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?

Gazing in Dementiaville

When we hold the gaze of another,
we hold and cradle his or her soul.
-- Will Johnson

When Romeo and I first met, we would sit on the couch for hours, facing each other, gazing into each other's eyes. We gazed until one or both of us started to cry, and after we became quiet, we began the gaze again.

Why we did this, neither of us really knew. We simply did what our intuitions told us. We were drawn to gaze into each other's eyes, so that's what we did. It seemed to be a way for us to connect even more deeply with each other. Something magical happened when we connected eye-to-eye for long periods of time. We exchanged some sort of mystery of our souls when we held each other's gaze.

It's not so much that we saw the other's longing, desire, hope, pain, depth -- although we certainly did. It was more that we saw the other in totality. Our gazing seemed to take each beyond the other. (See Behind Blue Eyes, or Divine Dementia.) We certainly saw the beauty in each other. We saw eternity through each other. And it seems that some part of us knew that we were in for a rough ride. Two highly entrained souls, using each other as a mirror, not quite realizing that each is beauty, each is eternity, each is mirror.

A Caregiver's Lunch

On the left, peas and mushrooms. On the right, mashed sweet potatoes and Yukon Gold potatoes.

Here are my vegan and gluten-free recipes. Use organic ingredients!

Peas and Mushrooms

1/2 lb. sliced fresh mushrooms
2 tablespoons lemon juice
2 tablespoons vegan buttery spread
1/4 teaspoon salt
1/4 teaspoon seasoning salt
a dash of pepper
1 10-ounce package frozen peas

Sprinkle the mushrooms with the lemon juice. Melt the vegan buttery spread and add the seasonings. Stir in the peas and mushrooms. Place in a greased glass dish and bake at 400 degrees for 35-40 minutes.

Mashed Yukon Gold and Sweet Potatoes

4 medium Yukon Gold potatoes, peeled and diced
2 large sweet potatoes, peeled and diced
3 tablespoons vegan buttery spread
3/4 cup rice milk or soy milk
1 teaspoon salt
1 teaspoon nutmeg

Place potatoes in a large saucepan and cover with water. Bring to a boil, reduce heat, cover, and simmer gently until potatoes are tender, about 15-20 minutes. Drain the potatoes and put them in a mixing bowl. Mix in the vegan buttery spread and salt, then add the milk and nutmeg. Mash the potatoes until they're smooth and fluffy.

Enjoy! And remember to take care of yourself first!

Here's an extra treat -- watch this video of Paul McCartney making mashed potatoes. You'll laugh out loud and you'll learn a thing or two...I certainly did.

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.

A Caregiver Purges Pills

I went through all of Romeo's prescription and over-the-counter drugs, purging them. This freed up an entire kitchen drawer and a good portion of one of the pantry shelves.

I'll work on the kitchen next. I'll remove every mug, every bowl, every glass, every pot and pan, every utensil that belonged to Romeo before we met, save a few that I use routinely. And then I'll rearrange the items in the cabinets, in the drawers, in the pantry. I'll pack Romeo's things gently, wrapping them in newspaper, placing them softly in the box. I'll seal up the boxes and label them with Romeo's name and the contents. I'll carry the boxes downstairs to the storage room.

And then I'll cry.

Another Man for the Caregiver

Oh, boy. I was in a local bookstore this afternoon, minding my own business, sitting in the cafe and enjoying a nice cup of steamed soy milk with sugar-free hazelnut flavoring (light foam), reading a book and then chatting on the phone with a friend who called my cell, when a distinguished-looking older gentleman tried to pick me up. Wow. This hasn't happened to me in a long time, and certainly never in a bookstore.

Gulp.

Several months ago, Romeo had told me that if the day ever came when he did not recognize me, if he ever forgot who I am, that he wants me to find another man.

Gulp again.

Last week Romeo told me that he wants me to find another man and wants to meet him so he can give a thumbs up or a thumbs down on him, as if he were my father. Romeo is only looking out for my future, he says, and wants to be sure that the guy is right for me. He wants to know that I'll be loved for the right reasons. He wants to be sure the man is a good guy.

Gulp, gulp.

I certainly have some energy blockages to clear before I can get over that hump.

The Caregiver and the Oracle

Going to the fortune teller's was just as good as going to the opera, and the cost scarcely a trifle more - ergo, I will disguise myself and go again, one of these days, when other amusements fail.

-- Mark Twain in a letter to Orion Clemens, February 6, 1861

I pick up the Magic 8-Ball and turn it, rolling it between my hands, barely noticing it, thinking.

Me: Would it have been better for us if Romeo had never developed dementia?

M8B: Reply hazy, try again.

Me: Okay. Would it have been better for us if Romeo had never developed dementia?

M8B: My reply is no.

