Monday, January 5, 2015

Why I Read

Long ago, when I was four years old, my mother was ironing and watching TV. I was sitting on the floor cutting out photos from a magazine and asking my mother to read all the words on the pages. My mother kept telling me to watch TV, but I told her that I didn’t want to watch TV; I wanted to READ!

My poor mother grew so exasperated. What was she to do with this little girl that didn’t want to watch the new black and white TV set that so transfixed our family in 1955? How was she to teach me to read?

With a sigh, my mom sat beside me on the floor and showed me some words and pronounced them. That may have been my first moment of known joy. I quickly cut out words from the magazine and pasted them under the cut out photos, making my first story. Then, I went on to read words to my mother, stunning her, but mostly she was grateful that I caught on so quickly so that she could go back to ironing and watching her program.

A year later in kindergarten, I was incapable of taking a nap, being an insomniac even then. One day, I was whisper reading a story to a little girl lying next to me on our nap rugs. The teacher, a harridan called Miss Campbell, who never should have been allowed within a 100 miles of a child, with a nasty tone in her voice, asked me what I was doing. I told her I was reading a story to the girl next to me. Miss Campbell got a cruel smirk on her face and said, “Well, little Miss Smarty Pants, you are a liar; you can’t read. Kindergartners don’t read.” I told her my mom had taught me. Miss Campbell cackled like the Wicked Witch of the West and said, “Then, you get up here right now and read to the class. That will teach you to lie.”

So, I made my way to the front of the class, picked up a book, and read it perfectly. Instead of praise, Miss Campbell began frothing at the mouth, unable to keep her dragon steam inside. She marched me to the principal’s office and called my mother. When my mom got there, Miss Campbell and the principal admonished my mother for teaching me to read. My poor mom. She said, “All I did was show her a few words, and she did the rest. She was eager to read. Nothing would stop her.” Then, the teacher and principal told her what she’d done was wrong and that the school knew best about teaching, blah, blah, blah.

Fortunately for Miss Campbell and me, I got pneumonia in both lungs and was absent the entire second semester of kindergarten. My grandma came to help care for me and read to me for hours each day, as I had to lie in a mist tent and be still. She brought me the Greek myths and adventure stories, and had me read them to her. In hindsight, those were glorious months of reading, reading, reading and talking, all day long, about what we read.

Those few months came to define for me, from then until now, what an ideal relationship consists of—fellow readers discussing books and ideas together, sharing the joy and wonder of discovery.

I have no idea why or how I learned to read so young, why it was a need, a passion. I loved stories more than anything, and I wanted to write them as well as read them. Certainly, both are still a passion to this day. I cannot imagine a day without reading, without writing, without learning something new. Reading is as necessary to me as breathing.

Books have, quite simply, saved my life. They got me through a terrible childhood, and they’ve helped me deal with my middle son’s schizophrenia and my husband’s dementia. They have been my steady friends when my human friends seemed lost to me because I could not find (or thought I couldn’t) the right words to connect until a line from a book, play, or poem showed me the way. Books have kept me from despair, kept me sane, and are a steady source of joy.

I’ve pondered the reason for my desire to own many, many books as well as my reluctance to part with them, and in the last week or two, I think I’ve finally stumbled upon the answer—somewhere in each book is, I truly believe, a bit of truth that I want, nay need, to discover.

Most of my life, I have searched for answers, particularly the answer to why we are here and what we are supposed to do with our time. I clearly remember at age ten, walking the neighborhood streets on the 4th of July and wondering about the why of it all. I came home and eagerly asked my parents, but they told me to quit asking ridiculous questions.  I didn’t stop asking questions; I never have; I never will. I ask questions about anything and everything, and read far and wide, in my determination to attain answers or maybe just some wisdom. Nothing frustrates me more than not understanding why. Nothing.

My bed is surrounded by bookshelves; each room in our home has bookshelves; they are filled with poetry, drama, philosophy, politics, film, literature, myths and legends, and much, much more—thousands of volumes of treasure, some discovered, some yet to be discovered, and some to be rediscovered. And in each one a tiny piece of the answer I search for, or so I hope, which is why it physically hurts when I periodically cull my library at my children’s request because there is no more room. What if I missed a piece of the truth in a book that I donated?

So, whenever I have extra money, you guessed it, I buy more books, heedless of the lack of space, sure that one day, if I read widely and wisely, an answer, maybe the answer, will become clear to me. Until then, I shall happily keep searching, while wondering, sometimes, if the search itself might be the answer.

