Sipping in Dementiaville

I sit in a chair beside Romeo's bed. We sip on soy steamers I brought from a local coffee shop, as Romeo enjoys an oatmeal raisin cookie -- his favorite sweet tooth remedy (besides chocolate, of course).

Romeo drops a few crumbs from his cookie onto his shirt, the bedspread. He asks me five or six times how he should hold the cup of soy milk so he can sip from it. He can't see well enough to detect the little drinking hole on the lid and asks me to point it out. I do exactly that. He lifts the cup toward his mouth but stops about 12 inches short. He holds the cup stationery and instead tries to move his head toward the cup of warm milk. This isn't working so well, as he can't move his head close enough to reach the cup.

"Romeo, move the cup to your mouth."

He can't figure out how to do this. I gently take his hand and move it toward his mouth, his fingers clutching the cup so tightly that the lid nearly pops off.

He stretches his lips and overshoots the hole. I realize it's simpler if I take his hand and back it up so the cup meets his outstretched lips. It works. He takes a drink, smiles, and begins the long journey to set the cup back on the tray in front of him. He misjudges the distance and nearly spills, but I'm right there to grab the cup without missing a beat. Another catastrophe avoided, without giving it a second thought.

A reflex, I do it without knowing what I do...until later. And then the full impact of it hits me. I am an extension of him. It's built into me. I anticipate his missteps, his wants and desires, and am there to pick up the slack, to present him with want he wants. As if he were me, as if we are One. Goodness gracious, this man, Romeo, tears at my heart strings.

Gratitude in Dementiaville

"Romeo?"

"Yes, Dear."

We're settled in the vacant conference room down the hall from Romeo's room. It's a typical conference room containing a long conference table, nicely padded burgundy chairs, a credenza, and a bank of windows that look south. We close the door. It's quiet in here. This is our "private" room where we come often to escape the buzz and activity of the nursing home, where we come to be alone.

"I want to tell you something, and I'm not sure if I've ever said this to you before."

Romeo's eyes become wide. He blinks, nods, reaches for my hand, encourages me.

"I'm not sure why I've never said this to you before. I think it all the time."

These days more than ever, I want Romeo to know everything I'm thinking about our marriage, about the life we had together, about the life we have now, about what he's meant to me, what he continues to mean to me, how he's helped me through my life, and how he's changed it. From the moment we met at the end of August 2005, Romeo and I have walked the rocky path of relationship with a tight grip on each other, both physically and metaphysically. Now, as we navigate our days with his dementia progressing, I want to spill the contents of my mind before him. It's my offering, my way of connecting with him, my worshiping of him.

As I sit before Romeo, his gaze focused on me in anxious anticipation and attention, I try to think of how to express what I feel. Emotions run through my brain. I see the energy of thoughts running before me, a seemingly endless movie reel of colored lights speeding across my mental landscape. I reach out for them, grab them, take them into my thoughts, but I am unable to translate them into words I can share with Romeo.

I am aware that Romeo waits for me to continue speaking. He has waited patiently these past few minutes as I search for what can't be searched for. And I finally find a way to tell him what I've felt for the years we've been together, for what we've been through together, for what we are yet to go through together, for what he means to me, for what he has meant to me, for what he will always mean to me.

"Romeo?"

His attention, his complete and total attention and presence -- this sweet, beautiful man who loves me unconditionally and whom I love unconditionally -- squeezes my hand with the strength of all the love he holds within himself.

I smile, receive his love, and say the only two words that come to mind...for in that moment, everything I feel for him has been reduced to...well...this:

"Thank you."

Thank you! Thank you? Is that all I can say to this wonderful man for what he's given me?

Ah, but he knows there's so much to that expression of gratitude. He's crying. And that makes me cry. So we sit there, in our private conference room, crying. And after we stop, he asks me to take him back to his room. We call for an aide to transfer him from his wheelchair to his bed. And then he drifts into blissful sleep, contented.

Always Together in Dementiaville, or Not

Romeo has lived in the nursing home now for nearly eight months. It's so hard to digest that. On one level, it seems that we have always been apart. On another, it feels as if we've never been apart. It's a funny place to hang, not being together but being together. Not really together, but together. Not apart, not together.

At various times throughout this difficult eight months (has it really been that long?!), I've reminded Romeo that I'm always with him, even when I'm not there in the room with him. Usually I would tell him this when he was sad to see me go, when he didn't want me to leave, when his tears began. It was a way to remind him of our togetherness, of the strong bond that brought each into the other's life. It was a way to comfort him.

But what I didn't realize until recently is that this works the other way as well! Romeo is always with me, especially when I'm not in his room with him. And knowing this settles me, calms me.

From the moment we met, Romeo and I have felt like we have been together since before the beginning of time and that we'll be together forever, that there is no end to our being together. Even when we're apart. Yep, this is definitely so.

Whisper Of Angels

I was yours before the first morn broke
Before the sun that woke the earth
And I was yours before rain kissed the ground
Before the first dawn's sound was heard.

I'll be the whisper of angels
And I'll be the frost on your glass
And I'll be the shadows at twilight
I'll be your first, your last.

