Missing Romeo and Coffee Shops in Dementiaville

The past week or so has been hard on me. Well, okay, nearly my entire life with Romeo has been hard on me. The difficulties simply change. The newest development involves crying...again. And once again, I find myself trying to figure out what it's about this time around.

Sometimes I can associate a series of crying bouts with what's happening currently with Romeo's progression of dementia. Other times, it isn't so clear. Sometimes I never figure out what it is. I don't think it matters so much, really. What matters is that I don't hold it in, that I meet it head-on, that I let the crying come, and that I trust it will cleanse me. It always does.

Several times this past week I found myself in a bookstore having a hot drink, relaxing and actually reading a book, something I love to do but have done little of in the past year. I wanted the quiet time, alone, to be anonymous to people around me. I sought out the time and the place and the mood. I felt relaxed. What a concept -- me, relax? On purpose? Nice.

Toward the end of each of my coffee shop visits this week, I looked up, half expecting to see Romeo seated across from me, his nose buried in his latest reading treasure, the concentration and pleasure animating his features. But of course, Romeo wasn't there. He wasn't across the table from me. He's in a nursing home.

I thought about the nearly daily visits Romeo and I would make to bookstores and coffee shops. He enjoyed this so much, and I loved it because he did, because he was happy, and I loved to make him happy. It seemed to take so little to please him then. I gave him everything I could of what he wanted. I still do, often going out of my way. He can do so little for himself. I want to give him the world, the universe.

After each of my recent coffee shop visits, when it was time to go home, I would look at my empty cup, close my book, survey the other people in the coffee shop, and pack up my things. This happened with each coffee shop visit this week. After each visit, there were tears in my eyes. I stifled the urge for a full, blown-out good crying session. I drove home, still fighting that urge, holding it at bay until I arrived home safely, parked the car in the garage, waited in a daze for the garage door to close, and made my way into the protection of sanctuary, of home. Each time, I cried until there were no more tears, again.

You'd think that I'd want to stay away from bookstores and coffee shops, but I feel drawn to them now. It's bringing up stuff for me to clear. It doesn't look like I'll stop doing this, at least not until I'm done, whenever that will be.

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.

A Caregiver's Daisy Chain of Grief

All summer she scattered the daisy leaves;
they only mocked her as they fell.
She said: "The daisy but deceives;
'he loves me not,'
'he loves me will,'
One story no two daisies tell."
Ah, foolish heart, which waits and grieves
Under the daisy's mocking spell.

-- Helen Hunt Jackson, the Sign of the Daisy

Another day of letting grief go. It came unbidden, on its own. It filled my day, spilling over into the evening. My emotional faucet opened, and it flowed throughout the daylight, twilight, and dark. My personal river of tears, shedding grief. Pure grief. Then, as quickly as the faucet opened, it closed.

I still don't know what it is specifically I'm crying about. Certainly it's about losing Romeo to dementia, bit by bit. Certainly it's about us not being able to live our lives together. Certainly it's about saying good-bye. He loves me not -- how could he leave me like this? He loves me will -- he is such a sweet, gentle man to leave me quietly, slowly.

As the daisy (or day's eye) opens and closes with the sun, so my faucet of grief opens and closes like the kitchen tap. When it's running open, my tears could seemingly fill buckets. When it shuts off, I am dried up, empty, and wonder how much more is beneath the surface. While I want all of it to come out, I also wonder when or how I'll be able to live a "normal" life again.

Like many young girls, I plucked the petals off of daisies and asked those two questions incessantly: He loves me? He loves me not? Usually the daisies proclaimed that he loves me, even when there was no "he" involved whatsoever. Were those young girl "he-less" times foreshadowing my now? Maybe...maybe not. It hardly matters, really. I simply need to let it all out, however long that may take.

A Caregiver Cries

When you are sorrowful
look again in your heart,
and you shall see that in truth
you are weeping for that
which has been your delight.
-- Kahlil Gibran

I began to cry yesterday morning. I simply started crying yesterday morning and didn't stop until 3:00 a.m. today.

I don't know why, don't know the cause of my tearfulness, although it probably had something to do with the grieving process, my grieving process in losing Romeo to dementia. I'm grieving the loss of my husband to dementia, grieving the loss of his presence at home, grieving the loss of the future we had anticipated before dementia, grieving for his pain and suffering, grieving for the love of my lifetimes.

Nothing in particular sparked my tears. Nothing in general sparked my tears. They simply came, flowing strongly, loudly. No thoughts, just tears.

I let them flow. I sat cross-legged on the couch with a box of tissues, and I cried. I moved to the dining room table, and I cried. I got up and moved to the desk in the study, and I cried. I jumped onto the bed and hugged the pillows, and I cried. I sat cross-legged in the comfy, overstuffed chair in the study, and I cried. I went to visit Romeo in the nursing home (probably not a wise move), and I cried. I came home and sat cross-legged on the couch with a box of tissues and started the cycle again. Nothing to do but let it out. It kept coming. I soaked in my spa tub and cried into the lavender aromatherapy bath. The tears kept coming, my sobs matching the rhythm of the water spouting from the jets.

