Before Christmas, Before Dementia

Our first Christmas Eve together, 2005, 8:00 p.m., nine months before Romeo was diagnosed with dementia.

Outside, it's quiet, dark, cold. Inside, Romeo and I sit in bed, me reading aloud, as was our custom by now. We had been married for six days, the afterglow of that day still shimmering inside of our hearts, as well as in the snow that blanketed the ground outside.

Suddenly, I am inspired to read something completely different than our usual fare of spiritual books. I wanted to share a childlike moment with Romeo, and he was up for it. I spring from the bed, run out to the bookshelves in the living room, select an oversized copy of Clement Clarke Moore's The Night Before Christmas, or A Visit of St. Nicholas. This particular book is an antique reproduction of an 1888 McLoughlin Brothers publication. The illustrations are by William Roger Snow and conjure up embedded memories, longings, perhaps, for simpler days, sweet memories, and the magic and wonder of unconditional love.

I read the poem to Romeo, and when we are done, we sit in silence for some time, with the words echoing off the walls, the ceiling. I turn out the light, we hunker down under the covers, and fall asleep in each other's arms, content, innocent of what was in store for us less than a year in our future.

The "Year Ago" Game, or the Changes Wrought By Dementia

Five years ago, Romeo and I hadn't met. He was recovering from open heart surgery. I was in the process of deciding to dump my then-boyfriend. I took to sitting in the chaise lounge on the veranda, Juliet dumping a suitor, watching the leaves rustle on the shade trees that nearly reached to my second story, looking out over the park, the open space, the golf course beyond, watching the clouds pass, the birds chasing after them.

Four years ago, Romeo and I had been married for six months. What a joke! Seemed more like 600 years -- in the sense that it felt as if we had always been together. That summer we took many walks and hikes. Our favorite places to walk were the Boulder Creek path and all over Rocky Mountain National Park. We could walk for hours, and we did, hand in hand.

Three years ago, Romeo had been officially diagnosed with dementia for about nine months. We walked still, up and down the Creek path, all over Rocky Mountain National Park, and many other places.

Two years ago, I had been laid off from my job for seven months. The lay-off was a gift. That summer Romeo and I walked, although Romeo's strength was declining. We didn't walk as far. So we ramped up the frequency of our second-most favorite activity: visiting bookstores and tea shops. Coffee shops, to be exact. Romeo is British, and you can't take the tea out of him. We spent anywhere from one to three hours at a tea shop, talking and reading. That year, I read 62 books. We don't know how many Romeo read because he didn't track them.

One year ago, Romeo was able to walk around the block once, twice on a "good" day. That year, last year, Romeo had trouble concentrating on what he was reading. We stayed at the tea shops for 40 minutes max because of it. We spent most evenings last summer at home sipping on herbal iced tea and sitting together in the glider on the veranda. We were Romeo and Juliet, on our private balcony, watching the leaves rustle on the shade trees that reached to our second story, looking out over the park, the open space, the golf course beyond, watching the clouds pass, the birds chasing after them.

So far this year -- right now -- the glider sits idle, empty. No one is sitting in it. Romeo has been living at the nursing home, away from our home, for nearly a month. He will never return to sit with me in the glider. He won't be present on our private Romeo and Juliet balcony. He won't be watching the leaves rustle on the shade trees that reach to our second story. He won't be looking out over the park, the open space, the golf course beyond. He won't be watching the clouds pass, the birds chasing after them.

Despite all that, our glider will still be there, even if Romeo isn't. And the chaise lounge? It will still be there, and maybe I'll take it up again. But the glider? Will I sit in our glider this summer? Maybe...maybe not. This, however, is certain: even if I do sit in that glider, our glider, it will always be empty. I miss my Romeo. I am Juliet, alone again, waiting for Romeo to appear on our balcony. Longing for Romeo to appear on our balcony.

Weeding and Reading in Dementiaville

There was a wall of books that occupied our living room. It was more of a library than a living room, really. We liked it that way. But then last autumn, after revamping a space that I now use as an art studio, we were hit by a decluttering bug.

Or shall I say that I, Juliet Archer, caught the decluttering bug. It spread through the entire condo...well, except for the three tall bookshelves in the study that I haven't touched yet. By the time the pesky virus had run its course, we had donated more than 600 books to our local library. In the library biz, this process of clearing out books that have outlived their usefulness is called "weeding." Yep, we probably could have opened a bookstore with all those weeded tomes.

And yep, Romeo and I share a love for books. The Robinson Crusoe from his childhood is on the shelf commiserating with my childhood copy of Honey Bunch: Just a Little Girl. His Treasure Island is the buddy for my The Trolley Car Family. But that's where the differences end. In our separate adulthoods, we read many of the same books. After we met and compared what we had and hadn't read, we each caught up to the other, reading the books that the other insisted we needed to. And we were right.