Me: Oh, really? Let me try again. Would it have been better for us if Romeo had never developed dementia?

M8B: Concentrate and ask again.

Me: Shoot. Would it have been better for us if Romeo had never developed dementia?

M8B: My sources say no.

Me: Are you sure?

M8B: Yes.

Me: Well, what does a silly toy know anyway?

M8B: Without a doubt.

A Caregiver Left Behind

Today I am reminded once again that Romeo is leaving me. He has already left me. His fogginess of mind continues in spurts...more spurts, longer spurts.

Many times while I visit Romeo, he is foggy and confused, disoriented, hardly there. His body is there, like a tiny infant, just there. But Romeo himself, his mind, is off somewhere else.

I wonder whether on some level Romeo notices I'm there, if he's aware that anyone is around, close to him. I wonder if he can sense his body, if he can feel himself picking up the mug of tea on the table in front of him, if he can taste the tea, if he can hear the music playing in the background, if he can see that I'm there, if he can see anything.

In the past Romeo has told me that during these foggy periods, he is aware that he has a body but he doesn't sense much of anything. He is in no physical or emotional pain. He's simply there.

So, what to do? What do I do, what should I do, when Romeo is away in his fog? I do nothing. It seems that the best thing to do is simply sit with him. And that is what I do.

A Caregiver Walks Into the Fire

The phoenix hope,
Can wing her way through the desert skies,
And still defying fortune's spite,
Revive from ashes and rise.

-- Miguel de Cervantes Saavedra

Promise me you'll always remember:
you're braver than you believe,
and stronger than you seem,
and smarter thank you think.

-- Christopher Robin to Pooh,
A. A. Milne

"You're very courageous."

"What you're doing takes courage."

"You're showing so much courage."

These are things that people have told me since I've been a caregiver. However, I have never felt courageous. I've never thought of myself as being courageous.

I am a caregiver, and caregivers do what they have to do, never thinking about bravery. We simply do what needs to be done. We certainly don't look for any rewards. Our reward is taking care of our loved one. If we're not caught up in the stress and difficulty of caregiving, if we can focus on our loved one, if we can take care of our loved one from the platform of love, our reward is being able to give even more love. And in the act of giving through love, we receive love. We are fed more love. And then we give more love. It's a beautiful cycle that makes the caregiving experience a deeply spiritual one.

What I have learned by going through Romeo's things, by packing up his possessions and storing them in a safe part of my home, is that I am indeed courageous. This packing up process -- physically picking up each one of Romeo's possessions, touching each one, reminiscing about some of them, placing them in a box, sealing up the box and taking it downstairs to the storage room -- is a courageous act. Exposing myself to the emotions that come up, giving myself the space to feel each of those emotions, time after time, is like walking into a fire...willingly.

Each time I touch something of Romeo's that holds sentimental value (which is most everything), I consent to being burned. I give permission to the pain to take over, to take me into fits of hot grief and loss. And then I give myself permission to experience that pain in order to move on, to let my grief out, to let go of Romeo. Slowly, he's leaving me. For more than five years, Romeo has been in the process of leaving me. I must let him. And I must move on.

This packing up process would be enough to frighten many people away from feeling their feelings. And yet, I deliberately walk into the fire. I do it. I don't move away from it. I don't turn and run from the fire. I walk into it, without fear. I face it. I let its flames lick and flick up and down my body, throughout my body, burning me intensely, burning my skin, hair, organs, eyes. And it hurts. Do not think that it doesn't. It hurts tremendously. That deliberate act of entering the fire without fear, of saying, "Yes, let's get through this," is courage. I see that now.

When I begin a packing up session, I sense the courage as it enters my body. It's a gift, a support of great proportions that holds me as I begin, as I allow in whatever comes, as I experience my emotions, and as I am liberated from them.

This courage enters through the pores all over my body. It gathers in the chakras along my spine and circulates throughout my body. This courage takes over. It permeates me gently, escorting me through my current emotional landscape -- the mountains and plains and valleys of remembering Romeo and our life together -- and then to life without Romeo, to life that promises everything anew. Everything.

I will continue to deliberately walk into the fire, through it, and out the other end. And now I see that not only do I walk into the fire each time I begin packing up Romeo's things, but I am in the midst of the fire now, as I write this. My tears flow freely, as they do many times as I write for this blog. I walk into the fire many times a day without realizing it. Yes, I see that now.

And by now, you'd think I'd be burnt to a crisp, that I'd be ashes -- but that isn't so. There seems to be more to burn, more fires to walk into. So I simply continue to walk into the fire. Again and again and again. And one day, perhaps I'll rise from the ashes like a phoenix, renewed, remade, into another life.

