday, July 24, 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; 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 and 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 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,” she sighed. I didn’t report her to any resource except the one on this here 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.”
      I say 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 Honda’s 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 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 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. Mother would concur. She and Janeth didn’t like raw oysters, either.  Pity.
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 excellent 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 read aloud the manuscript of Aura's memoir, which my high school classmate had asked me to edit for her. I’m hoping the experiment will give my relationship with my sister a valuable new aspect. If it works, she will no longer sit in her darkened room, "just thinking," trying to remember the names of 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 Forever Autumn. She appeared to find it as engaging as I did. Indeed she was so interested that she called this afternoon, saying plaintively that the copy of 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 to her 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 petite, feisty friend had to go through, and clearly wanted me to continue.  
      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.  It was four years ago that 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 became her care-giver.
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 thoughtful. 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 happening. I had inserted a reminder during the editing that I wanted to share this episode 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 Aura’s memoir:
     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 fade out down the hall and then, in the strong, controlled voice I’d heard  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 got it--in fact she laughed 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 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 it, it knocks your legs out from under you and stoops your back.”
       “Exactly!” Janeth agrees.
       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 wept 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 duplicate bridge partner Diane and I can still come in first once in
awhile. 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. . 
From: Kathie Malley-Morrison
Sent: Monday, February 04, 2013
To: 'ted malley'; 'Tim Malley'
Subject: Aunt Janeth.
Just to let you know that our Aunt Janeth passed away today. Quite suddenly.
From: Barbara Malley
Sent: Tuesday, February 05, 2013
To: Margo Bendery
Subject: My sister
From: ted malley
Sent: Tuesday, February 05, 2013
Subject: Janeth
Hi Mom....
Sorry to hear about Janeth. I'm glad you were able to be close the last few years.
To: Kathie Malley-Morrison
February 16, 2013
I just found this picture of my sister with a friend whose name, Linda says, is Jill. She doesn't recall her last name. Anyway, here are these two lovely women.

Essay by Janeth's daughter Linda
      Janeth, Barbara's sister, is my mother. Dad passed away in November of 1974 when I was just 20, and I am now 58. Somewhere along the line, mom experienced what I call early onset Alzheimer's, or Dementia, and was fairly good at compensating. We didn't realize how grave her condition was until a few years ago; she went to assisted living from her apartment in Quincy.
      January 7, 2011 is the date Janeth came to live with me in Maine, moving her away from all that was familiar in Massachusetts. For the first 18 months my older daughter, Stephanie, undertook the role of caregiver so that I could continue to work. It was a good arrangement since Stephanie was unemployed at the time. When she informed me she wanted to return to a "normal" job it became evident that the only comfortable option for everyone involved was for me to leave my job as a mental health case manager and take over care-giving around the clock.
      We settled into a cozy routine, visited with friends, dined out, had visitors, etc. Mom was enjoying life in a home setting and seemed to be in good health despite the obvious. Most of her days were good, with very few delusional forays. Usually mom's infrequent bouts of delusion were the result of a dream and easily resolved with humor. Mom's laugh could be infectious; such a lovely sound.
      One day last summer mom was clearly anxious from the minute she woke. Thinking she had to pick up her husband (my dad) from work distracted her for much of the morning and she didn't eat her cereal and needed many more prompts to take her pills and drink her usual portions of juice and water. Mom became increasingly anxious, repeating that she needed to get dad home from work later that day. In my attempt to prevent her from reliving any grief over his passing, I made comments to the effect that dad had made other arrangements, he was all set, she needn't worry about his getting back home.  
       Mom wasn't buying any of it. She started asking me why I was so indifferent to my father's plight, to which I would reply again that he'd made other arrangements and distract her with a list of the day's tasks.
      It being a Wednesday, mom had her weekly appointment at the local hairdresser for a wash and set. Normally I drop her off, run some errands, and show up an hour later to learn she fell asleep under the hair dryer. This day when I returned, Lisa quizzically stated that mom had remained awake, looking all around her while under the dryer. As soon as she was situated in the van she irritably vocalized "You have been mean to me all day. Don't you care about your father? I NEED TO PICK HIM UP AND YOU ARE IGNORING ME!!!"
      I mentally questioned the wisdom of evading the truth but resolved to avoid once again telling her dad had died long ago. "Mom, I am hearing you say the you need to pick up dad, but he's made other plans now and you don't need to get him yourself." Then came a litany of accusations about how cruel, mean, indifferent, uncaring a daughter I was to let my dad just hang around the office when he could be home with us, and why was I keeping her from the car to drive him home? Using all the patience I could muster, I said, "He knows we go to the concert at the Gazebo on Wednesday nights and found another ride home. Remember, we're having a picnic at the Gazebo and listening to local bands?"
      You'd have to know my mother to understand "disbelieving look". But that woman had a look that could scare a ghost when she didn't believe a person and was disgusted beyond words. I was beginning to wonder why her delusion was carrying into the late afternoon, but let that thought go. Mom, my daughter Tiffany and I proceeded to the Gazebo for the 7 PM concert. Mom did not enjoy the music. Her sighs were louder than the band that night. When the concert ended, there was another accusing litany accompanied by "disbelieving looks" when I made my now feeble attempts to placate. I'm wondering if I'll be able to hold out. I'm wondering if I'll lose my patience.
      Okay. I've had eleven hours of this and I'm done. "Mom, do you really want to know what the situation is?" "I'VE BEEN WAITING ALL DAY, YES OF COURSE I WANT TO KNOW WHAT'S GOING ON!" "Well mom, your Alzheimer's is playing a dirty trick on you. Can I leave it at that?" "NO THAT DOESN'T TELL ME ANYTHING...WHERE IS YOUR FATHER/" "Mom, dad is where he's going to be. For eternity."
      Silence. Sobbing. Timidly at first, "You mean to tell me he's DEAD!?" Wailing, sobbing. "Oh it's just like he died today. Where was I when this happened?"
      We spent quite a while talking about things and mom accepted the situation at last. I learned my lesson and didn't shield her from the truth again, but there were few incidences after that one. Mom passed away unexpectedly at age 88 on February 4, 2013. Goodnight mom, dad, and Wally. I miss you all,
To Linda
     How well I knew that disbelieving look.  And how wrong I was to direct that look back at Janeth when she described the night she was assaulted.  The official conclusion at Advantage House was that she had inflicted her injuries on herself in the midst of a vivid dream -- but when I learned her papers had been scattered all over her apartment, I knew without question that my sister, a slave to those papers, would never have done such a thing.  My unkindest cut was accepting the notion that her injuries were self-inflicted.
     My message to Jan, residing in the heaven where she believed past injustices would be resolved:
You were so right; I was so wrong. Your ever-loving sister. . . .

No comments:

Post a Comment