When we were a new couple, my days were occupied with working from home. Romeo, being the retired gentleman with time to spare, would venture into Boulder and hit the tea shops, library, and bookstores. He often would come home with a new book to share. Duh. One summer afternoon during our first year together, he arrived home, bubbling and gushing and nearly jumping up and down for joy. He was particularly excited about a new book he purchased, The Translucent Revolution: How People Just Like You Are Waking Up and Changing the World, by Arjuna Ardagh. Romeo was right. It's a great book.

Although many books have passed between us the entire time we've been together, two years later, it was my privilege to return the favor with another book by Arjuna Ardagh, Awakening Into Oneness: the Power of Blessing in the Evolution of Consciousness. "It's what we've been waiting for all our lives," I told him. "This is it. It's finally here. It's time." He gobbled up the book as quickly as I did and told me, "You're right." Duh. It launched us onto the spiritual path we've been on ever since. That path showed both of us the truth around Romeo's dementia. It has shown us how to meet it head on, how to live with it in our faces every day -- and now, every moment of every day -- and how to love every minute of it. That dementia hanging around Romeo simply IS. It's there. So we acknowledge it and what can come of it. We sit with it. We let it be. Because of this, the two of us have had numerous awakened moments. Romeo, my awakened love.

From the beginning of our life together, Romeo and I have read out loud to each other. His soft, British-accented voice would lull me to sleep each time he read. As it became more difficult for him to read aloud, I became the sole reader. I read children's books to him. Our favorites were Wynken, Blynken, and Nod and The Night Before Christmas. We read Love, Freedom, Aloneness: the Koan of Relationships and Being in Love: How to Love With Awareness and Relate Without Fear, by Osho; How to See Yourself As You Really Are, by His Holiness the Dalai Lama; and many more, too many more to mention.

For us, reading out loud is more than me reading and Romeo listening. It's an opportunity for us to discuss what we're reading. We stop whenever one of us wants to, when there's a question for the other -- what do you think about this point, or I don't think that's true and here's why, or ...but what about...? Our discussions sometimes go on for an hour or more. Funny how the dementia does not keep Romeo from these discussions. He is so very present, without any signs of a foggy brain. He is right there, in the thick of an intellectual or spiritual idea, dishing out his usual wise and witty views and takes on the topic. Romeo, my illuminated sage.

These days I choose books to read aloud to Romeo not only by subject matter but by how easy they are to read aloud. We're currently reading The Fifth Agreement: a Practical Guide to Self-Mastery, by Don Miguel Ruiz and Don Jose Ruiz. It was a Christmas gift from a friend. I started reading it to Romeo while he was in the hospital nearly three weeks ago, after the fall, as he suffered from a psychotic type of anxiety. The sound of my voice helped to soothe him, and I read to him even while he slept. Since he's now on the other side of that anxiety, we can once again talk about what we've read. And talk we do. We've always been able to talk to each other about everything, and we do. EVERYTHING. As it looks now, we should be able to finish reading the book in the next few days, barring any lengthy discussions.

Next up is a book of erotic myths and legends. We read a few stories from this book last winter, and we plan to read another story or two and then move on to another book. These erotica myths and legends are stories that go deep into passion, into meaningful love, but can still raise an eyebrow or two. They contain some of the unexpected but on a higher level and it's handled with more class and grace than what's usually touted as erotica. These stories are worthy of a Romeo and Juliet. And, if I may add, Romeo and I haven't had any discussions while reading these stories. It's just plain heart-thumping fun.

The past two nights, I've read to Romeo as he lies in bed, ready for a good night's sleep. I hold his hand and read. His eyes are closed, he looks comfy tucked into his bed, snug and warm. Peaceful, content. Free from fogginess, confusion, frustration. No real need to speak. Soon, he is breathing the slow, measured breath of sleep. Romeo, my enlightened angel.

I gently close the book, withdraw my hand from his, kiss him, pack up his dirty laundry for another midnight run of the washer and dryer, turn out the light, kiss him again, and leave the building. One of the last visitors to leave (again), I get in the car and point it to the east. Four minutes later, I'm home. Setting his laundry bag on top of the washing machine, I marvel at how I have been gifted with Romeo's awakened, illuminated, enlightened presence. And then I turn on the washing machine, add detergent and fabric softener, remove his dirty clothes from the laundry bag, check the pockets for who knows what, and toss the clothes into the washer.

Hmmm. Oh, boy. Do you see where this had led? I truly did not see this coming until now. Yes, I marvel at how I have been gifted with Romeo's awakened, illuminated, enlightened presence. Please excuse me, but it looks like the famous Zen saying is really, really true. No doubt about it. After enlightenment, the laundry.

With that, I'm off to bed.