All That's Left in Dementiaville

It's late afternoon as I enter Romeo's room. He's lying in bed, as usual, eyes closed, breathing the gentle breath of sleep.

I touch his hand, his arm.

"Hello, Romeo. It's me, your wife, Juliet."

His eyes remain closed, but they flutter and a smile illuminates his face.

"Oh," he whispers, "Juliet."

"Yes, sweetheart, I'm here."

After a long moment he utters one word, "kiss," and puckers his lips. I move closer and meet him at the confluence of physicality and spirituality.

"Again?" He smiles, and I gladly indulge the two of us again.

Romeo settles into a peaceful doze, and I hold his hand and sit back to watch him in sleep and to wonder. When Romeo's suffering (his anger and frustration at not being able to function as he did in the past, before he had dementia) fades into the background, and when his mind lets go and he experiences himself only as a content and happy living being, when who he really is looks out of his eyes even as they are closed and communicates affection, what is that?

When Romeo's physical discomfort is not present, when his mental landscape is clear and devoid of disturbing images, when he is not comparing or judging the situation he is in, when it appears that he is simply enjoying the unfolding of life, what is that? When all the unpleasantness is stripped away, what's left?

I have my own ideas about what life really is, but what are your ideas? Caregivers, perhaps more than many other people, are in a position to see life both devoid of everything and full of nothing. And when life is at this unusual balance, when the fulcrum of life is not what we expect, when it is inherently not visible, what is that? Is it acceptance? Is it patience? Is it simply being? Is it grace? Is it love? When life is stripped of everything, what's left? A kiss from divine grace?

Always Together in Dementiaville, or Not

Romeo has lived in the nursing home now for nearly eight months. It's so hard to digest that. On one level, it seems that we have always been apart. On another, it feels as if we've never been apart. It's a funny place to hang, not being together but being together. Not really together, but together. Not apart, not together.

At various times throughout this difficult eight months (has it really been that long?!), I've reminded Romeo that I'm always with him, even when I'm not there in the room with him. Usually I would tell him this when he was sad to see me go, when he didn't want me to leave, when his tears began. It was a way to remind him of our togetherness, of the strong bond that brought each into the other's life. It was a way to comfort him.

But what I didn't realize until recently is that this works the other way as well! Romeo is always with me, especially when I'm not in his room with him. And knowing this settles me, calms me.

From the moment we met, Romeo and I have felt like we have been together since before the beginning of time and that we'll be together forever, that there is no end to our being together. Even when we're apart. Yep, this is definitely so.

Whisper Of Angels

I was yours before the first morn broke
Before the sun that woke the earth
And I was yours before rain kissed the ground
Before the first dawn's sound was heard.

I'll be the whisper of angels
And I'll be the frost on your glass
And I'll be the shadows at twilight
I'll be your first, your last.

I'm the rush -- the fire in your veins
Across the desert plains I ride.
I'm the ache the sound that midnight makes
A streak of star across the sky.

I'll be the whisper of angels
And I'll be the frost on your glass
And I'll be the shadows at twilight
I'll be your first, your last.

Waves of Love in Dementiaville

"One time," Romeo said, "when you were pushing me down the hall in my wheelchair..."

He paused, looking at me as if I were the last person he expected to see.

"When you were pushing me down the hall in my wheelchair," he continued, "I felt something."

Once upon a time, I was able to anticipate what Romeo was going to say, sometimes even before he began his own thought about it. Now? Not so much. I nodded, encouraging him to continue.

Uncharacteristically, Romeo picked up his thread once again. "Some time ago, when you were pushing me down the hall in my wheelchair, I felt...I felt something between us. Something happening between us."

"Something was happening between us?"

"Yes, something was happening between us."

I waited as Romeo searched for words to describe that something.

"I felt a wave between us...a wave of love."

"Oh."

Romeo looked intensely into my eyes and repeated, "A wave, a real wave of love. It moved between us. Back and forth. From me to you, from you to me." He smiled and seemed overwhelmed by the existence of waves of love, by the thought of that particular wave of love that connected us.

I nodded and encouraged him to say more.

"There is nothing more to say." He lowered his head in silence, perhaps in gratitude, in awe. "It was beautiful." He cried softly, briefly. Looking up, he smiled at me and reached out to hold my hand.

Soul Mates in Dementiaville

People think a soul mate is your perfect fit, and that's what everyone wants. But a true soul mate is a mirror, the person who shows you everything that's holding you back, the person who brings you to your own attention so you can change your life. A true soul mate is probably the most important person you'll ever meet, because they tear down your walls and smack you awake. But to live with a soul mate forever? Nah, too painful. Soul mates, they come into your life just to reveal another layer of yourself to you, and then they leave.

