When Doing Nothing is Doing Everything

From the first moment we hold our children on into eternity, we love our children unconditionally. We delight in them, we marvel at their uniqueness, we keep them safe, we hope the best for them, we trust them, we respect them, we emotionally support them, we weep with them, we laugh with them, we share their sorrows and share their joys, and our love provides them with a permanent place of acceptance and sanctuary in our hearts and in our homes. We are their emotional blankie or stuffie, pushed into the closet or back of the drawer, always ready to be pulled out again when needed. There is nothing that we will not do for our children unless something heartbreakingly inexplicable happens, and, all of a sudden, doing nothing becomes doing everything for them.

We parents know the truism that love is about letting go. That's how children grow and become their fullest, most complete selves. It is not easy for any of us parents to let go. We offer unsolicited advice, we badger them with questions, some of us helicopter parent, some of us don't, but whatever we do, we do it because we don't want our children to suffer all the pain and agony of growing up that we did. We want to protect them, but, ultimately, we always realize that we cannot. They must learn for themselves, while we stand by, wringing our hands and shaking our heads, feeling helpless and probably more agony than our children feel when things don't go as planned.

So we learn to let go AND to be silent, and, I'll wager that learning when and how to be silent is even harder than letting go. We think if we can just phrase our opinions the right way, our children might listen to us. It's SO difficult to be silent when your children seem to be making mistakes, though, in their eyes, they may not be mistakes at all. And most of us parents know the feeling of mystification that overwhelms us when our children choose a friend, a lover, or a spouse that makes no sense to us at all. What do they see in this or that person? All of a sudden, arranged marriages don't look too bad to us, though we would have roared in rebellion if our parents wanted to do that to us. We just want our children to be happy; we don't want them to get hurt. But utlimately, pleased or puzzled by their choices, we want their choices to work out for the best because we love them with all our hearts and only want good things for them. So it goes, generation after generation after generation.

Every year on my four children's birthdays, I recall the moment of their births with exquisite detail, love, and joy. I am well known for sharing their birth stories, year after year after year, and, for the most part, they are very patient with me. They are my babes, and I will always love them, no matter what, for always and always, each as much as the other, and I tell them I love them every chance I get.

However, today, my third child's 30th birthday, I cannot celebrate with him or tell him I love him. In 2004, when he was a teenager, he developed schizophrenia. His delusions and his paranoia keep him from being part of my life and part of our family's life. For years, I did everything I could to help him, but he refused to take his medications, and, to be honest, they did not work very well for him. I tried every way possible to convince him of my love for him, to show him that his delusions and paranoia were lying to him, to make him see truth, but schizophrenia is a formidable adversary, and it beat me. Everything I tried made things worse. 

 

But how can love make things worse? I struggled with this for years. My favorite book as a child was A Wrinkle in Time, in which Meg saves her brother Charles Wallace with her love, so I was sure that I could to the same with my son, but I couldn't, until one day, I realized my love could make it better for him but at a cost greater to myself than I ever thought I could pay--I could leave him alone and not contact him. 

So, today, on his 30th birthday, through a mist of tears, I am loving my son with all of my being by continuing to let him go, to stay silent, and to do nothing. As contradictory as this may seem, in the current situation, doing nothing is doing everything for him. 

A silent whisper into the universe: 

"Happy Birthday, Sweetheart, wherever you are. Love you always, Mom"

Take care,

Kate

Blather and Blame

Blather and blame. You can't go on the internet, listen to the radio, or watch TV without drowning in blather and blame. Every side of every question and problem facing our country and world is blathering nonsense and nincompoopery or blaming everyone and everything, the more ludicrous and ridiculous the better, except oneself for the problems. It's become a torrential waterfall of gibberish that threatens to drown us in a whirlpool of obfuscation.