Crying in Time

This afternoon I put on a CD as I begin to do more decluttering, organizing, moving Romeo's things into storage. The music is Afro Celt Sound System, Volume 1, Sound Magic, a sometimes sad, sometimes energetic cacophony of pipes, drones, flutes, drums, guitars, whistles, and countless other instruments that somehow all come together in an organic symphony of strong African and Celtic influences.

How difficult it is today to sort through Romeo's things! I cry, and I cry a lot. My crying mimics the voices of the instruments on the CD as we sound off together, in perfect unison, sometimes in harmony.

I come across greeting cards that I had given to Romeo for birthdays, anniversaries, Valentine's Day. I dig out the cards I had received from him throughout the years. I find trinkets from him. Little things he had made when he attended adult daycare, not so long ago. In particular, there is a cardboard heart-shaped box that he painted yellow. Inside is a slip of paper. It says:

To the world you are one person, but to one person you are the world. (Anonymous)

And I know that even though he did not write the sentiment, it comes from his heart.

I cry on and off for hours, salty tears running down my face, onto my sweater, onto the floor in the bedroom, the hallway, the living room, kitchen, bathroom, even the garage. The crying happens in starts and stops, in jags and jigs. I find a trinket, a piece of Romeo that holds special meaning, and I cry. I cry it out, cry out the emotion, the sadness, the confusion, the anger. I cry out the happiness, the joy, the honor of having been with Romeo.

Then I stop until I find another trinket or card, another remembrance of life with Romeo, and the crying starts again as the music holds the perfect background for my wails and tears. Without trying, unintentionally, my cries match that of the long cries of the pipes. My voice matches that of a long, sad drone. My heartbeat entrains to the rhythm of the drums. This rhythm of sadness and happiness, anger and joy -- this rhythm of emotion plays me and coaxes me to continue expressing it. There is more, much more yet to come.

Sock It To Me in Dementiaville

I went through Romeo's dresser today with the intention of boxing up his unused, out of season clothing and storing them, getting them out of the bedroom, into the storage room, making room for my new life without Romeo. There is a lot of this sort of thing to do throughout the condo.

It's not so much that I'm removing every trace of Romeo. It's more like I'm returning my space to what it was before I knew him -- only better, more to suit the new me. I'm a different person than I was when I first moved here, after the divorce from my first husband. And I'm a different person than I was when I first met Romeo. Life does have a way of turning us upside down and shaking us out. After a time, when the time is right for us, we must reassemble ourselves.

This is what I'm up to, going through the condo bit by bit. It's what I'm committed to doing (between other appointments, activities, etc.) for as long as I need to do it, for as many days as it takes to go through the entire condo, to pick up Romeo's things and store them, to honor the time Romeo and I have been together, to honor what the two of us have been through, and what we have yet to experience along this road.

Back to Romeo's dresser. It has six large drawers. Each measures 27" long, 15" deep, and 6" tall. They hold a good deal of clothing, the usual stuff: pajamas, t-shirts, shorts, pants, underwear, the odd trinkets. And oh, yes -- socks. Lots of socks. Lots and lots of socks. Two drawers stuffed full of socks.

How many pairs of socks are there? Well, Romeo has athletic socks, dress socks, thick warm socks, thin socks, slipper socks, socks to wear to bed. I count 102 pairs in all. One hundred and two pairs of socks. Enough for the rest of his lifetime, perhaps.

I box them up, remembering the days when he was able to dress himself, when he could put on his own socks. I box them up, wondering if he'll ever get to wear all of them, wondering how long he had been hoarding socks, wondering what other surprises are in store for me as I make my way through the rest of the condo.

Seventh Day of a Caregiver's Cold

I woke up on the seventh day of my cold feeling worse than I have felt in a very long time, and I realize that this is not a cold any longer, if it ever was.

I am lucky enough to get in to see a doctor on the same day. Sinus infection, she says. She prescribes amoxicillin, 500mg, three capsules twice a day for two weeks. "Oh, and by the way," she says, "it may take a week for you to start feeling better."

Great. I've been feeling badly for a week already. This is just great.

I stop by the nursing home to see Romeo. Probably shouldn't, but I haven't seen him for seven days.

When I arrive, Romeo is foggy. He is slow, he looks like his mind is far away, he barely notices me. This goes on for about 10 minutes. That's okay. I wasn't expecting him to come out of the fog at all during my visit, so it was good to have him back.

I'm there for only 40 minutes. Not long enough, I surmise (based on what, I don't know), to spread the sinus infection germs. As I'm getting ready to leave, to go home, to lie down and rest, Romeo confides in me.

"You know," he says, "when you first came in, I didn't know who you were."

"What?"

"When you got here, I didn't recognize you."

"Really?" That explains Romeo's fog. This is also the very first time Romeo has not recognized me. I hadn't seen him for seven days, and that's all it took for him to forget me. What a sweet soul he is to tell me, to speak it as if it were an every day occurrence.