-- Elizabeth Gilbert, in
Eat, Pray, Love

Romeo and I knew at first meeting that we were soul mates. We were thrilled to find each other, and we had no idea whatsoever what the Universe had in store for us. If we had known, we both would have probably run away as fast as possible, holding our hands to our face like the alien-looking person in Edvard Munch's painting The Scream.

As it happened, though, the Universe was subtle. It hooked us into each other under the veils of love, which, as everyone knows, render the lovers goo-goo ga-ga. (Here I am rolling my eyes up to the heavens.) We were blind. And not in a bad way. But when Romeo was diagnosed with dementia a short nine months after we were married, I had a tiff with the Universe. Well, it was more like a gigantic row, complete with wailing, crying, fit-throwing, and name-calling. I'm not proud of this. Well, maybe I am. It felt good to let out that emotion, and the Universe, in its infinite wisdom, can handle it. And it let me do it. It listened to me lovingly and patiently for nearly a year and a half.

"You two are soul mates!" the Universe screamed. "You and Romeo have been together many times before. In fact, we've tried to get you both to choose different partners this time around, but neither of you would listen. You wanted only each other. How in the blinking universe (present company excepted) are you supposed to evolve, how are you to help me evolve if you continue to choose the same partner?"

I never bought this line of logic. Of course not. I wanted to be with Romeo. And apparently, he wanted to be with me. That's all there is to it. We want what we want, and that's all that we want. So here we are. Me and Romeo, together. But our duo of togetherness soon became a trio of togetherness. Dementia is our uninvited partner.

Did the Universe say, "I'll show you! This will teach you to not do my bidding!"? "Here's your punishment for disobeying me." Ummmm, probably not. Nope, don't think the Universe works that way. In fact, I'm pretty sure that it wasn't the Universe at all that threw us this bitter-tasting bone. I'm fairly positive that it was Romeo and I, ourselves, the two of us and no one else, who engineered and willing, excitedly, boarded this dementia ride.

What were we thinking?

Our story isn't anywhere near being done yet, but I can tell you for certain that so far:

1. It's been a rough ride, tougher than anything I've done before. Anything.

2. The love Romeo and I have for each other, the connection, the bond, has held tight throughout our entire relationship.

3. Although I can't speak for any changes Romeo has experienced during our time together (and neither can he because of his dementia), I know without a doubt in my mind, without a doubt whatsoever, that I am not the same person I was before we met.

I have been pulled through the time Romeo and I have been together. I have not been pushed. I have been pulled through. Some unseen force stood in front of me, took my hand, and gently turned my gaze to the future. It let me see Romeo. It allowed me to help Romeo in whatever way I saw fit. It also kept me moving forward. It said, "Don't get stuck here. It would be easy to do, but your life is moving in another direction. Go with it. You can still help Romeo. And I'll help you. I'll take you to the future. And I'll allow you whatever time you need to be with Romeo, in whatever way you want. Romeo's life takes him elsewhere, and you cannot go with him, Juliet. He must go on his own. And you must go forward into your future on your own. I am there for Romeo. And I am there for you. Romeo travels down his path at his own pace. I am there with him, gently, slowly, pulling him through. You, too, Juliet, must travel forward at your own pace. Gently, slowly, I am pulling you through. Come with me."

And you know how the Universe always ultimately gets its way...

Singing in Dementiaville

Lately I've been singing to Romeo to calm him down and soothe him. His dementia is getting worse. He's more confused than usual, and he's also agitated. There's an aura of agitation around him, especially concentrated around his upper body and head.

From the moment Romeo and I met, I sensed the love that simply poured out of him. That love is a continuous flow, a river, that comes from within him and rushes gently over anyone near him. It penetrates their pores, entering the body and circulating inside then engulfing their aura before beginning the cycle again.

That love is missing now. It does not flow through Romeo's new confusion. In hope, I sing to him this mantra:

Love, Love in Dementiaville

This is one of Romeo's favorite chants, Shima Shima. Shima is a Hopi word meaning love. That's my Romeo. My Romeo is love. Pure, present love.

Something quite beautiful and incredible can happen when you chant along as this audio plays. Try it and see what happens for you.

Romance in Dementiaville

I have found the paradox,
that if you love until it hurts,
there can be no more hurt,
only more love.
-- Mother Teresa

Romeo says that he thinks about me often during the day. Of course, I think of him throughout my day as well. But it feels sooooo good to hear him say that he thinks about how soft my skin is, how he loves to gaze into my eyes, how he loves the sound of my voice as I read aloud to him, how he loves my feminine energy and openness and vulnerability.

That Romeo can and does think of me when I'm not with him is a juicy raspberry to dementia. He remembers something, someone, me! He is clear about our love. He is secure in it. He is present in it.