Stop, people, stop. Nobody and no side is winning any of the battles waging around us. At present, we are ALL losing and heading towards ignominious death, most of us without a clue there is a real battle  going on for the continuity of mankind because we drift through our days thinking only of the small picture of our individual lives. We ignore, or have forgotten, that we all share this earth together, and while dire consequences may happen more slowly to those with more wealth, no amount of money or earthly goods will ultimately protect any of us, so the wealthy should be leading the way instead of foot dragging, hopefully out of the goodness of their hearts, but if not that, then because they do not want to lose what they have, because lose it they will. Nature doesn't care about mankind; it does what it does--erupt, quake, burn, or flood--with no regard for us humans. Only mankind cares, if anything does, about mankind.

If we are to fix mankind, and that's very questionable at this point, we have to stop what we've been doing, take a good look at ourselves and our policies, and say out loud, all together, "We are the problem." Then, we have to admit that our policies to this point have not worked, put our egos and profits aside, and look for new, humanitarian, and, dare I suggest, scientific ways to solve our problems. We can have no hidden agendas, with our only goal being to find workable, sensible solutions. We have to think outside the box, which may be difficult as our education systems have not promoted this kind of thinking recently (if ever). We need to think imaginatively and critically if we want the world to continue existing, let alone to improve. We cannot change the past, but we can learn from it and change our future. And, just a suggestion, we might want to let the young people lead us on this because we elders overall, and, yes, there are exceptions, haven't done so well by the earth and mankind. We've forgotten and desperately need to relearn the things we teach our infants and toddlers about caring for one another and for the earth. Then, we will figure out how to fix the world.

You can poo-poo my words all you want, but that won't change the truth of them. Truth is not relative nor something to be manipulated. Truth can guide us and save us, and the only way to find truth is to get rid of the ubiquitous blather and blame.

Love Isn't Always Enough, But

Yesterday, I had to surrender my Kiri cat to the SPCA. It broke my heart because I loved her, and she was fond of me. Sadly, though, I could not give her the home she needed. She needed to get outdoors, which we could not let her do because we live near a highway. She was unhappy being in the house all day. So, because I love her, I had to give her up. I hope she will get a good home.

Giving up Kiri reminded me, once again, that the oft expressed belief that "love is all we need" just isn't true. Sometimes, many times, love isn't enough by itself.

I learned this lesson early when I loved my mom, but I could not keep her from suicide. I could not stop my dad from beating her (and me). I could not get my relatives to listen, let alone believe, what was going on in our house. I got my 7th grade teacher involved, but this was way before domestic abuse hotlines or safe havens, so all it accomplished were fresh beatings from my dad. My mom pleaded with me to stop trying to make things better. So I did. And then she took matters into her own hands when she was 39, and I was 18. I needed more than love to help my mom--I needed people to believe me and help too.

The dating years also provided a major lesson in "love is not enough." I have loved three men in my life--one man did not love me back, and all my love could not make him feel the same way towards me. I was slow to learn this. Another man loved me as much as I loved him, but we were both scared in different ways of the depth of our feelings, so we took turns (how my perhaps unreliable memory of more than forty years ago remembers) sabotaging our romantic relationship. We, or at least I, needed courage in addition to love. Thankfully, we salvaged and nourished a lifetime friendship. He went on to have a great marriage with another woman, and I went on to have a great marriage with Gordon. But I learned from these two experiences that love, by itself, was not enough.

Ah, Gordon, the third time is the charm, if ever there was a time that love should have been enough, our marriage was definitely that time, and we lived many years in bliss. However, as most of you know from my blog, Gordon developed  behavioral variant Frontotemporal Dementia, and love is not enough to deal with that disease. You need fortitude to do that, and fortitude is a day by day exercise in doing, in commitment, in stick-to-it-tiveness. And I needed the help of my children because it was more than I could do alone. It broke my heart to realize that even in the most loving of marriages, love is not always enough.

