Behavior Changes and Dementia

Romeo is upset with me. I know it's his dementia speaking. He would never have said the things he did, would never have acted like this, before dementia. He is upset that I'm not with him all day, every day. I can't be. Life pulls me in a number of directions, like it does with most of us. He doesn't get it, doesn't understand.

Right now, Romeo won't let me touch him, won't let me hold his hand. I tell him that the main purpose in our marriage, the reason we are together, the main reason we've been together all along, is because of our mutual commitment to the cultivation of our hearts, to spiritual awakening. He agrees. He is warming up to me.

I take his hand, and this time he doesn't pull it away. I tell him that I'll be with him always, that I am completely dedicated to him, that I am steady and unwavering in my commitment to him. Romeo needs this kind of reassurance from me regularly, and I give it often and freely, sincerely, urgently. He understands better when I stress the urgency of it. It seems to wake him up, to bring his attention back to the room, to make him think. He knows. He understands now.

I also know that he'll probably forget we ever had this conversation. He'll bring it up again -- his complaints about me not being there enough -- and we'll act the entire scene over again using much the same words. Again I'll tell him how much I love him, how important he is to me, how nothing will drive me away when he is expressing intense emotions. I tell him how I will stay with him -- in his face, breathing and present, giving him love in whatever way works to reach his heart.

He nods, he knows. His life is what it is right now. It can be nothing else. My life is different than his. It, too, can be nothing else. He nods, he knows.

It's late. He's tucked into bed, nice and comfy. I move my chair closer to his bed and in a soft, low voice, I sing to him:

Altering the Caregiver's Roses

Still putting fresh flowers in Romeo's room at the nursing home. His are fresh yet from nearly a week ago.

Still putting fresh flowers in my bedroom. Today, roses. The symbol of love, the soul, the heart. The offerings of a pure love. This time I chose white roses. White = even more purity of love. White is for the moon, the feminine, daylight, the Cosmic Egg, milk, images of the future, the promise of awakening. White is for promise and potential. This is what my tired caregiving soul needs right now. White to soothe the spirit. A shower of white roses.

Still, the artist in me wants to do something creative with those white roses, to do something with them to make them mine, make them different. Attach them to a canvas splattered with neon paint or to some three-dimensional object that suggests something new, something never before created. The artist in me wants to somehow alter the white roses so they aren't so darn . . . white.

The Tea Closet: Before and After Dementia

Before I met Romeo, I never had more than four or five boxes of different types of tea in the house. Then Romeo moved in, bringing with him more tea than I'd ever seen in one household. He could have opened a tea shop.

He had every brand I had ever heard of and many I hadn't. He had bags of tea, boxes of tea, loose teas, herbal teas, black teas, green teas, white, red -- everything. And he drank it all, five or six cups a day.

Romeo can drink only herbal tea now. I prefer nothing but. As a result, my pantry overfloweth with tea that we won't drink. I count no less than 30 boxes all together, most of them already opened. So what to do with the tea we can't drink? Can't donate opened boxes. Too much tea to keep on hand for guests. And neither am I able to create enough art pieces to use up all the tea -- yes, I've sprinkled loose tea on a few canvases. Spices, too, as well as dirt and flour and yeast.

In any case, I'm sure I'll figure out what to do with all the tea. For now, perhaps I should be thankful that Romeo doesn't have a taste for something more exotic -- like eye of newt or monkey brains.

A Caregiver's Spa-ahhh Break: Part Deux

It's late afternoon and I'm headed to get a massage. Ahhhh, mahhhsage. When I arrive, there's a little surprise for me. A foot bath! Large copper bowl, plenty of room for feet, bath salts, flowers, warm water. Add two feet...mine. Ahhh.

While soaking, pick a card from an offered deck: Goddess Guidance Oracle Cards. Cards face down, no looking. As fate would have it, I chose Diana. On the card is written: "Focused Intention. Keep your unwavering thoughts, feelings, and actions focused on your target, and you will make your mark." Good. What is my target, again?