On the flip side, we have both been hurt by our love. It hurts that Romeo is in a nursing home, without me. It hurts that I am out in the world, without him. He is afraid of what the dementia of his future will do to him. I am, too.

Because we love, Romeo and I, we hurt. Because we hurt, and because that hurt becomes so painful that it's hard to bear, it transforms into love. Romeo and I give each other love, we receive one another's love, and we both magnify the love we feel. We breathe it in and then magnify it out into the world. We stand on firm, fertile ground, rooted deeply into our beings, and we love each other, we love hurt, we love love. Not to love is unthinkable, painful. Being love is all we can do, and it is enough. More than enough. We cannot bear too much hurt, but there is no such thing as too much love.

Attached in Dementiaville

There are four questions of value in life...
What is sacred?
Of what is the spirit made?
What is worth living for, and what is worth dying for?
The answer to each is the same.
Only love.
-- Johnny Depp
as Don Juan deMarco (1995)

When Romeo and I first met, we could hardly stand to be away from each other. And by "away," I mean that we didn't even like to part for the few seconds it took to go to opposite sides of the car to get in. Really. I couldn't believe it myself at the time.

But these were true feelings, the feeling to be attached at all times, that came from deep within each of us. Why we felt like this was a mystery to us both. Still, we followed our instincts and held hands wherever we went. Grocery shopping, running errands, sightseeing, taking walks. We were attached in a way neither of us had ever been attached before. This was bonding in an extremely healthy way.

Romeo and I were living love, we WERE love, and we seemed to magnify those loving feelings wherever we were without trying. Strangers on the street would see us, and they would nod and smile hugely, walking away with a spring in their step that wasn't there a few seconds ago. People would stop us and comment about how much in love we seemed to be. People would ask how long we had been married. I told the truth at the time "Six months." Secretly, I was thinking that it was more like 600 years, in the good sense.

Now, five years later, much has changed. We don't go grocery shopping together, we don't run errands together, we don't go sightseeing together. The only walks we take together are when I get Romeo up for short jaunts around the nursing home or outside of it on the deck. People still stop us and comment about how much in love we seem to be. People still ask how long we've been married. Now I reply, "Almost five years." And I still secretly think that it's more like 600 years, in the good sense.

The Caregiver's Strategy - The Second Part

Without humor in my tool belt, a new strategy to lift Romeo's moods has come forward. It's love. Rather, it's finding a crack in his frame of mind to insert love. It's searching for an opening where I can hold his hand, get his attention so he'll look at me, and talk about love and who he really is, what our relationship really is.

The crack where I can enter his space, his mind, is a barely perceptible instant when he lets go of his pain and sorrow. These cracks are rare, and when I find one, I must act immediately. I must slip him into his body, into his present, and love him and tell him about himself, about us. This, then, connects him to the truth and quiets and soothes him.

I spot a crack. "Romeo," I say, "I love you with my whole being." He doesn't look at me. He often doesn't look at me. "Romeo, would you please look at me?"

"I can't."

Me, gently: "Why not? Can you tell me why not?"

He begins to weep softly. "Because...because...it hurts me and I cry."

"Why does it hurt you, my love, why do you cry?"

"Because I love you so much and we've only been married a short time. We've had so little time together."

It's true. We met five years ago, in the afternoon of August 27, 2005. He asked me to marry him the next evening. And I thought to myself, "What took you so long?" Our bond is strong. To me, it feels like we've always been together -- for 5,000 years, not this mere five years of physical time.

"Oh, yes, I see, Romeo. I'm not sure if I believe in reincarnation; even so, do you know how much we have been together in past lives? A lot. They're probably trying to get us to stay away from each other more, to experience being with others throughout our lifetimes."

I have his attention, and he locks his gaze with mine, his blue eyes looking through mine, searching deeply, wanting more.

"Romeo, you are so much more."

He's lapping it up, poised to hear what else I'll say.

"Yes, you have dementia. Yes, you are confined to living in a nursing home."

The crack is still open.

"And most of you is living elsewhere."

He has a bolt of realization. The truth is here.

I nod and tell him, "Yes, yes! Most of your being, your soul, your essence, doesn't live here. It never did. Even before you had dementia, only a tiny part of your awareness was focused here."

He is still holding my gaze. I go on because there is more.

"In fact, you aren't even you. Do you know who you are, who any of us really are?"

Yes, he knows, he nods.

"You, me, all of us. We are It. We are the One. We are the Universe. We are everyone and everything. We are love."

He reaches out, wanting me to come nearer, to hug me. This is a convoluted affair, trying to embrace, with Romeo in his wheelchair.

"Can you think of that -- who you really are -- sometimes?"

"Sometimes, yes" he says, tears dripping from his eyes. These are not tears of sadness, but tears of realization, of hope, joy, comfort, peace.