But greater heartbreak, and the starkest realization that love is not enough, came with my middle son's schizophrenia. We parents who love our children more than ourselves will do anything to help them, anything.  And I did everything in my power, everything, never giving up until he was 18 years old and legally an adult, when I could do no more unless he wanted me to help, which he did not. For years, I believed that all the unconditional love that I and his brothers and his sister had given him, shown him, and poured into him for eighteen years would heal him, would clear his thinking, would comfort him, but no, love was not enough. We needed a cure, and, so far, there is none. The continual ache of missing my middle son never leaves my heart.

All of the above and more, such as not being allowed to take my grandpa home from the hospital, per his wishes, to die in his own home, have shown me that love by itself is not always enough, despite all the memes, greeting cards, and romantic movies that tell us it is. We often need other, often intangible, things too. 

 

But sometimes, miraculously, love is enough, like when our Jennie dog lived six years after the vet said she would die any day because her heart was severely damaged at birth. Every vet visit, he prepared the children and me for her imminent death, and every time I would tell the vet that our love for her would keep her alive. We loved and cared for Jennie with all our hearts--she was family. When she finally died, exactly the way the vet had predicted six years before, he was stunned she had lived so long. He and his fellow vets and staff (all of whom had seen her over the years) sent us a sympathy card that included a beautiful note about the power of our love for Jennie being instrumental in her living at all let alone six years.

 

Love is not always enough to fix everything, but love is the best part of ourselves that we have to offer others. So give love, give love, and then give more love we should and must because, while love is not always enough, sometimes love is just enough.

A Gift from Gracie

When I chose to watch Gracie,  rather than continue teaching, I knew that my choice was the best gift I could give to Gracie because she spends her weekdays with someone who loves her and whom she loves, and this gives some peace of mind to my son and daughter-in-law while they are at work. At the time I made my choice, I thought I was giving Gracie (and her parents) a gift, but it turns out Gracie gives gifts to me too.

Charles Dickens begins his novel A Tale of Two Cities with these words, "It was the best of times, it was the worst of times...it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us...," and these words pretty much sum up the dichotomy of my life nowadays because I am a caregiver for my toddler granddaughter, Gracie, and for my elderly husband, Gordon, who has dementia, both of whom are in diapers.

Gracie wakes up full of joy each day. She laughs and talks to her stuffed animals. When you enter her room, she greets you with a delightful smile and makes you feel like the most special person in the world. While I change her diaper, she "talks" to me, giggles, plays peek-a-boo, and while helping me change her out of her jammies  and into her play clothes, bestows a surprise kiss when I least expect it. Days spent with Gracie are the "best of times" because they are full of fun, love, and wonder; days spent with Gracie are full of "hope" because she has "everything before" her. 

If caring for Gracie is the "best of times," caring for Gordon is definitely the "worst of times." Gordon awakens with groans and moans and swear words. His Frontotemporal Dementia, very different from Alzheimer's, makes him apathetic, indifferent, and lacking in empathy. He does not acknowledge us very often, and usually only in relation to a want of his. He wears diapers too, but he won't let anyone help him, so he changes it himself, getting poop all over the bathroom. Grant and I clean up these messes, Grant with a resigned sense of humor, and I with disgust, loathing, and gagging. 

I marvel at the difference I feel in dealing with one diaper versus another, and it boils down to love. I love Gracie with all my heart, but I no longer love my husband. This may sound shocking or wrong, but what is left to love after twenty years of dealing with his worsening dementia, twenty years of cruelty, indifference, apathy, and self-absorption, twenty years during which I lost my husband, the father of my children, my home, and my financial security, twenty years of facing an abyss of meaninglessness and despair?

Part of the joy of caring for Gracie is her open heart. This child accepts and loves her humans, no matter what form we come in, and she, to my amazement, cares for Gordon. It is a wonder, truly and deeply, that I have pondered for many months. The man barely notices her, does nothing to help her or keep her safe, does not hold her, but she notices him and does her best to get him to notice her. She waves at him, claps at him, toddles in front of him and stops to make him stop walking. She chatters at him. And when he occasionally says, "Gracie Marie" or claps with her, she beams like she's grabbed the gold ring. This leads to some amusing situations, like when she was clapping at him, and Gordon began to clap his pee jug (fortunately empty) that he carries about. I thought at that moment, "You can not make this stuff up."

