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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Tuesday, July 9, 2013

"Why Are the Seeds on Top of the Dirt?"

"Katinka, why are the seeds on top of the dirt?' asked Gordon with a puzzled expression in June 1983. We had been together as a couple for almost three years, and I was seven months pregnant with Amy. We were at the mountain ranch that would be our family home for the next twenty-one years, and we were planting a vegetable garden. Gordon had handed me a packet of seeds and said to follow the directions. Well, I did just that, followed the directions, which said "place seeds 4 inches apart." The look on Gordon's face was priceless. Then, he smiled, laughed, and hugged me close, and said, "I forgot you've never planted anything before. The seeds have to go in the dirt." Whereupon, he knelt beside me on the ground and showed me how to plant seeds. This is one of my favorite memories of Gordon and me together because Gordon did not tease me, put me down, or ridicule me. Instead, he was patient, kind, loving, and made me feel cherished.

What prompted this memory? Recently, I read an article about dementia caregiving, and one of the suggestions is to "Spend time remembering who the person with FTD was." I haven't done this much because I find it very painful, but the point was a good one. If you remember your loved one before FTD (frontotemporal dementia), remember what you loved about him or her, it will help you to be more patient and understanding during the sad, lonely, frustrating days, weeks, and years of caregiving.

Soon after I met Gordon, I sensed he was special. The beginning, however, was not auspicious. He would chitchat, and I dislike chitchat because I find it pointless, plus I'm not very good at it. One Saturday at the office in 1976, three of us were talking about politics because it was an election year, and I asked Gordon a question. He replied with some cliched comment, and I looked at him and said, "If you cannot give me a thoughtful answer based on intelligent ideas, then don't bother talking to me about politics." He laughed uproariously and went back to his office. A few moments later, Gordon came back to where I was and answered my question thoughtfully and fully. 
 
From that moment on, Gordon only talked about real things with me--poetry, politics, saving the world, and so much more. Until FTD changed him, Gordon and I had many, many fun, spirited, deep, intellectual, thoughtful, sparkling conversations that went on for hours. One rainy day in January 1985, during our three day honeymoon, when I was seven months pregnant with Gavin, while it poured with no let up all day, we spent more than six hours engrossed in our discussion about the book A Passage to India by E.M. Forster and the film based upon the book. The hours flew by; it was pure heaven. At dinner that evening, we considered that afternoon to be one of our finest ever.

I think two happy memories are enough for this first remembering exercise the article recommended that we dementia caregivers do. More than two memories might be overwhelming because of the stark contrast between then and now.

I often wonder if there is any part of the Gordon I loved and married and had children with left, or is his essence all gone. Mostly, I think it is gone, but every once in a while, months or years apart, Gordon will say or do something that echoes the past.

This morning, Gordon said, "Katinka, good morning. How are you today?" This may not sound remarkable to most of you, but it was the first time that Gordon has said it to me, when no one else was around (with visitors in our home, basic courtesies sometimes kick in--it's a puzzlement), since August 2002, eleven long years ago. For a moment, it took my breath away, then brought a tear, then a smile, making me remember our mornings so long ago that often began with Gordon awakening me with a kiss and a bit of poetry. What do you know? A third memory. 

Take care,

Kate

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