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.