Light in the Tunnel

Some days, by no means all, I wake up disappointed that I am still alive. It’s not that I want to be dead, because I do love life and all its wonders and delights, but I cannot see any light at the end of my particular tunnel, and I am so damn tired and worn out emotionally that some mornings I don’t want to get up and keep going through this tunnel anymore. I need light; I need hope; I need to know there’s an end I will live to see. I want to be happy to be alive, but mostly I am only resigned because I am a dementia caregiver for my spouse. Dementia caregiving is a life I would not wish for anyone, not even my worst enemy, if I had any enemies, which, come to think of it, I don’t know if I do, but it’s one of those things people say. When you are a caregiver for a spouse with dementia, you enter a kind of isolating hell you never knew existed. Everything is turned topsy-turvy, inside out, and upside down. You are in a strange land with no road map, no guideposts, and no translator.

Before I continue this post, which may be considered quite negative by some readers, and I suppose it is a pity party post in a way, I want to make clear that my children are the light of my life, my joy. Purely and simply, our love for one another is what keeps me going. In addition, I am immensely grateful that my youngest son and his wife allow me to live with them and, more importantly, not just live with them but make a home with them. Their love, good humor, and help with my husband on a daily basis make life bearable, for the most part.

But what about the least part? A good question, which I will attempt to address for your illumination and understanding.

When my middle son developed schizophrenia, the psychiatrists and psychologists that we saw tried to explain that life is all about perception. I struggled with this idea because I loved my son with all my heart and did everything to help him. Why couldn’t he see this? But he firmly believed that we, his family, including and eventually mostly I, his mother, were cursing him and ruining his life. Everything I said or did was twisted into an ugly misinterpretation/misperception, and all my loving words and actions were contorted into vile lies that became, through some unfixable chemical imbalance in his brain, my son’s reality. Our two realities, while sharing the same actual events, were diametrically opposed to one another. How could that be? My logical brain reeled. My heart broke. My hope, however, did not and does not waver. It may be a mother’s heart talking, but I believe one day my son’s brain will clear, and he will see things as they truly are, and feel once again my unwavering love for him.

Dementia, however, is different from schizophrenia. It is not the challenging, possibly impossible, matter of getting a chemical imbalance corrected; it is the brain atrophying, dying, never to revive, and taking with it your loved one’s reality as well as your own reality, which is intrinsically linked to your loved one’s. Whether it is forgetting with Alzheimer’s Dementia, hallucinations with Lewy Body Dementia, apathy and indifference with Frontotemporal Dementia, or a host of other brain changes that are part of the many existing dementias, the changes in our spouses plunge us caregivers into nightmarish existences, no two of which are the same.

But for all the day-to-day horrors of dementia caregiving that remarkably turn into routines—that’s how resilient we humans are—perhaps the worst thing to happen to a caregiver is to have a family member or friend disparage your situation, your caregiving, and, bottom line, your sacrifice because caregiving is a sacrifice. Your life is on hold indefinitely. So any comment that makes light of your caregiving is a slap in the face that stings and stings.

For reasons nobody, doctor nor layperson, understands, people with dementia are often able to rouse themselves and present normally for a few minutes. So, if you are having a family barbecue or wedding or birthday party, your spouse, whose dementia behaviors make your life difficult at best and a living hell at worst, may, for a few moments, be jovial, polite, and engaged, behaviors you never see in your day-to-day life with your demented spouse. Then, a family member or friend says something like, “He/she is doing so well. Caregiving can't be so difficult for someone so nice and easy to get along with,” implying that your description of your caregiving life is an exaggeration if not a flat out misrepresentation. You want to scream, and, for a moment, you feel like the living embodiment of Munch’s painting “The Scream.”

Why do people make such hurtful comments and implications? We caregivers often discuss this in support groups because we all encounter it. The word perception might be suggested here, but I flat-out  reject it, unless the different perception is an excuse. Often, I believe, people want to protect themselves from having to do something. Your caregiver’s life is so unimaginable that to imagine it would be to want to help, to alleviate, to comfort. But everyone is so busy, and genuine helping takes time away from weekends, holidays, and vacations, so friends and family may create a fictional alternative to your reality in order not to imagine it, and, as an extra benefit, not to feel guilt. 

Truly well meaning people, I have found, do not make glib comments. If in doubt about what to say, it's better to be silent and give a hug, thereby adding light to the tunnel.

Caregivers live a lonely life filled with anticipating the next minor problem or major disaster; it is a daily life of guaranteed uncertainty; but most of all, we live a life of loss. Memories, jokes, shared glances, shorthand comments, traditions, sitting companionably together, making toasts to the future, all the simple things that make up a marriage, a relationship, are gone. We go into our futures, beaming with pride at our children’s graduations, dancing with delight at their weddings, celebrating with pleasure their jobs, and holding with exquisite joy and awe our new grandchildren, alone, all alone. The irony that is dementia is that our spouse is not dead, but still very much alive.