Am I sad? Upset? Grieving? No. Right now, all I want to do is go home, lie down, and give this sinus infection room to heal. I'll process today's events later.

Sixth Day of a Caregiver's Cold

Another day away from Romeo because of my cold symptoms. It's been a week since I've seen him. This is getting old.

He called me this afternoon. "What are you doing?"

Me, with a scratchy voice: "I'm about ready to get some lunch."

"Oh, good."

"What are you doing?"

"Are you coming to see me soon?"

"I still have cold symptoms."

"Oh, are you drinking lots of orange juice?"

"All I have in the house right now is grape juice and apple juice."

"Get some orange juice. It's much better for you."

"Okay."

"Juliet, this will sound silly."

"Probably not to me. What is it?"

"Well, I know it's been a long time since you've been to visit. And I know it's because of your cold."

"Yes."

"But, I know this is silly, but I can't help but feeling that one day you'll abandon me." I could hear the tears in his voice, which made me tear up.

"Oh, Romeo, you're right. It's silly."

"I know." More crying from both of us. Gosh, we're wimps.

"You know, Romeo, that I will always do the best I can to see that you get everything you need."

"Yes, I know."

"And if you ever get to the point when you don't know who I am, you gotta know that I'll still come to visit you."

"Yes, I know."

More tears, more crying.

So that solves it. No matter what, no matter whether I am coughing, sneezing, sniffling, or not, I'm going to go see Romeo tomorrow.

Fifth Day of a Caregiver's Cold

Feeling much better today, but still low energy, and still coughing and sniffling and staying away from visiting Romeo at the nursing home. I'm still contagious and don't want to infect any of the residents there.

When I spoke with Romeo on the phone this morning, he told me about an incident this morning that worried him. It worried me as well. Still, he relayed the story with his usual god-like calmness and presence.

At the breakfast table, Romeo could not see his food on the table. He couldn't see anything on the table. His eyesight is fine, but dementia sometimes hijacks the messages that travel to his brain so that he never gets them. In this case, his eyes probably saw what was in front of him, but his neurological system didn't translate it for him, so he saw nothing. This often happens with dementia. Shoot.

Fourth Day of a Caregiver's Cold

Today was my crash and burn day, surrendering to the cold virus that's been visiting the past few days. My voice was nearly gone this morning, and by 10:00 a.m., it was gone.

I did absolutely nothing all day but lie on the couch with my blankie pulled over me, dozing, sipping water. I watched a movie, HGTV (my default channel), and the Food Network.

Oh, well, wait. Yes, I talked with Romeo today too, of course. He was so sweet and loving and full of advice on what I should do to take care of myself.

Romeo advised me, "Take lots of vitamin C, drink lots of fruit juice, and have some brandy. Brandy is very good for colds."

"I don't have any brandy in the house."

"Go out and get some."

"I don't want to leave the house."

"Call the store and have them deliver it."

"I don't know of any liquor store that delivers."

So I cuddled up under the covers without the brandy.

Later, I felt up to watching a movie. The sillier, the better. I love silly movies when I'm sick. They make me laugh, and laughter is good medicine -- maybe about as good as brandy.

Typically I put in a Marx Brothers movie when I'm sick, but I just watched the only one I own (A Night At the Opera) a day or two or three ago and didn't want to watch it again. And I didn't want to drive to the library to get a different one. So I decided on a movie in my private collection, pulled it off the shelf, and popped it in. Three Amigos, with Steve Martin, Chevy Chase, and Martin Short. It did the job: made me laugh.

I'm not sure what it is about singing and talking animals that cracks me up so much. Whatever it is that makes you laugh, I highly recommend you do it or read it or watch it when you're not feeling well or when you're feeling down. Laughter is a great substitute when there's no brandy.

Third Day of a Caregiver's Cold

I feel fuzzy, drained, dopey. Regardless, I go to my acupuncture appointment. Afterward, I intend to go home, have lunch, and sleep. And that's what I do.

Romeo and I have missed each other's phone calls today, so no phone conversation with him until tomorrow. I don't visit today, as I'm probably still contagious and don't want to expose anyone at the nursing home to my cold germs.

But silly, crazy me...later, I go out with friends for dinner and some great music, come home, and stay up way too late, as has become my custom. Staying up late. Why? Because I can? Because I'm not working now and can do that? Because I'm naturally a night person? Because I usually need only six hours of sleep each night? Because I'm sick? Dunno. I'm too fuzzy, drained, and dopey to know or care.

A Caregiver Resting

Okay. I admit it. Completely. Here's the news: I'm not good at taking care of myself. There it is. It's out for the world to know. A caregiver who isn't good at taking care of herself. It's true, and not that unusual.