Take care,

Kate, aka Kathleen

Tuesday, May 6, 2014

Three Bittersweet Days

Imagine my surprise when I answered the phone last Wednesday, April 30, and Gordon's ICU nurse told me that my husband wanted me to visit him. I hesitated and stammered, "He wants what?" "He wants his wife, Katinka, to visit. Are you Katinka?" she asked.

Thus began the strangest three days of my life. For eighteen years, Gordon has had Frontotemporal Dementia. He hasn't cared at all about me or our children. The consequences of his illness have wreaked emotional and financial devastation upon us. The last thing I expected to hear is that Gordon wanted to see me. After all, no one gets better from Frontotemporal Dementia.

April was a difficult month. Gordon was in the ER twice, and each visit was a battle, though last week's was especially difficult. Gordon was agitated, combative, could not walk, initially could not talk, and did not know any of us. This happened out of the blue around 6:00 PM on Monday, April 28, Grant's birthday. It took both Gavin and Grant to get Gordon in the car and to the ER. Gordon arrived naked except for socks and a t-shirt that he kept trying to remove. He was oblivious to the fact that he was wearing no underwear. 

Monday night in the ER was a nightmare with Gordon struggling mightily. My sons and I had to hold down Gordon's arms for hours. Finally, Gordon was admitted to the ICU at two in the morning, where I signed a DNR, my first and, I hope, my last.

Tuesday was not much better. Gordon's hands were wrapped in gauzy boxing gloves to keep him from pulling out his IV's. He rarely made sense, and he was very unstable. However, the doctor said the worst was over, and we needed to make plans for after the hospital. I went from signing a DNR to planning Gordon's release in less than 15 hours. Way too much to process emotionally on only three hours of sleep.

Then came Wednesday and the nurse's phone call. When I got to the hospital, I was confronted with the man I married. Yes, he still had dementia and was not oriented to place nor time, believing we were in Ohio half of the time, and, yes, he was suffering from ICU psychosis and was sure it was raining in his room and that a song called "Sweet, Celeste" was playing non-stop. He showed the nurse, Grant, and me the "water damage" from the rain in the room, and he sang to me the song that he heard and wanted me to sing along. BUT in addition to all his normal dementia behaviours, this man was talkative, affectionate, sharing, joking, and asking about our children (he knew nothing about their education, jobs, or relationships). He was delighted by everything he heard. He was the man I married. Even his voice was the voice of the man I fell in love with, a kind, cheery, loving voice completely at odds with the cold, callous, cruel voice of the last eighteen years. What happened?

Then late in the afternoon, it seemed like Gordon was sundowning, slipping back into his Frontemporal Dementia self; however, when Grant arrived, he perked back up. He was the dad Grant had not seen since he was six years old. It was delightful, it was mystifying, it was terrifying. When we left that day, Gordon told me he loved me and that he was getting well for me because he didn't like me to worry. I cried all the way home.

Gordon was released on Thursday, May 1, and needed a walker to get around. He was SO happy to be home and so grateful for my help. He didn't hit my hands once, nor did he swear at me or insult me. Gordon told me that he wanted to get well enough to go to our sons' weddings this summer, and then he looked a bit uncertain, as if he had a fleeting awareness of the hell he, as a consequence of his dementia, has put us through, and said, "If they want me to attend." I assured him that they did, and he grinned happily.

Friday, Gordon maintained his cheery demeanor. He watched a movie with Grant and me, something he hadn't done in many years, and he discussed it with us. I risked telling Gordon about a chapter I wrote being included in a book about to be published, and he was delighted for me, just like he always was in our first sixteen years together, and decidedly the opposite of his insults of the last eighteen years. Just before going to bed, Gordon told me: "The kids are the most important things in the world, Katinka, after you." And then he smiled at me. I wrote it down after he said those words because I am terrible at remembering things verbatim, and I very much wanted for our children to have his words exactly as he said them.

Let me be clear--in every other way, Gordon still evidenced his dementia. He remained confused about time and place, could not follow complex sentences, was confused when confronted with new information, but in the one small part of his brain that dealt with the kids and me, he was his "real" self, and neither Grant nor I knew what to make of it. 

In my book Dueling With Dementia: Not The Love Story We Planned," I discuss echo moments, where the person with dementia seems to be his/her old self for a few moments; but that is all it ever is: a few moments (in my experience) or a few hours (anecdotal stories I've been told about). I have hated those moments and have appreciated that they have been very few. But what to make of three days of Gordon's personality reverting to the personality of the man I married and had children with? My greatest hope was that this change would last until after Gavin visited on Saturday and Amy on Sunday.

