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's Birthday Gift

Romeo was in bed when I arrived this afternoon. He was awake, lying quietly, his bright and alert eyes scanning the room. He smiled when he saw me.

"Hello, my Love," I said, leaning over to hug him. "Would you like to get up?" He nodded, and I asked him to press his call button.

As we waited for assistance, I said to Romeo, "Sweetheart, you wanted me to remind you of something today."

"Oh, what?"

"You wanted me to remind you that today is my birthday."

"Today is your birthday?"

"Yes."

"Happy birthday, my dear." And he reached out to hold my hand.

Just then, one of the certified nursing assistants (CNAs) came to get Romeo out of bed and into his wheelchair. As he was standing, just before moving to his wheelchair, he asked me to come closer to him, to stand in front of him. I held his arms and moved closer as the CNA let go of him and backed away.

Romeo said to me, "Come here." He put his arms around me, and I held and steadied him as he worked to maintain his balance. He, arms clasped around me, pulled me closer into him. I could feel his heart beat, sending loving energy to my heart. We stood in that embrace for several minutes. I soaked it in, gave it back to him, circulated it, and put my entire body into steadying him whenever he seemed off balance.

But mostly, I soaked it in. Romeo is seldom in a standing position for any length of time. I hug him while he sits in his wheelchair. I don't remember the last time we embraced while standing, while on equal ground. This afternoon's hug will remain in my memory, the memory of my cells, for a long, long time. By now he has forgotten all about it. For me, it's the best birthday gift he's ever given me.

Romance in Dementiaville

I have found the paradox,
that if you love until it hurts,
there can be no more hurt,
only more love.
-- Mother Teresa

Romeo says that he thinks about me often during the day. Of course, I think of him throughout my day as well. But it feels sooooo good to hear him say that he thinks about how soft my skin is, how he loves to gaze into my eyes, how he loves the sound of my voice as I read aloud to him, how he loves my feminine energy and openness and vulnerability.

That Romeo can and does think of me when I'm not with him is a juicy raspberry to dementia. He remembers something, someone, me! He is clear about our love. He is secure in it. He is present in it.

On the flip side, we have both been hurt by our love. It hurts that Romeo is in a nursing home, without me. It hurts that I am out in the world, without him. He is afraid of what the dementia of his future will do to him. I am, too.

Because we love, Romeo and I, we hurt. Because we hurt, and because that hurt becomes so painful that it's hard to bear, it transforms into love. Romeo and I give each other love, we receive one another's love, and we both magnify the love we feel. We breathe it in and then magnify it out into the world. We stand on firm, fertile ground, rooted deeply into our beings, and we love each other, we love hurt, we love love. Not to love is unthinkable, painful. Being love is all we can do, and it is enough. More than enough. We cannot bear too much hurt, but there is no such thing as too much love.

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.

Feeding Time in Dementiaville - Part 2

Romeo complained today again about not being able to feed himself. He says he can't put food on his fork or spoon and lift it to his mouth.

"Someone has to feed me all the time now," he tells me. He is fine with this. He almost seems to be proud that someone must feed him now.

A few minutes later and I am able to slip away to talk to his nurse about this. In Romeo's private brand of dementia, once he stops performing an action (like tying his shoes), he loses the ability to do it ever again within a matter of weeks.

I visited Romeo at dinnertime last night, and I watched as he fed himself until he was full. Although I'm sure that Romeo can still feed himself and does, I am a ball bouncing back and forth between Romeo in Dementiaville and his nurse sitting at the desk.

"No, no," she says. "He tells us that he can't feed himself, but he can. I tell him that he can do it, and we leave him be. He feeds himself fine. He makes a little bit of a mess, but that's okay."

And I agree. We help him by doing whatever is necessary so he can keep his remaining skill as long as possible. Romeo's ability to feed himself will go away soon enough, even with this prodding.

Feeding Time in Dementiaville - Part 1

Dining Room Harem in Dementiaville

Romeo requested to be moved from the table where most of the male residents on his floor eat their meals. He said that they don't talk, they're grumpy, and they grunt like barnyard animals when they eat.

