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?