But my greatest hope was dashed. Saturday, before Gavin arrived, Gordon began to slip back into the cranky, mean, indifferent individual that he's been since Frontotemporal Dementia put in its unwanted appearance. The loud swearing is back as well as the animal noises, and Gordon is back to batting my hands away if I try to help. Also, he understands even less than before his hospital visit.

What caused these three days? While in them, I thought perhaps they were a gift that God was giving the kids and me before Gordon died--a perfect movie ending, right? After Gordon was once again his Frontotemporal Dementia self, I thought it was a cruel joke, but who or what could do something so heartbreakingly hurtful? The brain is a mysterious organ. I doubt I shall ever know what caused the three days.

Am I glad that the three days happened? On balance, yes, because I had begun to doubt my memories of the real Gordon, the man I loved, I married, and with whom I had children. And I am grateful that Grant got a glimpse of the dad he never really knew, being only six years old when Gordon began to change. But I am sad, too, because it highlighted how much the kids, Gordon, and I have lost due to Gordon's dementia. Our lives would have been so different if Gordon had stayed well. How? I don't know, but very different from what they are today because so much of what Amy, Gavin, Grant, and I are is a consequence of and a reaction to dealing with Gordon's dementia.

Overall, and now in hindsight, the three days will live in my memory as three bittersweet days, for which I am most grateful, but also very sad.

Take care,

Kate

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Monday, September 23, 2013

Kismet and the Square Dancing Trees

"I love those square dancing trees," I'd say each Sunday during the summers of 1976, 1977, 1978, 1979, and 1980, when my first husband and I would drive to the summer camp that he directed. I would point up into the mountains and comment on a pair of trees that looked exactly like they were square dancing and say with certainty, "One day, I am going to live there."

My first husband was not very communicative, usually ignoring my comments, but one time he said, "How would you ever find them? We'd never be able to afford it. You would hate living in the mountains." "No," I replied, "I will love it. It will be the happiest time of my life."

Fast forward to the summer of 1981. Gordon and I had been together a little more than six months. Once when we were going over the same highway that my first husband and I drove each summer, I showed Gordon the square dancing trees and told him that one day I was going to live there. He burst out laughing, a delighted laugh, but would not tell me why he was laughing.

Jumping ahead to 1983,  Gordon's ex-wife decided not to live in their mountain home, and she moved to the city with her boyfriend. That meant that Gordon and I were going to live in the mountain home because that is where Gordon's dad lived and where Gordon's former father-in-law lived, and we were now responsible for taking care of them along with our baby daughter Amy.

One day soon after we moved up on the mountain, a gloriously sunny fall day with the wind blowing, dramatic clouds scudding across the sky, and Amy giggling with delight from her seat on her daddy's shoulders, Gordon took me to the sheep's pasture for the first time and smiled. He gave me a big hug and then pointed. Right before my eyes were the square dancing trees. I was speechless, which made Gordon laugh out loud. He gave me a big hug and told me that he hadn't mentioned them before because he wasn't sure if we'd get to live on his mountain. When he knew we'd be living there, he wanted it to be a magical moment when he showed me the trees, and magical it most certainly was. 

When the children were young, I would show them the square dancing trees from the highway, and we were always thrilled and delighted to see our two trees dancing on our property.

This morning in the shower while fondly remembering my square dancing trees, I also remembered the day that Gordon had to cut one of the trees down because it was diseased. It was the tree that was the male partner, the one holding his hand up so the lady dancer could twirl her skirts. I had no presentiment about the future the day that tree was cut down, but, now, looking back, it seems to have been a harbinger of our future.

But one thing I know for certain--the words I said long ago to my first husband about living on the mountain: "I will love it. It will be the happiest time of my life" most definitely came true, only it came true with Gordon, my second husband, who just happened to own the square dancing trees. What were the odds? 'Twas kismet.

Take care,

Kate

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Wednesday, July 17, 2013

Why I Believe

I believe in God for two reasons. The first reason is simple--the world fairly bursts with the joy of creation. Everywhere I look in nature, I see evolution, yes, but I also see an effervescent delight and wonder at play. It feels to me as if someone or something had fun making the world, and I want to say "thank you." I felt this way as a child, and I still do. 

The other reason I believe in God keeps me believing when people confound me and the world no longer makes sense because I have no other explanation for what happened. It was a moment of clarity that still shines brightly in my mind.

