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...

A Caregiver's Question

"Wherefore art thou Romeo?" is Juliet's burning question to the Universe. She asks why Romeo, her beloved, is a Montague to her Capulet. Why must they be in a situation where they must hide their love from their respective feuding families? Why must her beloved Romeo be of the Montague house? Why is he, of all men, her beloved Romeo? Why could he not have come from a different family? Why Romeo at all?

Another Juliet (me, Juliet Archer) also asks a burning question of the Universe and has asked this question numerous times throughout the time she has known her (my) beloved Romeo. It is simply, "What?" and always comes after an instruction, an urging, an impulse from the Universe. It goes something like this:

The Universe (patiently but firmly): Click on this link (the one that I'm making pulsate, see it?) for this online dating service.

Juliet: What?

The Universe (patiently but firmly): Click on this link (the one that I'm making pulsate, see it?) for this online dating service.

Juliet: Okay.

This started the process that brought Romeo and I together. We met through this online dating service, even though I had no intention of using such a service. The Universe urged me to join.

Then, when Romeo and I decided to meet in person, here's what happened as I drove to the coffee shop where we arranged to join each other in a cup of tea:

The Universe (patiently but firmly): When you see him, you're going to kiss him.

Juliet: WHAT!!!????

The Universe (patiently but firmly): When you see him, you're going to kiss him.

Juliet: Okay.

This is completely out of my range of behavior with someone I've just met.

But I did...I gave him a little peck on the cheek. Maybe it awakened a pre-lifetime agreement in him, a sign or reminder that we were to be together. Maybe he was simply shocked (as I was) that I did such a thing. In any case, the rest, as they say, is history.

On the second day, Romeo asked me to marry him. Even though I thought, "What took you so long?" the Universe stepped in to ensure its desired outcome.

The Universe (patiently but firmly): Tell him, "Without a doubt in my mind."

Juliet: What?

The Universe (patiently but firmly): Tell him, "Without a doubt in my mind."

It was true, and I did. We were married less than four months later. We knew it was meant to be, and we each were happier than we'd ever been before.

Nine months later, Romeo was diagnosed with dementia, and I railed against the Universe.

Juliet to the Universe: What!!!???? Dementia!!!???? What!!!????

The Universe: (silence).

Juliet to the Universe: What? I can't hear you. What!!!????

The Universe: (silence).

It was gone. That guiding voice, the Universe, was gone.

Juliet to the Universe: You abandoned me. You don't say anything anymore. What's going on? What? What? What?

The Universe: (silence).

My "what" questions continue. What is this all about? What is the purpose of this? What were you thinking to put us together for this? What were we thinking to get together for this? What will happen to Romeo? What will happen to me? What in the world? What for? What happens next? What do we do with this? What reward do we get for doing this? What can we turn this into? What changes will we see in ourselves? What sort of silly reality is this?

Questions are plentiful. Answers are sparse. Yet, we plod along, Romeo and I. We continue each day. I remain open to hear answers, even though there have been only one or two. One day Romeo and I will know more. One day, my "what?" questions will cease. But until then, I know that the next time the Universe speaks to me, it may be my turn to remain silent.

Behind Blue Eyes, or Divine Dementia

The following essay is about an "aha" moment I had in November 2008 while taking care of Romeo. It appeared in the July/August 2009 issue of Viha Connection: The World of Osho and has been edited for this blog.

At the left is an interpretation of what I saw "Behind Blue Eyes." Painting by me.

* * * * * * * * * * * * * * * * *

Romeo is a sweet, sweet man. He is the kindest, gentlest, most loving person I have ever known. I would say that about him even if he weren't my husband. But there's something else you need to know about Romeo: he has dementia. Over the past three years we have witnessed a significant, progressive decline in Romeo's cognitive functions. It affects his thought processes, reasoning, memory, attention, language, and problem-solving capabilities, as well as his balance and motor skills. He requires frequent help and some supervision.