Gracie's acknowledgement of Gordon is one of Gracie's gifts to me. Her open-heartedness re-kindles in me some of the light that's gone out of my world. During Gordon's twenty years and counting of dementia, I have frequently lost hope, joy, and faith, each day looking darker than the day before, with no light at the end of the tunnel, a seemingly endless "worst of times." Now, though, Gracie brings her light to my dark tunnel when her life intersects with mine. She doesn't take away the darkness of Gordon's dementia, but she brings the light of love and hope, and she brings a new way of seeing things, a way of laughing at the horror instead of being overwhelmed by it. She sees with fresh eyes what my tired eyes were no longer capable of seeing--that is, she sees Gordon's humanity, and she reminds me of this each time she beams her smile at him.

Take care,

Kate

An Unexpected Room of My Own

"To contemplate the future or the past of the world, to dream over books...and let the line of thought dip deep into the stream" so that "one sees more intensely afterwards," you need a room of your own, says Virginia Woolf in her gem of a book, A Room of One's Own. Then, "the world seems bared of its covering and [you will have] an intenser life."

Ah, a room of my own--a longing, a hope, a dream--now come true in my son Grant's garage.

When our rental lease was up, Grant attempted to buy the home from the landlord, who had promised to sell it to Grant. It had four bedrooms and a big backyard, exactly what we needed to provide a home for a happy, married couple, their baby, Grant's mother (me), Grant's demented father, two dogs, and two cats. However, the landlord refused to sell when the time came, so Grant went on a hunt for a home to buy, so as not to be at the mercy of the whims of another landlord. He found a fixer-upper, which he and Leanne believed would work, and they bought it. Alas, the house was a three bedroom house. What were we to do?  Where were we all to sleep?

After walking around and around the house, I suggested that I sleep in the attached garage, which had a door opening into it from the family room. It was really the only possible room for me in the house. Fortunately, though not insulated (which matters little to me, as I am always hot, so our mildly cool winters won't bother me), the garage is sheet-rocked. Grant set about turning the garage into my bedroom. He painted the walls a lovely turquoise and bought a new garage door to replace the old, buckling, drafty one. He bought sliding windows for light and air to replace the single pane glass; he bought a door with a window for light to replace the solid, side door with holes in it; he bought carpet to cover the concrete floor; and he put fine screens over the vents to reduce the visits of spiders. Grant and Gavin installed the windows and new door, and Gavin bought and installed overhead track lighting to light the room for me.

After the room was painted and carpeted, I put up fourteen bookcases and filled them with books. My bed and nightstands are in an alcove I created with some of my bookcases, so I get to sleep surrounded by books, which is a most comforting way to sleep. My two dressers, file cabinet, and metal closet organizer are strategically placed to make the garage look like a bedroom. My rocking chair is near the bed for rocking Gracie, and the kitty litter is in the corner by the outside door. There is no way to hide the questionable attractiveness of the old furnace and new water heater, but I turned that section of the garage into another alcove that discreetly houses my camp toilet for easy, middle-of-the-night peeing. 

Now, instead of a garage, you see a cozy bedroom, where our cat Oreo and dog Mollie nap on my bed or doze on the carpet in the patch of sunlight made from the window of the outside door. Books beckon from every wall, and my room emanates an air of tranquility and the heart-warming truth that I belong, that I am home; for, truly, a home, SO much more than merely a room to sleep in, is what Grant and Leanne are giving me in this garage room in their home.