In the summer of 1986, with one year left to complete my MA in English, Gordon came home one day, and he told me that I had to take the literature exam in November instead of waiting for April, as we had planned. He said he "knew" something was going to happen that would keep me from taking it in April. Whoa! How was I to cram all that studying into half the time originally planned while caring for two toddlers? Ah, inspiration struck. We wrote Uncle Bob, Gordon's brother, and asked him to come out for ten weeks. We told him we would pay him to play with and care for Amy and Gavin for eight hours a day so that I could study. He agreed. The only break I took during the day before Gordon got home from work was to read to Amy and Gavin before their naps. Reading to my children always took precedence. The rest of the time, I read, read, read for my exam.

Before the summer, I had spoken to my graduate advisor (now my friend), Elsie Leach, about what to study and how to study for the exam. She helped me write out a plan, emphasizing my strengths in dramatic literature. I felt confident until one night I woke up in a panic.

That night, I began to pray for guidance regarding what to study for my exams. I just knew something had changed from when Elsie and I had made my plan. She had retired, so I could not ask her. I just prayed.

One night, about two in the morning, I woke abruptly, as if someone had shaken me awake. I suddenly knew that I needed to read and study Chaucer, I needed to read other medieval texts, an area I had skipped entirely, except for "Sir Gawain and the Green Knight" because I love all things about King Arthur. I also knew that I needed to read the Critical Edition of several Norton novels. I wrote it all down, lest I forget upon waking in the morning. 

In the morning, I told Gordon that my prayer had been answered, and I now knew what I NEEDED to read, and it differed from what Elsie and I had planned, except for Shakespeare and Elizabethan drama; I somehow knew there was going to be a question on that too. Gordon not only scoffed at the notion, he got angry and said he did not want me wasting my time reading anything other than what was on Elsie's and my list. He was not an atheist; he was an agnostic, and like most people, myself included, wondered why, if there was a God, he would answer my particular prayer while there was so much suffering in the world. I had no answer.

Then began the first and only time I ever hid something from Gordon. I secretly began studying Chaucer, Medieval texts, and novels in the middle of the night with a flashlight so as not to awaken Amy, Gavin, or Gordon.

One night, Gordon woke up to pee and caught me. Instead of getting angry, though, Gordon was somewhat in awe of my conviction that I HAD to study these topics, and he became supportive.

The day before the exam, Gordon told me to read something fun and relaxing in order to calm myself. After he left for work and Uncle Bob took Amy and Gavin for a walk, I went to the novels section of my bookshelves and asked quite simply, "God, what should I read? I feel I'm missing something." In a moment, my hand reached out for James Dickey's Deliverance. Without hesitating, I sat down and read the book and the critical commentary about the book. When I finished reading, I knew I was ready for the exam the next morning, but I was a nervous wreck. What if I'd paid attention to a phantom, and I was going to fail?

The next morning, bright and early, and all of you who know me, know I do not do bright and early well, I entered the room, and there were maybe eight of us taking the exam. The professor proctoring the exam handed out the questions. My heart seized as I gasped. The format for the test was ALL WRONG. In previous semesters, each student was allowed to pick three essay questions out of nine to answer, but this test had three sections, and you HAD to answer one question from EACH section. I was sure I was sunk. 

The first section was three questions regarding Medieval Literature. Two questions I had no clue about, having never read the works that I was asked to discuss. The third question was about Chaucer's works, and I knew it cold.

The second section was Elizabethan drama with a question about Measure for Measure and All's Well That Ends Well along with a third play of your choice. I had written "A" papers on both plays, plus Measure for Measure is my favorite Shakespeare play, so I thought my friend Nils had written that question as a gift for me. Nope! I learned a few days later that a new professor, whom I did not know, had written that question.

Deep breath time--the third section was about novels. Two questions were on specific novels that I had never read. The third question asked me to write about three novels that used the the same form of a narrator in three different ways. I quickly wrote down the novels I had studied during the ten weeks, looking for three with the same form of narration. Only three novels fit, and Deliverance was the third one.

Tears rolled down my cheeks. A woman I did not know, who was sitting next to me, patted my shoulder and told me that I had next semester to take the exam. She, too, was shocked by the change in the exam format. I shook my head and said that wasn't why I was crying. I said that, for whatever reason, God had answered my prayer by letting me know what to study. I said I would never doubt his existence again. Understandably, the woman scooted her chair away from me and shot me fearful glances, no doubt believing I was a madwoman.