Finally, in the wee hours of the morning, as quickly as it started, it stopped. There were no more tears. They were gone. I was quiet for the first time that day. And I felt better. I finally felt better. The sadness and grief were gone...for now.

Tired and spent, with nothing more to give, I crawled into bed, under the comforting pressure of the blanket and the soft sheets. I ran my hands through my hair, massaged my face, neck, and head. I thought of my sweet Romeo and wondered what we could have been thinking to stage such a difficult life as this for ourselves. And then exhausted, body pulled into a fetal position, I slept the long and dreamless sleep of a newborn baby. Held, cradled, showered with unconditional motherly love, I slept soundly for five hours then woke refreshed to a new day.

How a Caregiver Processes

Something was there, deep within me. I had no idea what it was, but it was troubling, causing some anxiety. This sort of thing has happened with me in the past -- being anxious about a mysterious element in my life, not knowing what it was but knowing I must call it to the surface of my consciousness so I could see it and meet it and deal with it. If I didn't discover it, if I let it be, it would become infected, spread throughout my psyche, and disease all aspects of my life.

I blocked out two full days on my calendar with the intention of staying quiet, being relaxed and open to allow this new element, this new issue, to reveal itself. And I sat with my anxiety. I sat with not knowing. I sat with my tears. I sat in love.

I meditated. I watched HGTV and the Food Network and Say Yes to the Dress. I wrote in my gratitude journal. I listened to music. I did some art. I wrote. I read. I cooked. I thought. I answered phone calls from friends and chatted with them. I sat for hours, looking at the wall, gazing out the window. All the while being with my anxiousness, being content with it, and asking this troublesome element to show itself so I could acknowledge it and love it, accept it into my life and then take whatever action would be appropriate.

Finally, in the late afternoon of the second day it came to me. It came to me not by way of introduction. It didn't say to me, "Hello there. I'm what's been bugging you." Quite the contrary. It came to me as the solution to what had been bothering me. It came as a gift from my soul.

Before the solution came, I had no idea what the troublesome element was. Neither did it matter because when the solution arrived, it was an action item for me to complete, as is usual in this sort of situation.

Now, I'm not going to tell you what the action item is just yet -- it's simply too private, too confidential. However, I will probably reveal it in Romeo and Juliet in Dementiaville: the Book. So stay tuned . . . and sorry 'bout that.

A Caregiver's Release and Gratitude

Debbie sat on the floor next to me in the back of the room by the soundboard. We were nearly done for the day, and I was getting a head start at packing up, listening to the music playing during our break. It was day two of a two-day spiritual course and event I was helping with, that I regularly help with.

"I took the rose petals," Debbie said, "from the chairs for the cosmic beings yesterday and put them all around Romeo's photograph on the alter. It's so cute."

I wanted to see it. I gave her a hug, took a few deep breaths, and walked to the alter at the side of the room where I placed the photo earlier in the day. The white rose petals framed Romeo's face and gave him a playful, loving aura, like a sweet Santa Claus, a woodland Pan. It made me laugh.

I continued to chuckle inside of myself and stood staring at the photo, spontaneously connecting with Romeo's spirit, his soul, again, as I had been doing on and off throughout the day. I remained standing, gazing at the photo, the rose petals, the candles, feeling Romeo's presence and the Presence that is always there no matter where we are. I turned quiet and serious.

I told these two Presences, "You know, Romeo has been struggling lately with the fact that his dementia is now so severe that I can't take care of him any longer, that he has to live in a nursing home. The struggle consumes his days. He is suffering because of it. He doesn't want to suffer. I don't want him to suffer. Our friends and family don't want him to suffer. Please help him to surrender, to accept what is. Please lift his suffering." And I cried.

My tears flowed freely. I don't know how long I stood there, my love magnifying while the emotions cranked up, skipped to a higher level. I let them. The song playing now was Kabir's Song, by Snatam Kaur:

Oh, my Soul, you come and you go
Through the paths of time and space.
In useless play you'll not find the way
So set your course and go.

Sing such a song with all your life
You'll never have to sing again.

Love such a one with all your heart
You'll never need to love again....

Walk such a path with all of your faith
You'll never have to wander again...

Breathe, my Soul, breathe, my Soul,
Breathe from the quiet center...

I continued to stand there, crying and talking to the Presences. Soon, a physical presence, standing behind me, arms around me, holding me and holding the space for me. It was another friend, Mitch, allowing me to do this, to release, to talk with the Presences. His grace, his attention gave me the space to accept the magnifying love of the Presences that came to me in wave after wave of energy.

That day, yesterday, was large and full. Many people -- some of them not really knowing how much they've helped -- came to me with words that I needed to hear, with hugs that I lapped up, with a simple presence that I leaned on. Dear friends -- Debbie, Matt, Mitch, Dan, Regena, Nancy, Kristi, Kathryn, and many, many others throughout the past few months -- your steady support, your understanding, your spirit means more to me than you can ever know. I have so much gratitude in my heart for all of you that I don't know what to do with it. It overflows and releases in the form of my tears. I love all of you deeply. Thank you. Each of us travel a long road, and we all feel the strain of the journey. Bless each of you.

Here is part of Kabir's Song, by Snatam Kaur.