He found happiness at a nearby table with three women. He loves to sit with them, he says, because he likes to chat, and everyone at this table talks to each other and to him.

He jokingly refers to them as his "harem." They giggle at his every word, flirting like schoolgirls. They fuss over him, making sure he has everything he needs. They wipe up his spills and messes. I have seen one of the women propel herself in her wheelchair to a different part of the room to get Romeo what he wants. I have seen another of the women wheel her chair behind Romeo to fasten his "clothes protector" behind his neck. They will also hover in their wheelchairs outside the door of the dining room, waiting for him before they go in. He laps it up, of course, every bit of it. Who wouldn't?

It's no wonder he likes to sit at this table. Their attentions to him warm my heart. If I can't be with him every moment to take care of him (and I can't), it soothes me to know that he is attended to by these gentle women. Romeo has little happiness these days in his life with dementia. Wherever he finds love is more than okay with me.

Enlightened in Dementiaville

Romeo has been mistaken for an enlightened being, a spiritually awakened person. He is not. Hardly. But if you're sensitive, you can pick up that there's something out of the ordinary about him. Something loving, gentle, darling, deep, sweet, and beautiful about him. Something glowing within him. Something actually glowing him. Something within him that's reaching out to you, touching your heart and awakening it.

Many have walked past Romeo, not sensing anything at all. They joke and giggle in their contained worlds and carry on their conversations, not noticing him, not noticing the gifts he can't help but send their way as they pass. It doesn't matter whether they notice him. He transmits a dose of love to everyone near him. Their receiving it is not dependent on knowing that he's transmitting.

Romeo, enlightened? Probably not, but he might be closer than anyone I've ever known. He certainly has been my personal guru. He has always been my rock. He always will be, even while he lives in Dementiaville.

A Caregiver's Question

"Wherefore art thou Romeo?" is Juliet's burning question to the Universe. She asks why Romeo, her beloved, is a Montague to her Capulet. Why must they be in a situation where they must hide their love from their respective feuding families? Why must her beloved Romeo be of the Montague house? Why is he, of all men, her beloved Romeo? Why could he not have come from a different family? Why Romeo at all?

Another Juliet (me, Juliet Archer) also asks a burning question of the Universe and has asked this question numerous times throughout the time she has known her (my) beloved Romeo. It is simply, "What?" and always comes after an instruction, an urging, an impulse from the Universe. It goes something like this:

The Universe (patiently but firmly): Click on this link (the one that I'm making pulsate, see it?) for this online dating service.

Juliet: What?

The Universe (patiently but firmly): Click on this link (the one that I'm making pulsate, see it?) for this online dating service.

Juliet: Okay.

This started the process that brought Romeo and I together. We met through this online dating service, even though I had no intention of using such a service. The Universe urged me to join.

Then, when Romeo and I decided to meet in person, here's what happened as I drove to the coffee shop where we arranged to join each other in a cup of tea:

The Universe (patiently but firmly): When you see him, you're going to kiss him.

Juliet: WHAT!!!????

The Universe (patiently but firmly): When you see him, you're going to kiss him.

Juliet: Okay.

This is completely out of my range of behavior with someone I've just met.

But I did...I gave him a little peck on the cheek. Maybe it awakened a pre-lifetime agreement in him, a sign or reminder that we were to be together. Maybe he was simply shocked (as I was) that I did such a thing. In any case, the rest, as they say, is history.

On the second day, Romeo asked me to marry him. Even though I thought, "What took you so long?" the Universe stepped in to ensure its desired outcome.

The Universe (patiently but firmly): Tell him, "Without a doubt in my mind."

Juliet: What?

The Universe (patiently but firmly): Tell him, "Without a doubt in my mind."

It was true, and I did. We were married less than four months later. We knew it was meant to be, and we each were happier than we'd ever been before.

Nine months later, Romeo was diagnosed with dementia, and I railed against the Universe.

Juliet to the Universe: What!!!???? Dementia!!!???? What!!!????

The Universe: (silence).

Juliet to the Universe: What? I can't hear you. What!!!????

The Universe: (silence).

It was gone. That guiding voice, the Universe, was gone.

Juliet to the Universe: You abandoned me. You don't say anything anymore. What's going on? What? What? What?