I've had a cold for two days, and today I had planned to stay in all day to rest. Lying around the house, reading, watching TV, drinking lots of fluids, giving my body the rest it needs to fight the virus.

So here's what I did all day. Here are some of the things I did to "rest":

• Did two loads of laundry, including all the sheets and linens on the bed.
• Made some Creamy Dairyless Rice Pudding (photo above, recipe below).
• Played my djembe drum.
• Filed lots and lots of papers.
• Caught up with emails.
• Unclogged a slow drain.
• Talked with Romeo on the phone.
• Did some writing.
• Went to drum class after dinner.
• Ate some of that Creamy Dairyless Rice Pudding (yummy!).
  

My bad. But I'm feeling a little better (obviously). Tomorrow is another day, and I'm sure I won't rest then either, no matter how harshly I scold myself.

From Moosewood Restaurant Low-Fat Favorites: Flavorful Recipes For Healthful Meals:

Creamy Dairyless Rice Pudding

4 cups water
3/4 cup white rice (preferably basmati)
1 quart plain soy milk
1/2 cup pure maple syrup
1 teaspoon ground cinnamon
1 teaspoon pure vanilla extract
1/4 cup raisins
1 teaspoon freshly grated lemon peel

Bring the water to a boil in a heavy saucepan. Add the rice and simmer, uncovered, for 5 minutes. Remove from the heat and allow to sit for 5 minutes. Drain the rice and return it to the pan with the soy milk, maple syrup, cinnamon, vanilla, raisins, and lemon peel. Bring to a boil, then reduce the heat and simmer gently for 30-40 minutes, stirring often, until the pudding is thick and creamy. Best if chilled at least 6 hours or overnight.

Enjoy! And remember that each and every one of us needs to take care of ourselves, not just us caregivers. Yep, I'm listening to that advice too. Maybe I'll even take myself up on it the next time I get sick.

A Caregiver's Cold

This morning I woke up with a cold. There were no warning signs, no symptoms that came on slowly. I simply woke up with a cold. Weird.

I called Romeo to talk with him, to tell him that I wouldn't be coming to see him until the cold is gone. I don't want to pass along the germs to him or anyone else at the nursing home.

Romeo understood, of course. But his next words melted me completely: "Oh, my Beloved, I want to come home and hold you and take care of you." Oh, yes, I would like that more than anything right now. Me, who doesn't like to be held or touched when I'm sick, would love it more than anything if Romeo were here to take care of me.

When I'm sick, I prefer to curl up in a ball under the covers all alone. Let me be. But for Romeo, I would let him hold me. For Romeo, I would let him fuss over me, tuck me in, kiss me on the forehead, bring me cough medicine and hot tea, read out loud to me, do reiki on me, bring me vitamins and tinctures, and sing lullabies to me. For Romeo, I would let him hold my hand, massage my aching muscles, and tell me fairy tales. For Romeo, I would fall asleep in his arms.

But Romeo can't be here. So I will do what I've always done when I'm sick. I lie on the couch with tissues and hot tea within reach, a favorite blankie tucked all around me, and pop in a movie. This time, though, I fall asleep and dream of Romeo as the Marx Brothers play in the background.

Nothing In Dementiaville

Romeo, sitting in his wheelchair in a deserted conference room we claimed for ourselves, raised his head, looked out the window, thinking he was looking at me, and said, "I'm not here very much."

"Not here, in this room very much?"

"No. I mean that my mind isn't here very much. It's somewhere else."

"Oh. Yes, I know that."

"You do?"

"Do you know where your mind is?"

"No."

"Okay. When your mind isn't here, what's it like?"

He continued to gaze out the window, and as his facial expressions changed, I realized he still believed he was looking at me, engaging me. I do not correct him. To keep his thoughts on topic, I don't ask him to turn his head the other way so he's actually looking at me. He thinks he is, so I let him be and gently continue.

"Romeo, do you see anything when your mind isn't here?"

"No, nothing."

"When your mind isn't here, are you aware of your body?"

"Yes."

"Do you feel sensations in your body?"

"No. It's just there."

"And what do you see?"

"Nothing."

"And when your mind isn't here, what emotions do you experience?"

"None."

"Nothing at all?"

"No."

"Do you suffer, are you in pain?"

"No."

"Are you happy?"

"No. I'm nothing. I just am."

"Is it a pleasant place to be, just being?"

"It just is."

And that was all Romeo had to say about what it's like for him in Dementiaville. On my end, I am relieved to know that he isn't suffering. And I know now that I can relax and there is no need to worry when his mind isn't here. He's okay and everything is as it should be.

Love and Poetry in Dementiaville

At the touch of love,
everyone becomes a poet.