One of the meanings of this card: "Know what your priorities are and take action on them. Take control of your schedule." Yes, that's what I have to do, what I haven't done. Time to do that. First there's time with Romeo at the nursing home, and now there must be more time for my other passions. Walking, writing, reading, qi gong, doing my art, playing my djembe. It all helps to energize me, to heal me, and it's so much FUN. Need fun, need more fun. What happened to the fun? Where did it go? Yep, gotta put all of it back in the schedule.

Next, one blissful hour of deep tissue massage, essential oils, hot towels substituting for hot stones, better than hot stones. My physical body silently crying out in pleasure while my metaphysical body expresses it in the loudest voice it's ever used. Almost as good as sex. Don't know if I'm lying on a table or floating on a cloud. I am alive, right? Doesn't matter. Nothing matters. Good lord, I needed this.

Almost abruptly, too soon, the hour is over. I have to get up? Get dressed? Leave? Go out there -- into the world? Walk? Drive? In this altered state of consciousness? Really?

I take my time. Drink the entire glass of water handed me. Find a mirror so I can put my necklace back on -- tricky clasp. Brush my hair -- it falls where it wants, parts of it dampened with essential oils. Wash my hands with lemon verbena soap, splash a little water on my face. I'm coming back, slowly.

At the front desk, I chat with one of the spa's employees and tell her a brief version of my life taking care of Romeo. For several years, she took care of her father, who also had dementia. So good to come across people who really understand what it's all about. We, two strangers united by the caregiver experience, embrace. And now I am grounded enough to leave.

A Caregiver's Spa-ahhh Break

Aaahhhh. Doesn't seem like much, but that spa pedicure and manicure . . . heaven. The foot massage, the leg massage, and then the hand and arm massage. Sooooo good.

I must have needed it badly, it felt so good.

Aaahhhh. Relaaaax. Refresh. Rejuvenate.

I gotta do this more often.

Indeed.

Gosh, it's good.

Rest the mind, rest the body, enter inner peace and tranquility and silence. No worries to sap my energy. Find the place where I reside, in the center there, in the center of the center of the heart. Breathe into it, deeply. It expands, this heart of hearts of mine. It is able now to give back, once again.

I gotta do this more often...

Romeo Plays the Piano in His Nursing Home

I don't put boundaries on myself
when I sit at the piano.
-- Vanessa Carlton

I wheeled Romeo into the activity room, right up to the piano, and set the brakes on his wheelchair. "Will you play something for me?" I asked.

Romeo grew up playing piano. He took lessons until he went away to university. He enjoyed it and was, apparently, quite good. He loves classical music. His favorite composer is Beethoven.

But, until now, Romeo would never play the piano for me, not even a keyboard. He said that he couldn't remember how to play anything, couldn't remember any chords. He wouldn't play for his own enjoyment, for fun. He wouldn't play for the sheer creativity in it. And he wouldn't play for the exercise it would give his brain.

Romeo couldn't get past the idea that he thought he wasn't good at the piano anymore. He was hung up in grieving for the pianist he once was, hung up in sadness that he didn't keep up his playing, hung up in fear that he was no longer good at the piano. This has been going on since we've known each other.

Until now. Without asking, I gently placed him in front of the piano and asked him to play. He smiled, raised his arms, plunked his fingers on the keys, and played for a few minutes. I don't know what he played, he doesn't know what he played. But he played. He played. And he said he will play again.

And the fear that he was experiencing? Gone, apparently. Gone for good? We don't know. Gone because of dementia? Possibly. My little wish is to hear Romeo play often. The next step for him and the piano? I'll bring some sheet music from home, place it at the piano in front of him, and see what happens.

The Fool's Journey With Dementia

Fear Not.
What is not real, never was
and never will be.
What is real, always was
and cannot be destroyed.
-- Bhagavad Gita

Some mornings I'll pick up one of my tarot card decks, ask it to remind me what I need to remember that day, and choose a card. Each time I've done this, a nugget or two of juicy information I probably would not have thought of on my own surfaces to guide not only that day, but the others that follow.

Today's card is The Fool. The photo at the right shows The Fool card from the Rider-Waite tarot deck. Although there are hundreds of tarot decks (if not thousands), the R-W is commonly used to depict the symbolism of the tarot. Many decks are based on the symbolism in the R-W.