The Universe: (silence).

My "what" questions continue. What is this all about? What is the purpose of this? What were you thinking to put us together for this? What were we thinking to get together for this? What will happen to Romeo? What will happen to me? What in the world? What for? What happens next? What do we do with this? What reward do we get for doing this? What can we turn this into? What changes will we see in ourselves? What sort of silly reality is this?

Questions are plentiful. Answers are sparse. Yet, we plod along, Romeo and I. We continue each day. I remain open to hear answers, even though there have been only one or two. One day Romeo and I will know more. One day, my "what?" questions will cease. But until then, I know that the next time the Universe speaks to me, it may be my turn to remain silent.

Feeding Time in Dementiaville - Part 1

Romeo began our visit with a heartfelt, matter-of-fact confession.

"I couldn't feed myself today," he said. "I couldn't pick up the food with my fork and put it in my mouth."

I looked at him questioningly, tilted my head to the right, and blinked a few times, wide-eyed. Shocked by another downturn of events that mark the progression of his dementia, I must have looked like a deer in the headlights.

"I asked someone to help me."

"You mean someone had to feed you?"

"Yes. I think this is bad news."

A few minutes later, I wandered out of Romeo's room and down the hall to get the "real" story from his nurse.

"I don't know what that was all about," she said. "He was feeding himself, using his fork and spoon normally, like he always does. Then all of a sudden, he said he couldn't feed himself, even though he was doing fine. Someone came over and fed him anyway, because he requested it." She ended with a shrug of her shoulders, obviously stumped.

That wide-eyed, deer-in-the-headlights look was back on my face as I headed back to Romeo's room. I didn't mention it to Romeo -- it's so much better not to because he usually forgets all about it, which is what happened this time.

Meanwhile, Romeo has been feeding himself like usual, without help. I'll say it again: dementia is a funny thing.

The Emperor on a Caregiver's Path

The universal order
and the personal order
are nothing but different
expressions and manifestations
of a common underlying principle.
-- Marcus Aurelius

You may recall from two previous posts that I sometimes pull a tarot card to help guide me through the day. Previous posts:

The Fool's Journey With Dementia

The Tower and the Caregiver

Today, the Emperor showed up.

Here are a few thoughts about what the Emperor symbolizes: authority, handling the material part of life, inner strength, manifesting creative ideas, creating order out of chaos, exercising authority, setting boundaries and working within a structure, analyzing and thinking rationally, making tough decisions, beginning and initiating new things.

These sound like great "qualifications" to include on a resume, but by showing up today, the Emperor reminds me that it's time to play an active role in setting my life in order. It's time to take control of my situation, put my life on a different course. Romeo's life in the nursing home is under control. His care happens without effort from me. I want to channel my newly-found time to creative, productive endeavors. It's time now to examine, perhaps to reaffirm, where my ambitions lie, to rediscover what I'm doing, organizing, building. Time to make decisions about my future -- a future that does not include Romeo. My work cannot include Romeo.

According to the Emperor, my vision of this new future includes translating my dreams into reality, acting on my decisions, and taking personal responsibility for all of it. I am driven to achievement, to working hard for whatever I determine to be the new course of my life.

The symbolism of the Emperor indicates this, and I also feel a strong intuitive sense of it. It is time to get to work, time to point my energy to the outside world, to give it the fruits of my caregiving experience. At this point, I'm not sure what that looks like, nor do I have much of a clue. I know only that I, like the Emperor, will follow up on these ambitions, will take an active role in shaping my future, and will do it with the true authority that is rooted in the wisdom that comes from my heart.

Everything Is Fine In Dementiaville

I arrived at the nursing home at 9:30 this morning for a visit with Romeo. It appeared to be one of his "good" days. He was alert, smiling.

"I want to tell you something," he said.

"Yes?"

"Before you got here, I had the most wonderful experience."

I nodded to urge him on, wondering if what he was about to tell me was another of his delusions, although a pleasant one by the way he looked this morning.

He continued, "I looked around the room. I looked at everything in the room, and..."

He was overcome by emotion, holding back tears, concentrating on continuing.

"And everything looked so beautiful."