But my garage bedroom is more than being part of a home; it is the room that Virginia Woolf says that we need--a room of my own. A room for me to read, to write, to think; a room to rejoice in or cry about life's "little pictures," while simultaneously pondering life's "big picture;" a room to escape from the abyss of dementia as well as the cries of a newborn baby to the delights of poetry, the insights of plays, and the adventures of a good novel. And it is a room for me to experience the cognitive dissonance of almost crushing despair when life gets to be too much, while, at the same time, being felicitously, thankfully, blissfully consumed by an unquenchable, lifelong curiosity that makes me want to live forever. 

Virginia Woolf says we need to "escape a little from the common sitting-room and see human beings, not always in their relation to each other, but in relation to reality; and the sky, too, and the trees, or whatever it may be in themselves...for no human being should shut out the view; if we face the fact, for it is a fact, that there is no arm to cling to, but that we go alone, and that our relation is to the world of reality and not only to the world of men and women, then the opportunity will come...to live and write...poetry," and, I think Virginia Woolf would agree, bring into being any and all creative expressions.

So, now, at long last, I have a room of my own. In the past, whenever I contemplated a room of my own, I usually visualized a cabin in a wood or a cottage by a shore--very romantic notions, to be sure. But in the real world, a room of one's own is lovely wherever you have it. Mine happens to be, unexpectedly, in a garage, and I am most grateful.

Take care,

Kate, aka Kathy, aka Kathleen

Grammy is a Slayer of Rattlesnakes

Dear Munchkins, 

Did you know that your grammy is a slayer of rattlesnakes? Who'd have thought it? But a slayer of rattlesnakes is what I became because once you hold your newborn babes in your arms, you know you will do anything and everything to protect them. When I was having my children, your dads, we lived in the Santa Cruz Mountains on 55 acres, and it was very hot each summer, which meant that from April through October, we ran into many unwelcome rattlesnakes on our property.

What did I know about rattlesnakes before I moved onto our mountain? Almost nothing. I knew they were poisonous and that it was wise to stay away from them, but I had been raised on Disney movies, and I thought all animals were my friends, or could be if I treated them with kindness and respect. I didn't believe in killing any animal.

Alas, Disney does not prepare you for nature "red in tooth and claw."

My first introduction to a rattlesnake was from a distance. I was hugely pregnant with Amy, and it was SO hot that I had stripped down to my panties only. I was watching Gordon clear brush from around the house with a scythe. He pulled back a piece of wood, and out leapt a rattlesnake. I had no idea until that moment that a snake could leap, though I suppose a more accurate word would be spring. Well, it was one angry snake, and it went after Gordon with a vengeance. Gordon was running down the driveway pursued by this snake. When he got to a level spot, he swung his scythe wildly about, trying to fling the snake aside so that he could kill it. It was truly an epic battle. While I watched, I wondered if I was to be a widow before my Amy Angel was born. Finally, Gordon prevailed.

The next summer, I had my first interaction with a rattlesnake. I was carrying Amy across the deck to put her down for a nap when one of our cats acted peculiarly, so peculiarly that I stepped towards it, which made all the difference. When I stepped, I felt movement next to my shoe, looked down, and saw a rattlesnake coiling and rattling. I jumped back, horrified to know that if I had not stepped toward the cat, I would have stepped on the snake and been bitten. For years after, I only wore cowboy boots when outside.

Over the years, we had many near misses with rattlesnakes. We learned they could climb the steps to our deck because we saw one do it. We lost a cat to a rattlesnake, and a dog almost died, but she was a smart dog and stayed still for two weeks, while we gave her water. She lost all her fur, but she lived.