But this isn't a blog about tarot, so I'll cut to the chase and tell you what The Fool told me. It relates, of course, to living with Romeo's dementia. I give much of my time to Romeo. I do it because it's required of me, because I want to, because I enjoy being with Romeo, because I want him to be as content and comfortable as possible, because what we have together goes beyond common romantic love, beyond a typical husband/wife relationship.

This journey with dementia that we're in the thick of is the major theme in both of our lives currently. It is quite likely our lives will go on this way for some time yet. Whether or not it does, the longer and further we travel the road, beyond the gates of the city, beyond what is generally considered a life of normalcy, the more Romeo and I must fly by the seat of our pants.

The Fool, you see, represents the both of us, Romeo and Juliet -- not just Juliet, not just Romeo -- but the two of us, each as separate Fools, as well as the two of us combined into one Fool. The Fool reminds us that this dementia trip is no ordinary journey. We are called on to live in a place where anticipation is the norm, where not knowing what will happen next or when it will happen is standard operating procedure. We are called to invoke our courage, to live in a place without fear, to live this wonder tale with joy and gratitude.

As Romeo's dementia progresses, we travel with everything we need already in our possession: courage, love, ecstasy, wonder, intuitive guidance, creativity, innocence, trust. The progression of Romeo's dementia, the fact that I can no longer care for him at home, calls him to draw on each of these characteristics constantly (if he can remember) as he goes about his day. Having dementia is difficult for him.

Romeo's dementia likewise demands that I, as Romeo's caregiver and advocate, continually come from the essence of who I am to stand up for Romeo each moment of every day since he cannot, to love him for who he is (for he is not his dementia), to live our lives together, and to live my own life as well, separate from Romeo. To live with wonder, with ecstasy, without guilt.

It also demands that I ride the waves of creative energies coming my way on the crest of this wonder and ecstasy, that I transform it and transcend it, that I travel without looking where I'm stepping, trusting that a little nip at my heels will be enough to warn me of any impending danger in time to act. And to do it all alone.

As serious as it is to live with dementia, to be a caregiver for someone with dementia, there is much living to be done within it. Romeo and I are on an accelerated journey to...somewhere.

Rotten Bananas in Dementiaville

See the bananas pictured to the left? You'd probably use them to make banana muffins or banana bread, maybe banana pudding. Still others may throw them away.

But not Romeo. Nope. He'd let them sit for three or five more days until they became even blacker. Then he would put one on his breakfast cereal and eat it. He says there is much more nutrition in what I would call a rotten banana. Maybe there is. I haven't researched it. Does anyone reading this know what, exactly, is more nutritious about a rotten banana?

Romeo insists on having his rotten bananas, so I buy a bunch and let them go off (go off: another British term I picked up from Romeo) at home before I bring them to him at the nursing home. I posted a sign in his room, near the bananas:

Attn: Nursing Staff
Please send a banana with Romeo
to breakfast each morning
DO NOT THROW AWAY ANY BANANAS

His rotten banana habit is an oddity. I've overheard some of the staff members talking about it and giggling as they walked down his hallway. Romeo and his rotten bananas. The secret is out. Bananas are inexpensive, and it takes only days for them to go off. And it makes Romeo happy to have them. There's a bit of a trick to keeping them coming each day for him, but I'd do almost anything for him. Even touch a rotten banana. Eeeewww!!!

A Call From Romeo in Dementiaville

My cell phone rang, and I didn't recognize the number on the caller ID. "Hello?"

"I love you."

"Romeo?"

"Yes...I love you." His voice broke, as if he were about to cry. I was concerned.

"Are you okay?"

"Yes...I love you."

"Oh, my sweet man."

"And I want to tell you something else. I want to tell you, Juliet, that I love you inside and out." Another break in his voice, caught up with emotion. "Where are you?"

"I'm waiting for the SUV. It's in for an oil change."

"Oh."

"I'm coming to see you after it's done."

"Oh. The reason why I said I love you inside and out is because..."

More cracks in his voice, emotions seeping through, and now my eyes wet.

"...you know that I love who you are as a person, the inner you."

"Yes."

"But I also want you to know that you are beautiful on the outside, too. I love you."

Tears from both of us now.

"Romeo," I said while laughing and crying at the same time, "do you think we'll ever be able to tell each other how much we love the other without crying?"