His eyes were clear, his face glowed, he was moved, he was calm. His heart pulsated with love, and that love radiated outward. It met me. It went through me.

"Everything was so beautiful." He went on, "And there is more."

I looked at him quizzically, not doubting, but not quite grasping how this could be better. What more could this lovely man have to say? How could this experience be better than what he had just witnessed to me?

"Romeo, you clearly had a glimpse at a different reality. You were in an altered state, perhaps it is our natural state of consciousness. What could possibly be better?"

He smiled, leaned toward me, looked me in the eye, his spirit to mine, and said, "I saw all of the beauty around me, and...I knew...I knew that...everything...everything is as it should be. I knew that everything is right with the world. Everything is right with my situation. Everything is right with us. Everything is fine. Anything that happens is happening as it should."

Romeo leaned back. We held the gaze between us. All I could do was nod, agree with Romeo. Yes. It's all okay. All of it is fine. We are living the events in our lives, and everything is fine. We are in flow.

Beard Trim in Dementiaville?

Romeo says that the nursing staff is ganging up on him. They're trying to get him to have his beard trimmed. Two of his nurses have approached me about making an appointment for him at the nursing home beauty salon/barber shop to have his beard trimmed. One of his nurses actually made an appointment for Romeo, and he wouldn't go when the time came.

This is pretty funny to me, all these women trying to talk Romeo into a beard trim. Yes, his beard is a bit scraggly right now. Yes, he could do with a trim. Yes, it's been a lot worse. Yes, he realizes that his beard is a bit scraggly right now. Yes, he realizes he could do with a trim. No, he will not go to have it trimmed. And why not?

"I'll go," Romeo says with a grin, "when they stop hounding me about it."

A little stubborn? A little mischievous?

No. Just independent...still.

Love it! You go, Romeo!!!

Not Brushing Teeth in Dementiaville

In the past few weeks or so, Romeo has lost the ability to brush his own teeth. One of the nursing assistants does it for him every evening and every morning. This doesn't upset Romeo, not being able to carry out another routine task. And curiously, it did not upset me when I heard the news from his nurse.

As I've said before, what's most important to me is that Romeo is happy, peaceful, content. This means that when he doesn't react to losing an ability to perform a task, when he can't remember how to do something he always did previously, and when he doesn't react, when he carries on as if this new loss is routine, then I follow his lead. It's so much easier that way. And the easier life can be, the simpler it can be, the better life is in Dementiaville.

Memory Loss and Home

Romeo can't remember anything about the home we shared for nearly five years. That's okay. I didn't expect he would. Our five years together is a recent time -- and much of Romeo's recollection of it is gone.

In fact, Romeo can no longer remember anything about any home he's lived in, except for the house he grew up in. Those memories, however, are quite foggy as well. He caught a glimpse of the living room in that home and nothing else. However, with some thought Romeo was able to conjure the emotion of happiness, being a happy child growing up in that home. He remembers being secure and happy.

During our brief conversation about home, Romeo did not mention home as sanctuary, home as haven. No, Romeo is not a homebody. He is a wanderer, a traveler. He has no home, no place. He is not tied to any one place. Romeo has all homes, all places. And the only home he remembers is the one where he has spent the most time, the place where he began his life. That's all that's left, and that is enough for him. He's happy with those memories. Wherever Romeo finds happiness these days is a precious place, whenever Romeo finds happiness these days is a precious time.

A Caregiver's Walking Memories

Dear Romeo,

I went for a walk this morning, as I do regularly. But today I thought of you the entire rest of the day. I thought of how you loved to go for walks. I thought of how I love to go for walks. I remembered how we would go for walks together, how we would walk everywhere.

Our first meeting, we met for afternoon tea, sat and talked for a couple of hours, then you suggested a walk. That made me smile. We walked up and down the Boulder Creek path, sat on a boulder down by the water. How many times we've walked that path since, I don't know. Countless.

Since the very beginning, we held hands as we walked. That is, we held hands as you walked and I floated a few inches off the ground. I was elated to be with you. I wanted to hold your hand forever, to walk with you side-by-side forever. Our joy accompanied us on our walks.