Then, one day, Hugh Evan ran up to tell me there was a rattlesnake on a hay bale. He had been jumping on the hay stacks when the snake started rattling. Gordon was at work, and I didn't dare leave that snake in the barn because the kids played in the barn. Amy stayed in the house to watch Hugh and Grant, who were quite young, and Gavin, who was six or seven, went with me. The rattlesnake was still on the bale of hay and rattling like mad. I had no moment to be afraid for myself. I picked up a pitchfork and pushed down hard, pinning the snake to the hay bale. I had to stand really close, but the pitchfork held him closer to his head, so while he could rattle furiously, he could not strike. Gavin got the only weapon at hand, which was a hoe. I made Gavin stay safely back, and, while pinning the snake with my left hand, with my right hand, I hacked and hacked at that rattlesnake until I got its head off, which I buried deep in the ground so that the dogs could not dig it up and be poisoned. Gavin and I tossed the carcass into the chicken coop because chickens think fresh rattlesnake is a tasty treat.

By the time we got back up to the house, we were late to meet Gordon for lunch, so the kids and I hopped into the van and headed down the mountain. When you have four young children, you don't have much time to think about yourself, so it was quite some time until it hit me that I had actually killed a rattlesnake to protect my children. Wow. I was quite proud of myself.

Only one other time did I kill rattlesnakes and that was when a neighbor called me and asked me to do it. Her toddler had started to walk barefoot out of the house, but the wire doormat seemed to be wiggling, so she picked up her son, slammed the door, and called me. I came to her place armed with a shovel because I don't use guns, and discovered several baby rattlesnakes tangled in her wire mat. I chopped up as many as I could, but one got away into the brush. I had warned our neighbor not to let her children go barefoot outside, but she thought I was exaggerating and being dramatic. After that day, her children wore shoes outside. 

Our family has many more rattlesnake stories, but no others where I slayed one. When I think back on these adventures of rattlesnake slaying, I recall Dallben's words in Lloyd Alexander's Prydain Chronicles, "For each of us comes a time when we must be more than what we are." Faced with protecting my children and a neighbor's children from poisonous rattlesnakes, I was able to harness my terror of the snakes, and become more than what I was before I had children, which is, bottom line, a mom who does anything and everything to keep her children safe.

Love you, Munchkins,

Grammy, aka Kate

Orange Juice, Cowboy Boots, and a Typewriter

Some days, when dementia caregiving seems like it is going on forever with no end in sight, I like to remember simple, lighthearted moments in Gordon's and my relationship before dementia raised its ugly head and took away everything we had together. Today, I am remembering orange juice, cowboy boots, and a typewriter.

Long ago, in the early days of our relationship, when Gordon would take me out to breakfast, I would ask him if it was okay to order orange juice for breakfast because, for me, orange juice, which I liked a lot, had always been an extravagance I could not afford, and I did not want to presume that Gordon had enough money to buy it for me. Gordon would always reply, "yes."  

Then, one morning in San Francisco, we were at breakfast, and I hesitantly, politely asked again, wishing I could forgo the allure of orange juice, but my will was too weak. Gordon leaned across the table, took my hands in his, looked deeply into my eyes, and said, "Katinka, I love you more than anything in the world, and all I want to do is take care of you for the rest of our days. We may not have a lot of money, but we will always have each other, and I promise you this, you can have orange juice everyday of your life if you want it, so please don't ask again." He grinned and kissed me.

In addition to orange juice, cowboy boots are another lighthearted moment I am remembering. For one of our early Christmases, Gordon got me a pair of cowboy boots. I stared at them in amazement, not quite sure how to put them on, or why I would ever wear them. Gordon explained that he hoped we would live on a ranch one day and have horses, which he had raised before his divorce. Horses were dear to Gordon's heart. He got me the boots, he said, because he wanted to share a part of himself with me that was a part of his essence, his truest self. It was such a lovely gift, his explanation being the loveliest part, and we did end up, for many years, on a ranch with horses, and I wore out that pair of boots and another pair completely before we had to give up the horses.