-- Plato

Three days after we met, Romeo began to write love letters and poetry to me, and I wrote back. Here's a sampling:

Dearest Juliet,

Since knowing you,
My heart has opened yet further
To embrace all womankind.

Love,
Romeo

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

Dearest Juliet,

Not only have you taken up residence in my heart, but now in my mind, too! Am I therefore "possessed?" If so, I love it!!!

Love,
Romeo

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

My Dear Romeo,

A poem I wrote for you:

Request Granted

You, my gentle jewel, sweetly ask for my kiss.
I am touched, for few have requested.
Instead, they have tempted and enchanted
Then invoked empty possibilities
And compromised my breath.

I am curious -- do you know what you ask?

Our kiss would be a primordial gesture,
An exchange of life force,
A blending of our spirits.
We would know each other's beginnings
And give birth to each other throughout time.

You know, don't you?

With all my heart,
Juliet

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

Dear Beloved Juliet,

A beautiful poem; tender, exquisite -- and oh! so true! Yes, we are cut from the same piece of cloth, you and I. The Tailor repeated His/Her work so that a new, unimaginable synchronicity could be born -- souls melding even before they returned to the Ultimate Unity.

Love you completely,
Romeo

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

Dearest Juliet,

I don't know why I missed you so today.
Last night we went so deeply,
Exquisitely. Blissfully.
And maybe that stirred the old stagnant waters of sadness, aloneness and unhappiness
That I experienced in my puberty.
All I know is that I miss you.
That is the stark, naked truth of me.
And I love you.

Romeo

A Caregiver's Joy and Lament

It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all going direct the other way - in short, the period was so far like the present period, that some of its noisiest authorities insisted on its being received, for good or for evil, in the superlative degree of comparison only.

-- Charles Dickens, in A Tale of Two Cities

It's over. It's been over. Romeo's dementia continues to take him away. Whatever he and I came together to do is ending. We've finished it. I continue to care for him, to look after him, to be there for him, to love him. But it's over.

My sorrow lives on, and it will for a time, but my life with Romeo is over. It's over before it had a chance to begin, to really begin.

My joy -- ah, this joy. So unlike my sorrow, this joy lives on. This joy continues to live. But the joy is not over. My joy is alive and will continue to live for as long as I do, and could very well live beyond my time. The joy of having had Romeo in my life, present in my life, the joy of loving him, the joy of having been loved by him, of being loved by him, in a way no one else has ever loved me -- that joy will always be with me. It will last a lifetime, and it will always be at the root, the base, of who I am, of what I'm about. It will continue to encourage me and remind me that once upon a time, not so very long ago, there was sorrow, yes...but it is joy that survives.

Juliet's Personality and Soul Card

In my previous post, I talked about Romeo's Personality and Soul Card. Now it's time to talk about me and my Personality and Soul cards.

I made calculations to determine which of the Major Arcana tarot cards represent both my Personality and Soul cards and Romeo's (see instructions below for how to determine your Personality and Soul cards). You can think of the Personality and Soul cards as being similar to astrological signs. They are your personal lifetime cards. They help give insight into your life, to your personal journey.

The Personality card symbolizes what you've come into this particular lifetime to experience, learn, study. The Soul card indicates your soul's purpose throughout all of your lifetimes. As it happens, my Personality card and Soul card is the same card, and so is Romeo's, albeit we each have different cards. Because our Personality cards and Soul cards are the same, it means that we're both working specifically on our soul's purpose. It means that we are more focused, more direct. The word intense comes to mind.

My Personality and Soul card is The Hermit. Romeo's is The Chariot. Here's my take on what The Hermit symbolizes in my life.

The Hermit is about the inner life and spiritual quests, about the higher self, the inner voice and about following its guidance. The Hermit speaks directly to my life as caregiver to Romeo, as it implies that the forced limitation and circumstance of his dementia cannot be changed. Even time cannot change the fact that Romeo has dementia. Time will only make it worse, more pronounced. It will take Romeo over completely.

By accepting Romeo's dementia as well as my role as his caregiver, I've come to realize that it's best not to struggle against the the situation. And through this realization has come a sort of calm acceptance, a graceful humility that has helped me navigate the ups and downs of my caregiving life that could very well have been unmanageable without The Hermit's steady, wise influence. Not to say that there aren't challenging times -- there are plenty. However, The Hermit's presence is a reminder that I can choose to trust the bumps and falls that are part of being a caregiver, that come with loving someone with dementia. I can only watch in silence as our lives unfold, as Romeo's dementia progresses. I can only listen as my inner voice guides me to say, to do whatever is best for Romeo, for me.

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

To determine your Personality and Soul cards, follow this process (from Tarot for Yourself: a Workbook for Personal Transformation, by Mary K. Greer):

Add together your month, day, and year of birth.