I'm the rush -- the fire in your veins
Across the desert plains I ride.
I'm the ache the sound that midnight makes
A streak of star across the sky.

I'll be the whisper of angels
And I'll be the frost on your glass
And I'll be the shadows at twilight
I'll be your first, your last.

Waves of Love in Dementiaville

"One time," Romeo said, "when you were pushing me down the hall in my wheelchair..."

He paused, looking at me as if I were the last person he expected to see.

"When you were pushing me down the hall in my wheelchair," he continued, "I felt something."

Once upon a time, I was able to anticipate what Romeo was going to say, sometimes even before he began his own thought about it. Now? Not so much. I nodded, encouraging him to continue.

Uncharacteristically, Romeo picked up his thread once again. "Some time ago, when you were pushing me down the hall in my wheelchair, I felt...I felt something between us. Something happening between us."

"Something was happening between us?"

"Yes, something was happening between us."

I waited as Romeo searched for words to describe that something.

"I felt a wave between us...a wave of love."

"Oh."

Romeo looked intensely into my eyes and repeated, "A wave, a real wave of love. It moved between us. Back and forth. From me to you, from you to me." He smiled and seemed overwhelmed by the existence of waves of love, by the thought of that particular wave of love that connected us.

I nodded and encouraged him to say more.

"There is nothing more to say." He lowered his head in silence, perhaps in gratitude, in awe. "It was beautiful." He cried softly, briefly. Looking up, he smiled at me and reached out to hold my hand.

Roasted Veggies for a Caregiver

How many times have I heard that caregivers need to take care of themselves first? Indeed we do. It's just like the flight attendants instruct us before our flight takes off: when the oxygen mask drops in front of you, put yours on first, then help others.

Same with caregivers. If you don't take care of yourself, you could wind up sick at the bad end of the scale, or in a lousy mood at the best. Neither condition allows you to take care of your care recipient well. And even worse, you could pass your germs or lousy mood onto the one you're taking care of. What a mess you'd have on your hands then! A caregiver's job has the potential to be difficult at each day's starting gate; make it as easy on yourself as possible. You are needed!

One of my favorite ways to take care of myself is to cook a special dish now and then -- something that smells good while it's cooking, something healthy and nutritious, something that is easy to make and tastes as if Emeril Lagasse himself made it -- flavors that meld and play off of each other when you take a bite.

I'm not a great chef -- not because I can't (I probably could if I only knew how!), but because I choose to spend my time in other ways (like writing this blog). But there are times when I want to simply feel like I am a maestro in the kitchen. It is a treat to eat yummy food, and perhaps just as satisfying to have made it yourself.

And it gives me a sense of pleasure to spend some cozy time in the kitchen to prepare that yummy food. This week I made Herb-Roasted Winter Veggies. I have experimented with using various types of veggies. In the dish pictured above, I used carrots, zucchini, yellow squash, onions, mushrooms, red garnet yams, and beets. It's what I happened to have in the house at the time. I've also made this recipe using only beets. Mmmmm...

So go ahead, have fun making this recipe and sharing it.

Planning a New Year in Dementiaville

New Year's resolutions? Nope. Never, in fact. Goals and objectives? Yes, of course.

Throughout the years, it's made more sense for me to establish personal goals and define what will get me there rather than make resolutions that are destined to fail. (See Blame It on the Brain for a discussion about the science behind failed resolutions.)

For decades now, I've been recording and tracking my goals on a simple form that I found tucked in the back of a generic sort of day planner. This goal sheet contains seven areas, each addressing a piece of the pie that represents a balanced life:

• Intellectual (books, education, self-improvement)
• Physical (exercise, nutrition, health)
• Spiritual (psychological growth, fulfillment)
• Family (activities, outings, priorities)
• Financial (income, budget, security)
• Career (position, level, expertise)
• Social (entertainment, friends, fun)

Living in balance has, of course, become even more important since I've been a caregiver...and much more difficult. It now takes more focus, more time, more patience to complete a goal. As a result, I have fewer of them -- many fewer. For example, a couple of years ago, my only goal in the "Career" area was to create an art studio in my home. Before I was a caregiver, that task would have taken me a weekend to complete. As a caregiver, however, it took about six weeks. Time is simply not as available to me as it was previously, and I've had to make peace with that. Life has been much easier since letting go of being the super achiever I once was. And although life has not slowed down, I have learned to be easier on myself...and on others as well.

What I didn't expect from an art studio was the benefits to my well-being. I could enter the studio, my private place, whenever I wished! I could do all of the things that disturbed Romeo when I did them in the common areas of our home. In my studio, I created art to enter into local shows, I played music, I danced (on some occasions, this is all I did in there), I laughed. I also used the space to write, read, meditate. In short, I found myself again. Sometimes in my studio, I cried tears of joy for simply having a space of my own.

Throughout the time I've spent being Romeo's caregiver, I've learned that not having as much time available for myself is truly okay. It is, after all, a temporary situation. For now, my objective is to remain as balanced as possible while taking care of Romeo. My main role as caregiver allows time to take the small steps toward what I want to do. So what if it takes much more time for me to get there? I don't know what's more important than taking care of Romeo, besides taking care of me.