On my walks now, without you, your presence sometimes pops in and accompanies me part of the way. Other times, I call up your presence and you stay with me a little while. But you always leave, and I finish the walk on my own, remembering how you loved to go for walks, how I love to go for walks, and how we would walk everywhere together.

A Late Walk
by Robert Frost

When I go up through the mowing field,
The headless aftermath,
Smooth-laid like thatch with the heavy dew,
Half closes the garden path.

And when I come to the garden ground,
The whir of sober birds
Up from the tangle of withered weeds
Is sadder than any words

A tree beside the wall stands bare,
But a leaf that lingered brown,
Disturbed, I doubt not, by my thought,
Comes softly rattling down.

I end not far from my going forth
By picking the faded blue
Of the last remaining aster flower
To carry again to you.

Kissing Goodnight in the Nursing Home

Last night I visited Romeo around his bedtime. I enjoy visiting him at that time of day. He's had dinner, he's been tucked into bed wearing clean pajamas, he's smiling, he's pleasantly tired, quiet, peaceful. It's as sweet as putting a baby to bed.

I moved a chair close to him, adjusted the hat he wore to bed to help him stay warm through the night, held his hand. He smiled, eyes closed. We stayed like that, silent, for nearly 30 minutes.

I thought how the dementia continued to change him. Day or evening, sitting up or lying down, his eyes were often closed. He might request a piece of chocolate. I'd open it and hand it to him. He'd try to take it from me, but his hand would reach, his fingers would open and close, not finding the chocolate. "Romeo, open your eyes," I'd say. When he did, he would inevitably find the chocolate. Romeo, open your eyes. I had to prompt him to open his eyes.

"I'd like to go to sleep now," he said.

I rose, moved my chair to the side, positioned the floor mat that would soften the blow if he were to fall out of bed during the night, and leaned over to kiss him on the forehead. He reached his hand out, grabbed something only he saw in the air, moved his hands to his lips, and kissed his own hand. He thought it was my hand he was kissing. I let him think that, reached out and patted his hand. He closed his eyes, still smiling.

I silently left the room, thinking to myself once again about the many faces of dementia, grateful that at least Romeo's gentle spirit is still present.

Sunblock in the Nursing Home

Romeo's nurse asked me whether he ever joked with people. The answer is...well, no, not really. He'll make a joke, he'll laugh at a joke, but since I've known him, he's never teased anyone or pulled anyone's leg. Then I asked her why she wanted to know.

"He asked for sunblock today."

"Oh, did he want to sit outside on the sun deck?" It was, after all, a gorgeous day.

"No." She hesitated and then said, "He said he was packing to go to the Bahamas and needed to take some sun block."

"Oh my."

"We thought maybe you were going to the Bahamas and he thought he was going, too."

"No, I'm not going anywhere right now." I had, however, planned a trip to India but decided to put it off due to various developments with Romeo and in other areas of my life. But certainly no trip to the Bahamas.

I said to her, "Well, at least it's a happy delusion."

She agreed.

Romeo hasn't told me about his upcoming "trip" to the Bahamas, and I never asked him about it, nor do I plan to. He may not remember, and my guess is that he probably doesn't since he hasn't brought it up. If I brought it up, he would immediately suspect strongly that there was yet another lapse in his memory, and that would worry him, cause anxiety. Sometimes in Dementiaville, it's best to let things be.

Lacing Shoes in Dementiaville

It was the New Year, 10 days into 2010. Romeo and I were preparing to leave the house for the day, for a day of fun and play, when he came to me, frustrated that once again that he could not tie his own shoes. For several months, he had been having difficulty with this simple task that he had been performing since he was a child, a simple task that you and I may hardly notice, a blip in our day, one of dozens of tiny chores we undertake and hardly notice as we go about our days.

I had tried to talk Romeo into getting a new pair of shoes, loafers, something he didn't have to tie, something he could simply slip into, something he wouldn't have to tie. So far, he hadn't gone for that idea. So far, he preferred the support of a lace-up shoe. He preferred that I tie his shoes for him.