Example:

October 14, 1947

10 + 14 + 1947 = 1971

Then add each digit. 1 + 9 + 7 + 1 = 18.

If the resulting number is 1-22 (as it is in this example), this is your Personality Number. Then match up the number with the corresponding Major Arcana card. In this example, it's the 18th Major Arcana card, The Moon. To determine the Soul Number, add 1 + 8 = 9. The corresponding Major Arcana card is #9, The Hermit.

When the birthdate number adds up to be more than 22, reduce the number down to 22 or less. This is the case for both Romeo's birthdate and mine.

Romeo's birthdate:

November 23, 1944

11 + 23 + 1944 = 1978

1 + 9 + 7 + 8 = 25

2 + 5 = 7

Corresponds to Major Arcana card #7, The Chariot

Juliet's birthdate:

September 28, 1952

9 + 28 + 1952 = 1989

1 + 9 + 8 + 9 = 27

2 + 7 = 9

Corresponds to Major Arcana card #9, The Hermit

When the birthdate is reduced to a 1-22 number, the corresponding Major Arcana card is both that person's Personality and Soul cards. This means that in this lifetime, you're working specifically on your soul purpose, which makes you more focused and directed.

Romeo's Personality and Soul Card

I must admit that I have a difficult time reading Romeo's tarot cards. I suspect it's because of his dementia. The information that's transmitted to me is scrambled, garbled, out of focus, and I haven't been able to relate it to his life...because his life isn't a typical life. It's a life with dementia.

I am by no means an expert at tarot. I dabble in it. Or should I say that I dabble at dabbling in it. So I'm lost and don't know what to make of Romeo's cards. Nevertheless, I'll take a stab at it. Who knows? Something useful or insightful may come out of my ramblings.

I made calculations to determine which of the Major Arcana tarot cards represent both Romeo's and my Personality and Soul cards (see instructions below for how to determine your Personality and Soul cards). You can think of the Personality and Soul cards as being similar to astrological signs. They are your personal lifetime cards. They help give insight into your life, to your personal journey.

The Personality card symbolizes what you've come into this particular lifetime to experience, learn, study. The Soul card indicates your soul's purpose throughout all of your lifetimes. As it happens, Romeo's Personality card and his Soul card is the same card, and so is mine, albeit we each have different cards. Because our Personality cards and Soul cards are the same, it means that we're both working specifically on our soul's purpose. It means that we are more focused, more direct. The word intense comes to mind.

Romeo's Personality and Soul card is The Chariot. Mine is The Hermit. Here's my take on Romeo's Chariot as it relates to his life (for an interpretation of my Personality and Soul card, see the next post).

Typically, The Chariot is about harnessing and directing all of your forces toward your goal, about taming your fears and staying in tune with your inner wisdom so you can fight for what's important to you, to meet your challenges and be able to succeed.

As Romeo's Personality card, as his Soul card, does this accurately represent what his life has been about? I do not know. He's had dementia during most of our time together, and I don't know if his recall of his life is accurate. I know he was and still is a spiritual seeker, that it has been his driving force for many years, that he traveled to India from his home in Britain and then eventually to Oregon to be with his spiritual teacher.

Throughout Romeo's life, he wasn't interested in raising a family, he wasn't interested in developing his career as a computer programmer, and he wasn't interested in accumulating material things. His life was about spirituality. His goal was spiritual development, his goal was enlightenment. Period. He was focused, it was easy for him to stay on target, and he struck down obstacles with such ease that they hardly seemed like challenges.

In this sense, The Chariot proves him right as a Personality and Soul card -- he most definitely has been successful at directing all of his energy toward his goal, toward spiritual development, and he's been so successful that a number of people believe him to be enlightened. I know better -- I've lived with him -- wink, wink, grin, grin. But he is the most spiritually developed person I know. Romeo is my hero, my rock, my lighthouse.

Now, with dementia, Romeo's light is fading, and he no longer thinks of spiritual development. He doesn't quite follow the logic in our spiritual discussions, although he comes up with some insights that wow me.

Is the tarot game over? Does Romeo have any life purpose and soul purpose left? He claims he has no goals. I think he does. He may not be conscious of them, but he is definitely living a purpose, contributing something in his every day life, at least on his "good" days. He is a channel for Love. It seeps out of him as he greets people, as he speaks with them, interacts with them, and even as he simply sits silently. He is Love. Simple, pure. He melts hearts and raises the level of love present in the room. What an honor it is for anyone to be in the presence of this man -- whether they know it or not.

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

To determine your Personality and Soul cards, follow this process (from Tarot for Yourself: a Workbook for Personal Transformation, by Mary K. Greer):

Add together your month, day, and year of birth.