Because our spouses are alive, our caregivers’ desire to share these celebratory family moments with our spouses is as natural as breathing, but when we do try to share a special moment with our living, breathing spouse and are met with complete indifference, it leaves us gasping for the breath of a reality that is no more. We are in a tunnel with no light nor end in sight.

And what we caregivers need in this seemingly endless tunnel of dementia caregiving is companionship and validation because we do not get either from our demented spouse. We long for and appreciate kind words, thoughtful expressions of caring, and hugs. We need to feel connected to the outside world. My daughter takes me to lunch each week, and this is a highlight of my week. It gives me something to look forward to.  My eldest son sends me NPR articles to read that keep me engaged with the world. My best friend John regularly gives me verbal pats on the back in emails. Students post things on Facebook for me. Each and every expression of kindness and caring helps and makes me smile.  It is some light in the darkness.

Some mornings, though, when I wish I hadn't woken up, all that gets me up to face a new day is remembering that once upon a time, my husband and I had a great love for one another that resulted in our children, my favorite people in the whole world, and that awareness gives me the energy to live through another day with hope that I will one day see the end of the tunnel.

Take care,

Kate

My Life So Far

At 6:55 AM tomorrow, I turn 64 years old. The song "When I'm 64" by the Beatles was released the summer I was 16. My paternal Grandpa loved to sing along with me to the hit songs on the car radio, and he always made wise or funny, and sometimes both, comments about the lyrics. Grandpa was 62 the year that song came out, and while I didn't think he was elderly, I certainly thought he was old. He asked me if I would still need him when he was 64, and I assured him that I would still love him and need him in two years. My turning 64 seemed a lifetime away then.

Now that "lifetime" has been lived, and I am turning 64, and I wonder if anyone still needs me. My children are grown, educated, employed, with spouses/partner, lives of their own, so the answer is probably no. But is "Will you still need me?" really the right question? Do I want to be "needed?" A better question might be, "Will you still want me?" Because I sincerely hope that my children and my friends will still "want" me when I turn 64 tomorrow.

Putting that question aside for the moment, what do I feel at 64? Is there something more I want to do before I die? A valid question because whatever else you are at age 64, you are on the downward slope of life's arc, life's journey, and death is the next really big milestone, which we all hope will give us the answer to why we made the journey in the first place.

So I am spending my last day of 63 pondering my life so far, and what I think is that it has been a damn fine life. I have experienced great love, a best friend, good friendships, rewarding work, and deep, abiding joy. I have read thought-provoking books, listened to music that made my heart soar, seen art that took my breath away, had conversations that lasted all night, and have never run out of curiosity about the world and everything that is in it. I love my children more than my life; I love my pets almost as much as my children; I love food and wine and laughter and Scotland, particularly Orkney.

Of course, there have been sorrows too--a husband with dementia, a son with schizophrenia, an unpleasant childhood, but, on balance, the positive has far outweighed the negative.

For me, one of the best things about being 64 is knowing who I am and not caring too much what anyone else thinks, except for my children. I care very much what they think.

Who am I? I am an introvert with no ability to chitchat, who prefers one-to-one interaction; I dislike large gatherings unless it is a gathering of like-minded individuals whom I know fairly well. I am an insomniac. I get lost everywhere. I have nightblindness. I worry too much, crossing imaginary bridges, trying to prepare for all eventualities. I prefer comfy clothes to stylish. I will never be slender again because I love to eat. I speak my mind, often before thinking, which sometimes gets me into trouble. I am honest and loyal and caring. I am passionately curious, and I am wise, though sometimes I feel like Cassandra. I delight in shared, meaningful glances, verbal shorthand, and in-jokes; basically, I love to share. I am a reader, a thinker, a film lover, a teacher, and a writer. I like my life to resemble a tapestry. I treasure my friends, and I am a rememberer. I believe in truth, love, and God, but I do not go nor belong to a church. I am a seeker, a cynic, and an optimist. I love life.

Hmm, so is there anything more that I want to do? Yes, lots of things, like meet and get to know my granddaughter Grace Marie in September as well as all my future grandchildren, write another book, write a play, go to Orkney and Shetland with my friend Lisa, maybe experience romance again, and laugh with my friends as we grow really old. However, I can honestly say that if I were to die soon, I would have no regrets, nothing major left undone. That's a pretty good way to feel when you turn 64, don't you agree?

Now, back to the question, "Will you still want me?" Only you can answer that, but I sincerely hope that the answer will be "yes" because I still want all of you.

Take care,

Kate, aka Kathleen, Kathy, and Mom

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 4^th 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

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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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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