"No." Laughter and tears from him now. "I'll see you in a little while, then?"

"Yes, Romeo. In a little while. Until then, I love you."

Laughter now from the both of us. Laughter and love, from the both of us, to each other.

A Promise Broken Because of The Effects of Dementia

Earlier in the year, before dementia got the best of Romeo, we decided that this is the year we would see Paul McCartney in concert. I promised Romeo that we would go -- no matter what. At the time, little did I know that "no matter what" was to become unthinkable, utterly un-do-able.

When I heard that Paul would be in Denver on July 17, I went online immediately and bought two tickets, knowing that Romeo could not come. But before that, I struggled -- do I get tickets, do I go to see Paul without Romeo? And what would Romeo say when I told him, how would he feel? Do I not go at all?

Perhaps another woman would not have gone. I chose to go. After all, it's PAUL McCARTNEY. I've waited 46 years for this, and Paul isn't getting any younger either. So of course I was going to go. It was an easy decision, but it wasn't so easy to reconcile, to make peace with the fact that Romeo couldn't come, that I had to break a promise I'd made to him, that we couldn't be together for the concert.

Why couldn't Romeo come? What exactly is it about this concert, or any such event, that Romeo wouldn't enjoy? The answer, simply, is: all of it. Every piece, every detail, about getting him there, to being there, and getting him back afterward, would have been a major production.

Perhaps the easiest details to arrange, but the most costly, would have been transportation. It is impossible to get Romeo into a car (or SUV, in our case). We would have had to hire a van equipped to transport an individual in a wheelchair. The van would have to have the proper belts, straps, and fasteners to secure Romeo sitting in his wheelchair. The cost would have been beyond my budget.

Next in the easy detail department: we would have had to purchase handicapped seating for the concert. Easy enough, except they were sold out when I checked.

Finally, the main reason why I thought it best that Romeo not accompany me to the concert is perhaps the most hidden to those who have never been caregivers, never been around someone with dementia. Simply, it is that Romeo (and many people with dementia) would not have been able to tolerate the noise. It was going to be loud. Noise is bothersome to him, where it never used to be. He often doesn't want to listen to classical music -- his favorite, or what was his favorite. At Paul's concert, even with everyone in the stadium singing along with him, we could still hear Paul loud and clear. It was high energy, high noise, the entire three hours. Romeo would not have made it through 30 minutes of it, let alone 10 minutes.

For the past two years or so, Romeo hasn't done well attending events. He usually doesn't make it through any movies we go to (we stopped going). Last summer, we had to leave during the intermission of a performance of Shakespeare's The Two Gentlemen of Verona. This past spring, Romeo could hardly tolerate something as low-key as sipping tea in a coffee shop with conversation and overhead classical music for 40 minutes. No, as much as he would have wanted, he could not have made it through Paul McCartney's concert. I was satisfied with that decision.

But after the relatively easy decision, I did not anticipate what came up next. Huge sadness and near-bottomless grief. It weighed me down for days. Romeo couldn't come to the concert with me. I cried, I fretted, I felt guilty, I cried some more. And then it was gone. It had passed, and I was okay.

Earlier this year, in the spring, when the weather was nice, I took walks alone in places where Romeo and I would always walk together. It felt odd to be there without him, but I never cried or worried or felt guilty. This walk, I knew, would be just one of many without him. It foreshadowed other routines and other occasions and events that I would be doing or attending without Romeo. But this Paul McCartney concert...it involved me breaking a promise to Romeo. Something I'd never done before. And hoped I would never have to do again.

So what did Romeo think of all this? What were Romeo's feelings toward not being able to see Paul McCartney? For all the crying and fretting and worrying and guilt that I felt, it was a non-event for Romeo. It didn't register on his emotional scale whatsoever. He had forgotten we had talked about going to see Paul this year. He had forgotten my promise that we would see him this year, no matter what. And the day after the concert, he had forgotten that I had gone to it until I reminded him. I talked about it a little, and Romeo listened intently, smiling. He was happy that I had enjoyed myself. And after a minute or two, he asked me if there was any more chocolate in his room. Ahhh, how he makes me smile.