But the most special moment I am remembering today is the typewriter, and not just any typewriter, but an IBM Selectric II.  I love to write, always have, and when Gordon and I were first together, I was plunking away on the keys of a very inexpensive typewriter that had no correction feature, which meant that I had to retype a page if I made an error, or use white-out, which meant the whole world (a bit of hyperbole) knew when I'd made a mistake. Gordon saw and heard--expletives sometimes escaped my sweet, innocent lips--my frustration, and he asked what would make my life easier. I laughingly said, "An IBM Selectric II, but it costs a fortune, though you can get a perfectly good refurbished one for less money, but it is still pretty expensive." I told him not to worry because I could borrow my friend's IBM if necessary. Besides, we were both newly divorced and on a tight budget.

Imagine my surprise and delight, when on Christmas morn 1982, six weeks pregnant with Amy, I opened a cleverly camouflaged box that contained an IBM Selectric II. Gordon immediately apologized for getting me a refurbished one, but for me, in that moment, that typewriter shown brighter than all the stars in the sky. Why? Because the gift represented Gordon's belief in me--not just as his wife and the mother of our future children--but as the writer I knew myself to be. I cried and laughed, and we hugged and kissed, and I felt humbled and treasured at the same moment--I knew myself to be a woman deeply loved by the the man whom I deeply loved. 

That typewriter was a symbol of Gordon's belief in me, and I typed on it for many years until the Loma Prieta Earthquake tossed my bricks and boards bookshelves onto it and smashed it beyond fixing. Smashed though it was, I kept it until two years ago when we had to move to a rental house with very little room to spare. 

These days, Gordon no longer takes care of me. He has no interest in what I drink or wear or write on. But once he did, so I write these memories for my children to remind them of what their dad was once like, and I write them for my grandchildren so that they will know the man I, their grandmother, once loved, the man who talked me into having our children because he believed in me as a mother as much as he believed in me as a writer.

Take care,

Kate

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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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?

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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"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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Home Is Where You Belong

In his poem "Death of the Hired Man," Robert Frost says, "Home is the place where, when you have to go there, they have to take you in." But that makes home merely a place of obligation, and a home is SO much more than that. A home is a sanctuary where you are wanted and are cherished, a place where you belong.

Regular readers of my blog know that I did not have a home when I was a child. I lived in a house, but it was only a building, not a home. My grandparents' houses were places of sanctuary, where I felt safe, but they did not quite make it into the home category.

My first hint of a home came with my high school boyfriend's family. The Millers cared about me, and I cared about them. They even wanted me to talk at dinner, and I did not have to fear being hit or having my head slammed into the wall. That was a new experience for me, and I did not know how to speak freely. Jim, my boyfriend's dad, teasingly told me that I could not come to dinner again unless I talked, so I squeaked out something, enough to get invited many more times. During those dinners, I felt as if I belonged, and it was a heady experience.

My next taste of home came with Mom Woosley. Her son and I danced for awhile with a love that ultimately became a lifelong friendship, and Mom Woosley became the mother I never had. She loved me unconditionally, and I was always wanted and cherished in her home. I was the daughter she did not have, and while I knew that I belonged in her arms and her heart, I always knew I was a guest in her home, a welcome one, to be sure, but, nonetheless, a guest.

Another glimmer of home came with my roommates Cath and Irma. We three worked in a factory together in our early 20's, and somehow we found each other and became roommates. We lived together almost four years, and we formed a temporary family bond. We loved each other, and, for awhile, we belonged together in our homey apartment, but we were really just marking time until we each got married and went our separate ways, and we knew it.

My brief, first marriage was a mistake, but a mistake that I do not regret, for it led me to my life today. Sadly, my first husband and I did not have one moment when we felt at home with each other. But we figured this out quickly, realized we should not have married but just been friends, and parted amiably, so amiably that my future children called him Uncle Mitch.

Then in 1980, Gordon and I fell in love. The first weekend we went away together I felt something I had never felt before--I felt like I belonged with Gordon and he with me, felt like I had known him forever. Everything was easy; it was as if we were the missing puzzle piece in each other's life. Slowly but surely, we made a home together, a home where we could be ourselves at all times and feel we were wanted and cherished by each other, a home where we belonged.

