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...

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.

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:

Romeo Celebrates a Birthday in Dementiaville

Fly free and happy beyond birthdays and across forever, and we'll meet now and then when we wish, in the midst of the one celebration that never can end.
-- Richard Bach

Today is Romeo's birthday. He's 66. Last year we celebrated by going out to a special place for dinner. This year, we had a private party in a corner of the lounge at the nursing home. I brought raspberry cheesecake with white chocolate shavings on top -- his request. I sang "Happy Birthday" to him.

I also brought him gifts. He requested some new corduroy pants for the winter months. These I bought for him -- one pair olive green, the other dark tan, his favorite colors for pants. I wrapped them in purple tissue paper, secured with a simple, round, golden seal. I placed them in a dark green box and put them into a purple gift bag. It takes so little these days to make him happy. His childlike anticipation on being presented the gift made me want to give him more, wishing his birthday were every day. Seeing the joy on his face, in his eyes...priceless.

But wait, there was one more gift for him to open. I handed it to him, he took it, turned it over in his hands, guessed that it was a CD. Yes, it is. Open it. He tore away the tape, the paper. Indeed it's a CD, but he can't read who it is. Dementia has taken away his ability to see details like writing. I tell him it's a CD of the King's College Choir. At hearing this, the instant joy that registered in his face measured 9.3 on the Richter scale. He grinned like the Cheshire Cat and nearly jumped up and down in his wheelchair for the pleasure he felt.

King's College Choir, Cambridge. Romeo went to university at Cambridge. Specifically, he attended King's College. Zeroing in further, he loved King's College Choir so much that he went to church there. Which is odd, because Romeo is not a religious man. He went strictly for the music. He is a music kind of guy -- classical being his favorite. The Choir of King's College is one of the best choirs in the world, and he went every Sunday to hear them sing religious classics.

I must admit that even I, who am as religious as Romeo, enjoy hearing them. With every one of their songs, I fight an urge to cry out for the beauty of it. The Choir itself is an incarnation of the Divine. Add to the mix the setting -- the magnificent stained glass and the large fan vault ceiling of the King's College Chapel. It's a recipe that brings him back to the happy days of his youth, to his love affair with music.

So now Romeo can travel back to that time, back to his university days at King's, anytime he wants. And he does. And he is transported.

An Early Birthday Party in Dementiaville

Romeo's birthday is coming up soon. Tuesday, to be exact. But tonight, the Friday before the big day, some of our wonderful friends brought an early celebration dinner to the nursing home to honor Romeo and help usher in his 66th year. We reserved the private dining room and made it feel like home.

It was a sweet party. Romeo enjoyed the dinner, the desserts, his birthday cheesecake, the flowers and balloons and cards and presents (chocolate, of course!), the conversation and jokes, and the blessings of our friends.

But tonight I head to bed wondering what tomorrow will bring. Tomorrow, will Romeo remember anything of the party? Will he remember laughing and joking with friends? Will he remember what he ate at his party? Will he remember who was there? Will he remember the presents he received? Will he remember there was a party at all?