I could easily spend the entire day and evening helping Romeo, and I often have. While I am happy to be my husband's memory, his cook, waitress, driver, laundress, administrative assistant, psychologist, manicurist, IT specialist, physical therapist, nurse, social director, and pack mule, being his everything is not good for either of us. I simply cannot take care of all our needs, the both of us, and -- worse -- I can't seem to stop trying. My frustration level at times is over the top, and breakdowns happen too frequently for my comfort level.

One day Romeo's nearly constant requests for non-urgent help were getting to me. At his latest request, I paused, took a cleansing breath, and calmly looked into his eyes. Then it happened. I saw something I had never seen there before. In a nanosecond I took in his cinnamon-colored beard and hair, his reddish nose and cheeks, his blue eyes, but it wasn't Romeo looking back at me. Not at all.

What was looking back at me was the Divine, the indescribable Divine, saying hello and showing me that it -- that the DIVINE ITSELF -- is Romeo, that Romeo is the DIVINE ITSELF. Every cell in my body vibrated, jumped up and down in celebration of the yes-ness of it. Every molecule shouted excitedly, "Romeo is the Divine! Romeo is the Divine!" Yes, it is true that each one of us, everyone and everything in the world, is also that same Divine presence itself. I knew it. I experienced it. Without a doubt, it is true. Exhausted, I sat down and cried from the impact, and the totality, and the aha-ness of the moment.

Every day since then, I see, experience, and know in each of my cells that every request from Romeo -- every small or time-consuming request, every large request, every request he merely thinks -- is really a request from the Divine. Everything he asks is coming from the Divine. The Divine is asking me for help, and I am humbled and honored.

Later I realized that on a deep cellular level what I experienced was the Zen spirit that spiritual teacher Osho talked about in Zen: the path of paradox, Volume 1, Chapter 1. He said the Zen spirit:

transforms the ordinary into the extraordinary. It transforms the profane into the sacred. It drops the division between the world and the divine.

Indeed it does.

The Divine, the Ultimate, the Universe, God, Existence, revealed itself to me through Romeo that morning. And although there are still challenges in our daily lives, I am lighter in the knowing, in having experienced Romeo as the Divine. That revelation and its afterglow remain vivid, and every day I marvel at and am wildly grateful for this gift. Romeo is truly a sweet, sweet man. He is the kindest, gentlest, most loving person I have ever known, and divinely so.

Open Letter to the Universe from a Caregiver

Dear Universe,

On behalf of the people throughout the world who live with dementia and the people who require help with daily living, as well as their caregivers and loved ones, this request comes from the heart of our hearts, from the center of the center of our beings.

We have been entrusted with the important and difficult task of taking care of a loved one. We work long, hard, intense hours, and we do it because our loved one needs us to, wants us to. We do it because in one way or another, you asked us to. This is by far the most difficult thing many of us have ever done, will ever do.

So please, help us. Help us to see clearly. Help us to remember that our intention in taking care of our loved ones is to make sure they are the ones who are comfortable, that they are the ones who need attention, that they are the ones who need understanding. And help us to remember that we are the ones who also need to be taken care of, that we are the ones who must be rejuvenated, that we are the ones who must love ourselves more than anyone else. And help us to remember that unconditional love goes a long way in caring for our loved ones, as well as ourselves.

Help us to remain the solid rock foundations that we are, to hold our ground and be ruthless when advocating for our loved ones, to be adept at navigating the steps that make up our days. Help us to see that the disease itself is what makes our loved ones sometimes act in ways they would never have done normally. Help us to be forgiving of our loved ones, to be forgiving of ourselves, and to be forgiving of others who do not understand our plight or the plight of our loved ones. Help us to breathe deeply and to know we are breathing in your love, the love that permeates the Universe.

And as we go about our day, please wipe away our tears and vanquish our frustrations. Remind us of the honor we have in caring for our loved ones. Help us to know, to know within each cell of our bodies, that whenever we respond to a request from our loved ones, each time we help them tie a shoe or button a shirt or pick up a fork, help us to see that we are actually serving you, the Universe, that our loved ones are the Universe, just like we are the Universe. We are serving the Universe.

Finally, help us know that we would do it all over again in a heartbeat, from the heart of our hearts, from the center of the center of our beings. We would do it again.