So, I wrote my three essays to the ONLY three questions I could answer. When the exam was over, I called Gordon and told him.  He was stunned and speechless. About a week later, a professor called to congratulate me. I had passed my literature exam for my masters with an "A".

So, that is why I believe. After such an experience, wouldn't you? How else to explain it? Oh, and that premonition Gordon had that something was going to happen? George, Gordon's 95 year old dad, who lived with us, fell and broke his hip in January, and from then until his death six months later in July, we had no time for anything but caring for George. Something to ponder, isn't it?

Take care,

Kate

P.S. I want to address two points that some people raise when you say you believe in God.

People often wonder why God allows human suffering in all its myriad forms, but I don't believe suffering is God's will. He gives us humans free will, and we use our free will to cause harm and suffering by thinking of and putting ourselves first and foremost. But if everyone--believers, atheists, agnostics--all of us lived by the words "love your neighbor as yourself," we would have nothing to blame God for because we would be fulfilling our basic, most important purpose for living, which is to take care of one another.

As for evolution, I think God and evolution go hand in hand. What's to quibble about?

Wednesday, July 10, 2013

A Day in the Life

For my fellow dementia caregivers--a band of dedicated wives, husbands, daughters, sons, sisters, brothers, and friends, who toil mostly behind the scenes with little credit or thanks, doing it out of a sense of rightness and, if truth be told, out of love. This blog post is for you. 

A day in the life of a dementia caregiver has three distinct components: you physically care for your loved one in whatever ways he or she needs, you anticipate, and you remember. Sounds simple, doesn't it? But it's really very challenging. 

Many people wonder what you do when you care for a loved one with dementia, and the answer will vary from caregiver to caregiver. Some of us are busy helping with bathing, feeding, and walking, but many of us, especially those of us dealing with behavior variant Frontotemporal Dementia (bvFTD), also spend time dealing with bizarre, unpleasant behaviors. Usually that means we are cleaning up messes after they have happened because your bvFTD loved one can think up things to do you cannot imagine. 

A few years back, my youngest son and I had to apologize to store employees because Gordon, my formerly courteous husband, would fly into a rage at helpful, unsuspecting employees and swear at them using the "F" word. Then, of course, there are the money problems. 

Families caring for a bvFTD loved one often have suffered devastating financial losses resulting from the loved one's poor executive function and choices, which means the caregiver has the added stress of figuring out how to keep a house over their heads and food on the table. Scary.

In addition to the physical caregiving, there's the anticipation factor. It's all about anticipating what's going to be needed next. It's about helping with minutiae, the hundreds of things you and I do each day without thinking about, on autopilot, but the person with dementia can no longer do without help. For instance, I loosen the jars and caps I think my husband might use that day to alleviate his frustration because his grip is now weak. I put items he might use in exactly the same spot so that he can find them. And I've recently begun to help him with dressing. He's tries to put shirts on upside down and gets all tangled up, and then sometimes he needs help with buttons. We caregivers never know what the next day will bring. We may have several calm days where we are lulled into a routine, and, then, bam, something new pops up. As you might suspect, we don't get much sleep, always half listening, waiting for the proverbial other shoe to drop.

Oh, and then there are the doors being left open. Whenever Gordon goes outside, he leaves the door open, and he often leaves it open when he comes back inside, or he closes it with a beloved pet outside and doesn't hear it scratching or whimpering or meowing to get inside. I'm often searching for my very frightened cat or letting in my very puzzled dog, neither of whom understands what has happened. Dementia is hard on pets too.

Perhaps the most difficult job of a dementia caregiver is being the rememberer, the caretaker for the memories of the time before your loved one developed dementia. Somehow, in the midst of irritation, frustration, anger, loneliness, despair, resentment, pain, and confusion, an array of unwanted emotions that wash over us when least expected, we have to keep enough perspective to not let the spouse, parent, child, or friend that we once deeply loved and cherished be lost to us and to the world. We have to tell the first part of our loved ones' stories in addition to the last part. As Gwydion says in Lloyd Alexander's The Black Cauldron, "so shall I honor Morgant for what he used to be." Replace Morgant's name with our loved ones' names and honer them for what they used to be. Our loved ones did not choose this dreadful disease, so we must find ways to remember and honor our loved ones' lives before they developed dementia.

Wow, all that in a dementia caregiver's day, and I didn't even touch on the driving issue and taking the keys away, or the fears and reality of abandonment by family and friends who choose to be in denial or are scared or don't want to be bothered. And how about getting reliable respite time for oneself? Ah, there's always more to write, isn't there?

Big hugs to all my fellow caregivers,

Kate

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