Example:

October 14, 1947

10 + 14 + 1947 = 1971

Then add each digit. 1 + 9 + 7 + 1 = 18.

If the resulting number is 1-22 (as it is in this example), this is your Personality Number. Then match up the number with the corresponding Major Arcana card. In this example, it's the 18th Major Arcana card, The Moon. To determine the Soul Number, add 1 + 8 = 9. The corresponding Major Arcana card is #9, The Hermit.

When the birthdate number adds up to be more than 22, reduce the number down to 22 or less. This is the case for both Romeo's birthdate and mine.

Romeo's birthdate:

November 23, 1944

11 + 23 + 1944 = 1978

1 + 9 + 7 + 8 = 25

2 + 5 = 7

Corresponds to Major Arcana card #7, The Chariot

Juliet's birthdate:

September 28, 1952

9 + 28 + 1952 = 1989

1 + 9 + 8 + 9 = 27

2 + 7 = 9

Corresponds to Major Arcana card #9, The Hermit

When the birthdate is reduced to a 1-22 number, the corresponding Major Arcana card is both that person's Personality and Soul cards. This means that in this lifetime, you're working specifically on your soul purpose, which makes you more focused and directed.

A Frozen Caregiver, or a Deer Caught

Nobody was really
surprised when it happened,
not really, not on the subconscious
level where savage things grow.

-- Stephen King

I am a deer, caught in headlights. For the past few days, I have wandered around the house, around town, startled, frozen, blocked, unable to do much of anything.

What's going on? What to do? All I know is that I don't care. I simply want to be caught in the headlights. I want the light to shower me, to drench me, to cleanse and heal me. I'll sit here in the dark and let everything that's happened with Romeo these past five years hit me again. Without consciously knowing what I'm doing, I'll take everything, gnaw on it, love it, and let the light shine on it.

My eyes blink, but I can't move. I don't move my eyelids. Someone, something else moves them. My mind talks to me, but it's not me talking. It says, "Stay. Stay frozen. Let things wash over you. You don't need to do anything. Just stay frozen." Easy to do, since I'm caught in the headlights and can't move.

I ask my mind, "How long will this last? How long will I be frozen?"

"It doesn't matter."

And I suppose it doesn't. I am too frozen to care. The headlights shine on me. I remain still. But I know now that I am startled. I am surprised to be in this situation. To have been thrown into the role of caregiver to a new husband, before the honeymoon was over. If the headlights had spotlighted me during that first year we were together, would I have stayed with it all this time? I don't know. Too much to think about right now. I just want to be with it here, immobilized.

The Purpose of a Caregiver's Grief Process

I recently had breakfast with a friend who just returned from a long stay in India to participate in a deepening spiritual process. Over eggs and toast, pancakes and pure maple syrup, we sat for three and a half hours (!) talking about what had been going on in each other's lives while he was away. And over this simple and common breakfast, he reminded me of something not so simple and not so common. Something so obvious that I never noticed it, never thought of it, never acknowledged it until he said the words.

I told him about my grief at losing Romeo to dementia, how I hadn't been able to keep the stress level low no matter what I did, how an overwhelming sadness hung over me. I told him how the activities I did previously to keep stress on a leash no loner helped. Meditation didn't seem to help, drumming didn't seem to help, exercise didn't seem to help, qi gong didn't seem to help. Reading, listening to music, having fun, none of the usual stuff was working. I am stressed out, sad, anxious, tearful.

He wants to know more about my stress level. I explain that if my stress level, for example, were 8 on a scale of 1-10, then previously I was able to take it down to perhaps 3 or 4 or 5 by doing any one of my usual activities, my "usual stuff." Now, however, no matter what I do, that stress level stays at 8. And it's weighing on me emotionally, mentally, spiritually, physically.

His reply, so elegant, so insightful, so freeing, was simply, "What? You expect to feel good during a grief process?"

Aha. Of course. What was I thinking? The purpose of the grieving process, for goodness sake, is to grieve. Sheesh. I'm a little slow sometimes, especially when I'm in the thick of something, when my mind is occupied with something major like grieving for Romeo. Expecting to feel good during a grief process? Well, yes, I guess I had that expectation. Silly me.

The only question that remains now is how to make friends with that grief, how to greet it, let it come out, and express itself, and how to be joyful when it shows up. Grief is part of life, after all, and life is exquisite, grief and all. How, then, to welcome it? The answer, I think, is to honor it simply by letting it be. By recognizing it and inviting it to stay for as long as it wants. By giving it the space it needs to express itself. By letting it take over an entire day if that's what it wants. By crying for hours and being fine with that. By laughing when it's over, at least for the moment. And by knowing, really knowing, that this circumstance that Romeo and I find ourselves in -- is really okay just as it is. There is truly nothing we can do about it but ride it through, in both sadness and joy.