On this particular morning this past January, Romeo pulled one of the dining room chairs from its place at the table and sat down, pointing his untied brown Rockports toward me. Like usual, I got down on the floor, bent over his feet, lifted the ends of the laces of the shoe on his right foot, and began to cross them to begin the tie. It was an ordinary, simple action. At least that's what you'd think.

As I began the tie on the first of Romeo's shoes, a flash of light came toward me, entered me through my head, moved throughout my body, entering every cell, corraling my attention. I noticed. As I tied Romeo's shoes, I stepped aside and let this mysterious light, this mysterious love, take over my body -- my actions, my thoughts. It moved my hands and fingers. It was in my mind. It WAS my hands and fingers. It WAS my mind. My body tingled with excitement and anticipation of the words I knew it would soon speak. I did not know what those words might be, and the few seconds it took before it began to speak hung beautifully thick in the air surrounding me, in the air and water that makes up my body. Every hair on me stood, waiting to hear as I manipulated the laces of Romeo's shoes.

The voice came. It said, "What an honor it is to tie Romeo's shoes for him."

Yes, I thought, this is truly an honor, tying Romeo's shoes. Yes, go on. I knew the voice had more to say, more it wanted to tell me.

It continued, "Many women, many men, do not get the chance, do not take the opportunity to do this for their loved one, to help them like this."

That's all the voice said. But it wasn't the voice's words that moved me. The words were a gateway, a procession toward the experience, toward the Experience, toward the EXPERIENCE. The words lead me forward, and I knew what it was trying to tell me. I Knew what it was trying to tell me. Every cell in my body was alive with knowing. Every cell in my body KNEW what that divine voice meant, who it was.

That divine voice is love, it is Romeo, it is the love that moves the universe, it is the love that moves through me, you, everyone, everything. It is the love at the heart of each one of us, the love that is each one of us. And that love is simply all there is. Everything comes down to love. When everything is stripped away, layer by layer, love is all that remains. When Romeo cannot tie his own shoes, it is love that asks me to do it for him, and it is love moving through me that does it for him. It is love that moves through me as I perform the mechanical steps to tie his shoes. It goes beyond being present with the task. It is feeling the love, the force that moves the universe, flowing through me, loving Romeo, loving shoe laces, loving the rhythm that makes up our days.

And on that morning, 10 days into 2010, I finished tying Romeo's shoes, rose from my place by his feet, noted the symbolism of shoes (representing the soul, the point of contact between Romeo's body and the Earth, a principle of reality), and let the voice's message sink deeper into my cells, and then back out again, into and through Romeo, into and through our home, out the door and into and through the world. That divine love continues to flow, and it continues to live and breathe us, to move the universe.

Night Sweats in Dementiaville

Last year, while Romeo still lived with me at home, we had a particularly rough summer. Specifically, he experienced night sweats. For no apparent reason, Romeo would wake up at 2:00 or 3:00 a.m., freezing. His side of the bed was soaked. Wet with his sweat. He became cold as the sweat cooled on the sheets, and this cold is what woke him. Then he would wake me.

Of course I didn't want him to sleep in his sweat, and I wasn't about to change the bed in the wee hours of the morning. So I had him move to my side of the bed for the rest of the night, and I slept on the couch.

In the morning, I would strip everything off the bed -- everything -- and wash it all, dry it all, then put it back on the bed. This happened nearly all summer for four or five days in a week. That summer, my life was laundry. That summer, Romeo had a rough ride.

Romeo's night sweats disappeared as quickly and mysteriously as they had appeared, and he hasn't experienced them since. Once again, I repeat what is becoming my mantra of wonder: dementia is a funny thing.

Consistency in Dementiaville

Another phone call from Romeo in the nursing home. He says, "There was a nice man who came to visit me. His name is Frank."

Frank is a very close friend of Romeo's. In actuality, the two of them have known each other for quite some time and have shared numerous adventures, laughs, talks, games, and tea. Beer too, I'm sure. Romeo has obviously forgotten his old friend.

Romeo continues, "I'm sure that in time, this Frank will become a very good friend of mine."

"Yes, it sounds like it. I'm happy you have found a new friend, Romeo."

"Frank says he will visit me every week, every Friday. Friday will be Frankday."