"Good. Try to go with it when you can remember. When you remember, think of yourself, think of how your consciousness is free and unemcumbered by your physical body. You don't really need it during times like these. You don't need to feel separated from me, because we aren't...not really."

"Yes, I know this," he says with the conviction of one who truly knows.

I smile and ask if I can read to him. With his consent, I read one of Drew Dellinger's poems, Hymn to the Sacred Body of the Universe. Afterwards, Romeo rests in contentment, peace, bliss. Afterwards, I am exhausted and drained.

Here is Drew:

The Caregiver's Strategy - The First Part

For about two years, I took on the mission of making Romeo laugh. He was sad often. I became his personal jester. I clowned around with him, made funny faces, said unexpected things, told him silly jokes (which he usually didn't get), and got physical with him -- I'd pretend I was a roller derby queen and "shove" him out of the way; I'd tell him silly stories about passersby; at home, I'd hop onto his lap, straddling him while reciting part of the witches' cauldron scene from Shakespeare's Macbeth in the witchiest voice I could call forth:

Double, double toil and trouble;
Fire, burn; and, cauldron, bubble.
Filet of a fenny snake,
In the cauldron boil and bake;
Eye of newt, and toe of frog,
Wool of bat, and tongue of dog,
Adder's fork, and blind-worm's sting,
Lizard's leg, and owlet's wing,--
For a charm of powerful trouble,
Like a hell-broth boil and bubble.
Double, double toil and trouble;
Fire, burn; and, cauldron, bubble.

And all the while I would tickle him and mess with him -- pretending to pluck out his eyes (even though he isn't a newt), to pop a lizard's leg in my mouth, to stir the hell-broth -- even offering to make it for dinner that evening. He would laugh at all of it. Mission accomplished.

But, being the evil witch that I am, this was simply not enough for me. I had to go farther. So I performed my famous witch cackle until he cracked up, which didn't take long. My witch laugh is better than anything I've heard on the internet (yep, I promise to upload it somewhere at some point). My witch cackle pushed him over the top. He would laugh hard and push me away so he could hold his stomach in laughter. I would fall off the couch and roll around on the floor. Who knows what the neighbors thought? We didn't care.

Romeo was now out of his funk, and this lighter mood of his would stick until the next day. It was hard work in those days, keeping him happy.

These techniques don't work any longer. Romeo's moods go deeper these days. Humor no longer lifts him. What to do now?

Stay tuned for the rest of the story in The Caregiver's Strategy - The Second Part.

A Call From Romeo in Dementiaville

My cell phone rang, and I didn't recognize the number on the caller ID. "Hello?"

"I love you."

"Romeo?"

"Yes...I love you." His voice broke, as if he were about to cry. I was concerned.

"Are you okay?"

"Yes...I love you."

"Oh, my sweet man."

"And I want to tell you something else. I want to tell you, Juliet, that I love you inside and out." Another break in his voice, caught up with emotion. "Where are you?"

"I'm waiting for the SUV. It's in for an oil change."

"Oh."

"I'm coming to see you after it's done."

"Oh. The reason why I said I love you inside and out is because..."

More cracks in his voice, emotions seeping through, and now my eyes wet.

"...you know that I love who you are as a person, the inner you."

"Yes."

"But I also want you to know that you are beautiful on the outside, too. I love you."

Tears from both of us now.

"Romeo," I said while laughing and crying at the same time, "do you think we'll ever be able to tell each other how much we love the other without crying?"

"No." Laughter and tears from him now. "I'll see you in a little while, then?"

"Yes, Romeo. In a little while. Until then, I love you."

Laughter now from the both of us. Laughter and love, from the both of us, to each other.

The Love Dream of a Dementia Patient

Romeo had a "waking" dream, as he does from time to time. "It was about the stages of love," he said. "It was the most beautiful thing I've ever seen."

"Tell me about the dream," I said.

"I don't remember it."

"Tell me anything you remember, any small detail."

"It was beautiful."

"Yes?"

"It was about love in the spirit realm."

"Ah, not romantic love?"

"No."

"Agape?"

"Yes. It was beautiful. It's really all there is, you know, this love."

Romeo drifted off with his sketchy yet potent memories of the beauty of spiritual love, leaving me holding his hand and looking out to the darkening evening sky, grateful for his insights, his love, and the presence of his spirit. Always present with me, his spirit that does not have dementia.

"Agape," he said, "is more beautiful than romantic love. It prevails over everything."

Romeo is present whenever he speaks of spiritual matters. He's always right there, right here, on the topic. The dementia hasn't taken that from him. However, if the day ever comes when Romeo can't speak of such things, I know that his love, his spirit, which has marinated in love since the beginning of time, still remains. He's told me so, and I believe him.