Our love produced four very wanted and deeply cherished children, and our home was filled with love, joy, and laughter for many, many years. At long last, I had my home, we had our home, and I was grateful every minute for it; I never took it for granted. We six belonged together.

The fascinating thing about a home is that it can withstand the slings and arrows of the outside world because the love inside is armor for the home. It is when the slings and arrows come from the inside that a home can crumble because you cannot have armor on the inside to protect you because interior armor would stifle the vulnerability that is necessary for love to exist. We must be vulnerable to experience love in all its simplicity and glory. So, when a home is attacked from the inside and crumbles, it must be rebuilt on the back of broken dreams. That is what happened to our home when dementia and schizophrenia, both relentless and insidious foes, made their appearances. We four mentally well family members had to create a new kind of home, a home that had lost its trusting innocence in the power of love, but a home that still chose love as its core. We four made a new home, a good home, a home where we belonged, but a home tinged with memories of our lost home.

People say that home is where the heart is, but that's a bit too glib. What if your heart is in several places? Now that my children are grown and with partners, my heart is in different places (except for those joyous times when we are all together). Can I belong in three places, or will I always be a guest in their homes, as I was in Mom Woosley's home? Or worse, an interloper? And what of my missing son? Part of my heart is always with him. So where is my home now? Do I have one?

If home is where you belong, where is your home if you don't really belong anywhere anymore? When your spouse is gone, when your house that was your home is sold, when your children are grown and on their own, where is your home then? A question for the ages! It seems that I must broaden my perception of what a home is, or at least what mine shall be, and figure out a new way of belonging.

Take care,

Kate

"Greater Love Hath No Man"

Easter is a special day. It celebrates the purist love known to man, the love of one human choosing to die for another. I know there's debate about whether the story of Jesus rising from the dead is true, but there is no debate that I can find about whether Jesus chose to die for us, in fact, there's much historical evidence to support this, so Jesus' choice is what I want to focus on in today's Easter blog.

Stories in books and movies celebrate the person who chooses to die for family, friends, or strangers. Why do we celebrate this? Because we all wish we would do the same thing, but we know deep down inside that we probably won't. Self-preservation is strong in most of us, but self-preservation is not held up as the human ideal; rather, it is often represented as cowardice, and we scorn the person who grabs the life preserver out of another's hands.

Jesus said, "Greater love hath no man than this, that a man lay down his life for his friends." (John 15:13) and "Love your neighbor as yourself." (Mark 12:31). But the important point isn't that Jesus said the words, it is that he lived them. He did lay down his life for us, not knowing for sure that he would rise from the dead, and he loved us, his neighbors, more than he loved himself.

I find it telling that Jesus did not ask us to do as he did and love our neighbors more than ourselves. Perhaps it is because he knew that that is too much to ask from us; perhaps Jesus knew we would have a difficult enough time loving our neighbors at all, so asking us to love them as much as ourselves was the task he presented us with, what he wanted us to strive for, because he knew it was the one we could achieve.

Long ago, perhaps forty years ago or so, a friend and I were discussing Jesus' words and whether they had any value if Jesus was not, in fact, the son of God. I'll never forget my friends words, "Sure they do because how Jesus taught us to live is the best way to live. The world doesn't run well at all when people put themselves before others." Ah, a light bulb moment.

And so simple too. If we were all willing to die for one another, and we were to love others, friend or foe, acquaintance or stranger, similar or wildly different, as much as we love ourselves, the world would be, quite simply, a heaven on earth because no one would strive to be more than, to have more than another.

And maybe that's what Jesus was telling us before he died for us. The secret to making our world a heaven is in our own actions.  We act like Jesus, and we create a good world for everyone. We scorn his words, and we get the world we have today--war, poverty, greed, inequality, ugliness, despair, and hopelessness. 

Easter reminds us of our potential. It's not too late to change our ways; the choice is always ours. We just have to make the choice.

Happy Easter,

Kate