We both laugh at the thought of a new name for a familiar day of the week.

After our conversation, Romeo hangs up happy. I hang up smiling to myself, in awe of the consistency of Romeo's mind -- to have been good friends with Frank before dementia set in, and again now to reaffirm that relationship from Romeo's place in Dementiaville.

Bedtime in Dementiaville

Romeo goes to bed quite early. I phoned him (that is, I called the nursing station and asked someone to go into his room and call me back from his phone so we could talk) one recent evening at 6:45 p.m. He was already in bed and falling asleep for the night, agitated that I had called so late. I apologized and told him I'd see him tomorrow.

I planned my visit the next evening at 7:00 o'clock, aware that his new early bedtime may be evidence of the increasing march of dementia.

Romeo was tucked neatly in bed, wearing flannel pajamas and a woolen cap. I've always loved it that he always wears a hat to bed in the autumn and winter. Something old-fashioned and Victorian in it. You know, like in Clement C. Moore's poem The Night Before Christmas: "And Ma in her kerchief and I in my cap had just settled down for a long winter's nap." One of my favorite poems. I love that Romeo wears a cap to bed.

This evening, Romeo was peaceful, quiet, content. I sat in a chair at the side of his bed. I held his hand. I moved my other hand to cover his heart and left it there, feeling each beat, each of his precious beats, grateful that we had met. Recalling that four months before we met, he nearly died while recovering from open heart surgery. Again grateful for the gift of his life, grateful for knowing him, for loving him. Heart beat, heart beat. I felt his heart beat. Such a sweet soul he is.

With my left hand still on Romeo's heart, I took his left hand and placed it on my heart, held it there. I don't think he noticed. He was nearly asleep. I continued to feel his heart beat, willed him to feel mine. Maybe he did. After a minute or two, he breathed the breath of deep sleep, me still holding his hand on my heart and still feeling his. Peaceful, quiet, content. Aware of the lightness of life, the transparency of reality, the net of love that's gently wrapped around our beings, supporting us as we are hurtled through this universe.

I gently remove my hand from Romeo's heart and place his hand that was on my heart to his side under the blankets. He's still asleep, deeply asleep. I smile, reach to the sky, grab the passing clouds from the night sky, and pull them over him. A blanket of clouds. Not the cloudiness of dementia, but the dissolving clouds that symbolize the sacrifices of the sage, my Romeo, who renounces his mortal being to gain eternity. My Romeo. Good night, sweet love.

A Caregiver in the Middle

It's 10:00 a.m. and the phone rings. It's Romeo's nurse.

"Have you talked to Romeo today yet?"

"No, why?"

"Let me tell you what happened last night."

Dear lord, now what, I think. The story unfolds. From his bed, Romeo was banging on the walls, as usual, and yelled and screamed until someone came to help him. Of course he mistakenly thought his call light had been on for 30 minutes and that no one had answered it. When someone came, he let loose with his now usual round of name-calling and anger and frustration. And it took some time to calm him down, again like usual.

He insisted that he had been left in the shower and couldn't get anyone's attention to help him get out. He claimed he was abandoned in the shower -- all the time while he was actually tucked into his own bed.

Not really believing it, I asked Romeo's nurse, "Someone was giving him a shower at 3:00 a.m.?"

"Not that I know of," she said. "We don't do that in the middle of the night. But I'm going to investigate it just to be sure. If someone did leave him in the shower, they're in big trouble. I just wanted to let you know in case he tells you about this."

Fair enough. I cherish open, two-way communication.

A few minutes later, the phone rings. It's Romeo. He had told his nurse that he wanted to speak with me, so she dialed my number for him. The purpose of Romeo's call was to tell me about his shower ordeal the night before. It was the same story his nurse had told me minutes ago. I agreed with Romeo that yes, it was horrible that he was abandoned in the shower, that I would talk with his nurse about it.

Then Romeo complained again about how no one answers his call button during the night. For all the times Romeo has voiced the unanswered call button complaint to me, he has never once told me why he summoned help.

"Romeo, when you press your call button during the night, what do you need? What do you need help with?"

"Pain," he says.

"Pain? What kind of pain, where?"

"In my ankles."