These songs are for my love, my amazing Romeo:

Inbox Q and A: What Does Romeo Do All Day in the Nursing Home?

From time to time, Romeo and I receive questions from family, friends, acquaintances, that are good to answer on this blog because: (1) a number of people ask the same question, and it's easier for us to give one answer; and (2) it's simply good, educational material about dementia. Our intention is to open up the world of dementia to you, to help you understand what you would only know if you spent a few days with us, if you were to actually see and experience what it's like living with dementia.

The question we'll answer today is:

What does Romeo do all day?

Good question. Although dementia limits him, he feels that his days go quickly. First, there are the routines: the nursing assistants get him up and going somewhere between 6:30 and 7:00am. Breakfast is at 8:10am, lunch at 12:10pm, and dinner at 6:10pm.

Throughout every day and evening at the nursing home there are a variety of activities Romeo can participate in if he wishes. He does not choose to participate in much, and I see where he's coming from. Most of the residents are 20 years older than he is, so the activities are geared toward them. But there are exercise classes that he likes to go to, drum circles, musical performances, and some games.

In addition, one of the recreational coordinators comes by every day or two and chats with Romeo and wheels him around -- outside if the weather is nice -- and will also get him up and walking. Twice a week, Romeo receives a maintenance type of physical therapy, where he is walked until he tires. Sometimes it's only 50 feet, sometimes 500. I also get him up and walking during my daily visits.

Visitors are few and far between for him; most people don't like nursing homes, I'm guessing. But I am there every day, usually for four to six hours. Sometimes less, sometimes more. Each day he asks that I bring him steamed soy milk and an oatmeal raisin cookie. I read aloud to him, and we discuss what we've read. And we talk...about everything, as we have done since we first met. Occasionally he wants to hear some classical music, so I'll pop in a CD and we'll listen to Mozart or Bach for a bit. He also enjoys The Essential Snatam Kaur: Sacred Chants for Healing. And we have watched two DVDs: Deva Premal and Miten in Concert, and Earth Drum Visions featuring the music of David and Steve Gordon.

As a young adult, Romeo taught Transcendental Meditation (TM) and has since been a lifelong meditator. Until now, that is. He feels that he doesn't need to meditate anymore because there's nothing to meditate on. He meditated daily until four or five months ago. And the reason why he doesn't meditate anymore? He says that he has come to the end of the road and feels that he doesn't need to meditate anymore. His mind is blank, and he likes to hang out with his blank mind. Romeo believes that during the time when he has no thoughts he connects with the Universe, the Divine, Existence, God, the Presence, whatever you want to call it. He says it's a peaceful place to be and the time passes quickly.

Even so, he still has occasional thoughts. He often wonders what happened to various friends. He wonders what he is doing living in a nursing home. Thinking about this is depressing to him, so at that point he goes to sleep. He also says that he thinks about me, his Juliet, frequently. He wishes we were together more. He misses going out to tea, driving to the mountains, taking long walks, being together every minute of every day.

And that is a typical day for my Romeo.

The Arrows and Daggers and Golf Balls of Caregiving

Dementia, in addition to affecting memory, can often cause unusual behaviors. Romeo experiences this from time to time. Since he's been living in the nursing home, he has taken on a behavior not like him. I know it's dementia speaking and acting, that it's not him. Still, it's difficult.

Nearly every day in a week, Romeo will mentally "attack" me with arrows and daggers. It always happens at the top of my first visit of the day (since I live so close to the nursing home, I often split visits during the day). I never know who I will be greeted by on any given day -- my sweet Romeo, or the attacking marauder Romeo.

The sweet Romeo will smile when I first walk in his room. He'll hold out his hand for me to take, and we'll sit quietly for a few minutes. The attacking Romeo is quite different. He will stare at me with anger in his eyes, propelling the poisoned arrows and daggers launched toward me. When this happens, my heart literally sinks to my stomach, and I close my eyes for a moment and direct my breathing to my gut, where the emotional pain (his emotional pain or mine?) settles.

I sit and listen to his list of complaints. Some I can act on, most of them not. They are products of his dementia, misconceptions on his part, and logic is a language he no longer speaks or understands.

