Sunday, September 11, 2016

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


Thursday, October 15, 2015

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

Tuesday, August 11, 2015

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

Tuesday, July 21, 2015

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

Monday, July 6, 2015

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