This is the fist I'd heard from him of pain during the night.

"How bad was the pain and how long does it last?"

"Pretty bad. It goes on for hours."

"Does this happen every night, pain in your ankles?"

"Yes," he says.

"Okay. When we're through talking, I'm going to call your nurse and see if she thinks it would be a good idea if they gave you something for the pain before you go to bed. That way it won't wake you up in the night."

"Oh, that would be good," he replies with a smile in his voice.

We hang up, and I call back to speak with Romeo's nurse. I tell her the latest about the ankle pain. It's news to her as well. She agrees to give him ibuprofen at bedtime.

I ask, "Do you think that the ankle pain is due to Romeo's dementia, or might there be an actual physical reason for it?"

She refers it to Romeo's doctor, who will check it out.

It seems to take the two of us to squeeze a story out of Romeo, to find out what's bothering him. She has a fact or two, and I glean an additional clue or two from him. Then we talk and figure out the best thing to do for Romeo in that case.

As far as Romeo being abandoned in the shower . . . well, of course it did not happen. But what I told Romeo was very different from the truth. I told him I was as frustrated and angry as he is that this happened. I told him I was at a loss as to what to do about it. And then I "thought" of a solution. I offered to take the matter up with one of my spiritual advisers, and Romeo thought this was a splendid idea. I agreed to do it, hoping all along that Romeo would forget about it, that it would drop off of his radar, never to be mentioned again. So far, so good.

A Dementia Patient Bangs on the Wall

Often during the night, Romeo thinks he's pressed his call button when he needs something. He thinks he has done it. But the light isn't on, the nursing assistants don't know he needs them. He says that 30 minutes pass without anyone coming. That's probably true. And it isn't because they stay away on purpose. It's because his light isn't on, so they stay out of the room and let him sleep. They do, however, check on him and all the other residents periodically throughout the night.

Romeo says that when no one answers his call light, he does whatever he can to get attention. Banging on the walls with his fist is his favorite. He says he also yells and screams. Romeo has such a quiet voice and gentle disposition that I wonder how "loud" those yells and screams really are.

In any case, by the time someone comes, Romeo has worked himself into a heightened state of frustration and anger. He curses at the nursing assistants and calls them names I would not want to repeat. This behavior is not my Romeo. It's the disease. It's the dementia.

One of his nurses told me that it is quite an undertaking to calm him back down. They recommended a slight increase in his dose of antidepressant. After four days of mulling this over and more evenings of Romeo banging on the wall and calling people nasty names, I agree. It is not good for him to be so upset and anxious and frustrated.

All the while, I acknowledge Romeo's decline. I never expected such radical behavior changes in him, although it is common in dementia patients. I never thought that Romeo, my sweet Romeo, would succumb to dementia's rule. But it has happened. His symptoms progress.

Maybe now it will be easier to flow with whatever comes up. To make the best decisions from my center on behalf of Romeo. To take more long, deep breaths, and to let more long, deep breaths escape from my depths, releasing the toxic. Maybe now it will be easier to remain calm in the eye of this unpredictable storm that is dementia. It is only going to get more challenging.

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 and Her Papers

Any idiot can face a crisis - it's day to day living that wears you out.

-- Anton Chekhov

It's late, and I sit on the floor in the study, piles of papers surrounding me. There is mail to open, papers to file, files to make, papers I need to follow up with phone calls, and papers that must be shredded. There are papers having to do with Romeo's stay in the nursing home, papers from insurance companies, statements from financial institutions, bills, astrology charts, ticket stubs, schedules, and business cards.

I don't want to take care of any of it. I don't want to file any of it away. I've had it. I'm done.

I put on some music and lie on my back on the floor, on top of all those papers. And then I move my arms and legs as if I were making snow angels with all those white papers. They go everywhere. I don't care.

I sit up and look around me. Papers. I listen to the music: Dust in the Wind. Yes, how true. All we are is dust in the wind. And then I get angry at Romeo for getting dementia, leaving me to handle everything alone. And then I cry. In less than 10 seconds, it's over. I'm cried out. I get up, peruse the scene, take the music into my heart, laugh at the mess, and walk away, content to leave it all for another day.