Asking for Money in Dementiaville

Planned Parenthood, Foundation for International Community Assistance, Greater Yellowstone Coalition, Wildlife Conservation Society, The Trust for Public Land, Save Tibet, Doctors Without Borders, etc., etc., etc.

These are some of the organizations that Romeo gave money to when he was able to care for his own finances. There are about 40 other organizations that Romeo contributed to.

Throughout our time together, he trimmed the list down to only one organization. I won't say which. Just suffice it to say that all of the other organizations still send him requests for money. Every day I receive a stack of mail consisting almost entirely of requests from these various groups. Every day I go through the unusually large stack of mail that's delivered, every day resenting the fact that I must do this. Most days, there is only one or two pieces of mail for me (mostly bills) -- some days, not one envelope is for me.

Lately, however, I've noticed that this stack, the daily stack of mail that comes every day, which used to be about two inches high, has now dwindled to perhaps half an inch tall. That's good for the trees, the environment. It's good for me, too. I do tire of this daily reminder of Romeo's changed condition. Sometimes it's painful, the daily visions that come forth of Romeo and the joyful time he spent every day going through this stack and dutifully writing checks to each of these organizations. How he looked forward to the mail every day, and how he enjoyed donating his money to them. At other times, these memories bring a smile to me. Recently, though, they only make me yearn for the old days when Romeo was able to function normally, for the old days before dementia had a strong hold on him, for the old days when he lived here with me.

Part of me looks forward to the day when the daily mail brings no mail to him at all. When all the envelopes are addressed only to me. When the requests that come to Romeo from charities and humanitarian and environmental organizations no longer come in the mail. When they stop coming all together. And then there's the part of me that dreads the day.

Do You Know Who I Am?

I enter Romeo's room, once again not knowing what to expect. Again I pull a chair to his beside, make myself comfortable. He smiles, says hello.

I ask the burning question, the inevitable question. "Romeo, do you know who I am?"

He is amused. He chuckles. "You silly goose. Of course I do!" He laughs again.

I have to hear him say my name...just in case he thinks I'm someone else. I have to know for certain that he really, really, really knows who I am. Besides, I love the way he says my name. "Romeo, would you please say my name? You know how I love to hear you say my name."

He takes my hand in his, searches my eyes to make our connection deeper, and says, "Juliet, my beloved wife, the love of my lifetimes, I love you."

He continues. "Juliet, in our next lifetime, we must promise each other that we'll be together all our adult lives."

"Yes, and that we'll be healthy, no dementia."

"No dementia."

We remain still and silent for quite some time, each of us lost in our private thoughts of a life together, sans dementia.

Coming Out of the Fog in Dementiaville

Once again I walk into Romeo's room at the nursing home, pull a chair to his bedside. I catch his gaze, smile, hesitate to ask the question but forge ahead with it anyway.

"Do you know who I am?"

"You are Juliet, my wife."

Yes, yes, yes!!!

Romeo continues. "I know you are my wife, but I have no memories of us being together."

"It's okay, Romeo." I smile, my heart filled with love for him. "Is it okay if I hold your hand?"

He reaches out and takes my hand, squeezing it gently. He lets me kiss him. This is beautiful, and it is enough for now.

Despair With Gift in Dementiaville

I walk into Romeo's room at the nursing home. He lies in bed, eyes closed. I quietly slide a chair to his bedside and sit down. He opens his eyes. I smile. He responds with a quizzical look.

"Who are you?" he asks.

I want to think this is a joke. I want to believe that Romeo is pulling my leg. He's teasing me, isn't he? He knows who I am, doesn't he? He's always recognized me. Surely he knows who I am! Surely he knows we've been married for more than five years! And surely he knows that we each are the love of each other's lifetimes! Right?

Maybe not. I cannot react as if it were a joke, Romeo's not knowing me. If it's true -- if he truly does not know me -- well, I have made a vow to myself that I will always take him seriously when things like this happen. To preserve his dignity. This is what he is entitled to, his dignity.

"I am your wife, Juliet."

"Oh."

"Do you remember me?"

"No."

"It's okay. Can I hold your hand?"

"No."

"Okay. Do you want me to read to you?"

"Yes, that would be nice."

So I read to him. Later, when we have finished the chapter, I ask again if I can hold his hand. This time he says yes. His hold on my hand is nonexistent, but I hold his softly. We sit silently for a while. He is tired and drifts into a shallow sleep, comes back for a few seconds and drifts again.

"Would you like to go to sleep now?"

"Yes," he says.

"Is it okay if I kiss you?"

"Yes."

I kiss him gently on the cheek. He closes his eyes. I leave, holding back oceans of tears.

On the way home I stop at the grocery store. At the entrance is a small display of carnations and beside it a sign:

Need a Lift?
Take a Free Carnation

I recognize this as a gift from the Universe. It could not have communicated any more clearly to me than this, than with this flower. I silently offer my gratitude: "Thank you from the depths of my being." Its response is a wave of love that washes over and through me and surrounds me, embraces me. I smile, close my eyes, inhale that love and hold it inside. "Thank you."

I choose a plump, moist, red carnation. Carnations, the flower of love. Red, the color of love and the symbol of blood and life.

A few minutes later, at home, I fill a vase and place the carnation in it. I put it on the coffee table and sit on the couch. As I admire and study this simple flower, tears come. I cry with abandon. Again. And I know that I am supported and embraced and cared for and loved.

A Daisy Chain in Dementiaville

Romeo and I sit in the TV room with a host of other nursing home residents, watching the news. On my right, Romeo sits in his wheelchair. We hold hands.

As the weather report comes on, another resident whom I'll call Sarah, is wheeled in. I have seen her many times before. She has always appeared to be in a trance, not quite in this world but not quite out of it either. I have never heard her say anything, not one word.

It's crowded in the TV room, but there's a space next to me. A nursing assistant wheels Sarah into the room and parks her to my left. Everyone is quiet, eyes on the television. After a few minutes, I feel someone pick up my left hand and slip it into hers. She holds my hand, squeezing it gently over and over again. I turn my head and see Sarah, holding my hand, smiling, still gently and happily squeezing my hand.

She makes eye contact with me! She turns her head to face me. She smiles, her eyes looking directly at me, then at our entwined hands, then back again to my eyes. She gently squeezes my hand again and again. I feel the love circulating between us. It travels from Sarah through me to Romeo, back through me and then through Sarah. A sort of daisy chain of love. I don't even notice as the five-day forecast comes on screen. Who cares about the weather when such sweet and innocent and sincere love is present?

Throughout our time together and during this journey that Romeo and I have undertaken with his dementia, we have been to many unknown places, experienced many surprising and wild moments. Yet here is another, an unexpected soul-filled moment, another opening of the heart.