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.