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.

The Roller Coaster of Emotions With Dementia

During a single day, during a single hour, sometimes during a single minute, Romeo's emotions, as well as mine, can climb to unbelievable heights and sink to lows just as unbelievable. We also experience everything in between. Riding it out has become one of the hallmarks of our lives, now that Romeo lives with his dementia in a nursing home, and while I live with his dementia shuttling from my home to his nursing home, to errands and events and other appointments.

The traditional roller coaster ride involves first a long, tall climb. You sit in the car as it slowly, slowly chugs up the steep incline. You think you might reach the top by sundown, but then you're there, poised at the top of the world, taking in the view, knowing that what goes up must come down. The anticipation of the drop sits in your stomach.

Since last summer, Romeo and I rode the quick pace of his dementia as it worsened, as he lost abilities to perform routine daily tasks like dressing himself. This steep upward incline, this escalation of loss, I knew, would one day arrive at the top, the place where there would be nowhere else to go but down. Still, we sat poised, watching the view, knowing all we could do was wait for the drop. That anticipation sat in my stomach, and I worked to let it out, to unblock it, to simply be in the present and enjoy the view as it was for now. Damn the dementia -- full speed ahead into life!

In the real world of roller coasters, after the clickety-clack, suspenseful climb to the top of the first incline, after taking in the enticing view from that height, after the lump of anticipation of the drop, comes the drop itself. Now the human cargo of the coaster raises its combined vocal chords in screams of fear, delight, laughter. They realize this roller coaster ride is a risk, yet a safe risk. They'll be fine.

In contrast, the roller coaster ride of dementia is certainly unnerving. My screams, however, have not been the screams of fear, delight, or laughter, but rather the anguished cries of loss and the fitful wails of disbelief and anger. Romeo and I have not ridden the roller coaster of dementia quietly. Like the real-life coaster riders on their first drop, we know that the dementia roller coaster ride is a risk, yet a safe risk. We know there are more bumps to come. Yet, we are fine. We will continue to be fine.

The roller coaster ride continues. A straightaway, then a small incline, then a small drop. But that first drop has unnerved all of its riders, and they scream during each new yet short drop as if it were that first one that nearly cleaned out their insides. They scream while riding the short drops that realistically should be a breeze. It's only a short drop, nothing at all like the first.

And so it goes on the dementia roller coaster. Again, with each new loss Romeo experiences, with each task he can no longer perform, comes a silent scream from my little mind as if it were that first gut-cleansing drop that unnerved me completely. These screams do not reach Romeo's ears. I tell him he's fine, and he is. Thank goodness he believes me. I tell myself that I'm fine, and I only half believe it. I know there is more to come, more drops, more screams.

Our real-life roller coaster ride now comes to an end. The coaster, after having climbed and dipped for several minutes over a steel and wooden landscape, comes to a rest where it began its predictable yet harrowing journey. The riders disembark, laughing, maneuvering on legs that have, in that short time, lost the feel for land. Some return to waiting family or friends to tell the story of every climb and drop. Others get back in line to ride again.

As for Romeo and I, our dementia coaster has not yet reached its destination. Our ride has not yet come to the end. We still ride the escalation of loss, we still sit in anticipation as we approach the top, not knowing quite where it is. We still admire the view as we move forward. We still scream silently during the drop, each holding tightly yet gently to the other.

When our ride has stopped, when there are no more climbs or dips or bumps, what then? It will be only me, Juliet, disembarking without my Romeo. I will exit the coaster, stand on the platform, look back longingly at each of the climbs and dips and bumps Romeo and I experienced. We are okay, I am okay. I will tell the story of every climb, dip, bump to anyone who will listen. But when the ride attendant pushes me along to the exit, will I be able to get back in line to ride again?