So I take his arrows and daggers, dissolve them, and get on with the day. I often feel like a golf ball hitting a steel plate at high speed:

The Long-Term Care Truth About Flying

"I wouldn't fly with you," said Romeo.

"What?"

"If you were piloting an airplane, I wouldn't fly with you."

We were reading about small planes, about how a non-pilot wife landed a plane when her pilot husband became incapacitated. A flight instructor talked her down safely, giving her instructions and encouragement the entire time.

"Romeo, if I had a pilot's license, you wouldn't fly with me?"

"No."

"Why not? I think I'd be an awesome pilot."

Romeo rolls his eyes and turns away.

"I never told you this because it never came up," I said. "But at one point in my life I wanted to learn how to fly."

"What happened?"

"Never got around to it. Just like I never got around to learning how to fence. At least not yet."

"Fence?"

"Yep, fencing. You know -- beat, lunge, perry. All for one and one for all."

"Oh."

"So why wouldn't you fly with me? I'm an excellent driver."

"Driving isn't flying."

"Well, no," I agreed.

"In an airplane there's no road."

It took me a few minutes to stop laughing, and when I did: "That should make it easier to fly."

"No, no, no." Romeo was frustrated. He wasn't able to articulate his thoughts. I still don't know why he wouldn't fly with me. Perhaps if I bring up the subject in a few days he won't remember the conversation and we can start again. Maybe he'll be able to tell me then. Maybe then he'll be able to find the words. But more likely, not. Ahhh, this is dementia.

Decluttering the Clutter of Memory Loss

Romeo says that because of his dementia, the things he uses routinely must be in plain sight. This includes toiletries. The counter by his bathroom sink is cluttered with numerous packets of dental floss, three different types of soap, an assortment of tubes of various lotions and creams, and three different toothbrushes, to name only a few examples.

What Romeo doesn't know (well, he does now) is that periodically, as the number of his lotions and potions grew, as they began to take over my half of the bathroom counter, I put most of them away in his glass-fronted cabinet. And why not? He would ask, "Have you seen my first aid cream?" I would lift it off of the counter and hand it to him. He was surprised, of course, to see that although it was right in front of him, he couldn't see it. So much for his argument that he needs things in front of him to find them.

Now that Romeo has been living away from home for two months, I am beginning to declutter his clutter. Plugging away at making life here simpler for me. There is a long way to go, but I did not begin with the bathroom.

The first job I tackled is the top of Romeo's dresser. This is a relatively easy task. Put books on the bookshelves. The list of titles tears at my heart:

• Evolve your brain: the science of changing your mind, by Joe Dispenza, D.C.
  

• Making a good brain great: the Amen Clinic program for achieving and sustaining optimal mental performance, by Daniel G. Amen, M.D.

• A better brain at any age: the holistic way to improve your memory, reduce stress, and sharpen your wits, by Sondra Kornblatt

• The brain trust program: a scientifically based three-part plan to: improve memory, elevate mood, enhance attention, alleviate migraine and menopausal symptoms, boost mental energy, by Larry McCleary, M.D.

Of course, nothing Romeo tried worked. As good as these books may be, the information in them is for people with normal-functioning brains, not for people with dementia. Romeo never understood that. Neither did a number of his friends and acquaintances who recommended the books. Reading the books and faithfully carrying out the exercises did not result in a better brain for Romeo, and his disappointment grew with each book he read, each exercise he tried.

The next step in decluttering Romeo's dresser top is putting away the CDs. Just a handful, really: Beethoven, Bach, Amici, Deva Premal, and a self-hypnosis exercise on dressing recorded several months ago by a friend especially for Romeo. Although Romeo saw no improvement in his ability to dress himself, I certainly did. I encouraged him to play it often.

Next to come off the dresser is a stack of handwritten notes and a notebook: random thoughts, instructions for writing memoirs, notes from the Brian Swimme discussion group we participated in for a number of years. These I move into the study, place on a bookshelf, waiting to be better organized once I start the detailed decluttering work in the study.

I find miscellaneous items: a magnifying glass that I put in his desk drawer, a flashlight that I put in the drawer of my nightstand, pens and paperclips and paperweights that go in the study, a purple speckled round box I painted for him a year and a half ago when I took my grandsons to a paint your own pottery place. There are framed photos of Romeo's spiritual teacher, Osho. Romeo does not want them on his nightstand in his room in the nursing home, so I put them in the study for now. Later I will have to decide -- we will decide together, when that makes sense -- what to do with his bric-a-brac in the study, what to do with his pens and books and bookmarks, the elephant statue, his tapes, photographs. I suspect that much of it will end up in boxes in the storage room. But for now, I want to see all of it in front of me. Romeo is still living, although we are not living together.

Lastly, a couple more things on Romeo's dresser: two decorative wooden birdhouses that he painted and decorated last spring when he attended an adult day care program. These I put in a place of honor in the china cabinet we use as a dresser in our bedroom, my bedroom now. And while I'm at it, I gently fold a few sweaters he haphazardly stuffed onto its glass shelves last spring. I'll take them to him in the autumn, when the air turns crisp and cool.

Ah, on the floor is the humidifier Romeo liked to run during the winter. Although there is a humidifier on the furnace, Romeo liked a bit more humidity. I don't need it, so I stash the humidifier in the storage room.

I survey my work. The dresser top is now clear, except for a lamp. Before Romeo moved in with me, there was no dresser there at all. Instead, a bistro table and two chairs with that same lamp. I consider moving the dresser out and bringing in the bistro table and chairs again. But no, the dresser will stay where it is. I need it for Romeo's out-of-season clothes. It stays.

Then I turn around and see on the narrow wall behind me -- the wall that signals the bump-out that houses Romeo's dresser -- I see Romeo's dressing gowns hanging on the hooks I installed on that wall. (An aside: this is the only evidence in my speech that I am married to a British gentleman. I now say dressing gown instead of robe.) He could never find his dressing gowns in the closet, so I consented to the hooks.

But now, I can't think of moving the dressing gowns, of removing the hooks. Too tired, too drained to deal with that now. Later, tomorrow, next week, whenever, I will put the dressing gowns in the closet. I will take the hooks down, spackle the holes, and finish the job with touch-up paint. But not now. Now I will sit silently for a while. Now, with the clutter gone, there is room, there is space for my sadness.

The Presence of a Caregiver and a Dementia Patient

It was morning, after breakfast, and Romeo sat stiffly on the overstuffed chocolate brown leather loveseat in the third-floor lounge. I, cross-legged with beige skirt draped all around, sat facing his side. Once again, we were the only souls in the room.

"Last night, as I was falling asleep," Romeo said, "I felt your presence with me, very strongly. It was gigantic. You were with me."

Romeo had not experienced my presence previously. But I knew what he meant. Even before Romeo was overtaken by dementia, before he lived in a nursing home, I could feel his presence with me when we were apart. Not always. But when it happened, it was an unmistakable experience. Unmistakably him.

A couple of weeks ago, while on a walk, I felt Romeo's presence. It was huge, perhaps because I was outdoors, and one can be very large out in nature. As I walked, his presence moved with me as if it were part of me. He was content, quiet, loving. It made me smile, and I "settled in" to the feel of the two of us moving down the path during that long walk.

I've also felt Romeo's presence while he still lived at home. The last time I felt him hovering about me, we were in two different parts of the house -- he in the bathroom getting ready for bed and me at my desk tapping away at the computer keyboard. Suddenly, very suddenly, I sensed a being to my right, in front of the fireplace. The presence was about 12 feet tall, and thin, almost like a stick. The presence was, of course, Romeo. He told me that he was just checking in on me, hanging out with me. Nice.

So now Romeo is sensing my presence with him. Good. Very good. This is perhaps a victory over -- or in spite of -- his dementia.

A Caregiver's Organic Changes at Home

"Romeo, things at home are changing slowly, organically since you don't live there with me anymore."

"What?"

"I mean that for starters, I've taken over the closet, since you don't need much space there anymore."

"Oh."

"I'm taking back the study, slowly moving my files and papers back into the big desk there. I had given you the study back in December 2006 and set up a small work area for me in the living room -- remember?"

"Oh."

"When you moved in with me in September 2005, we moved things around, combined two households into one, at my place."

"Oh, yes."

"Now I'm slowly moving things back to how they were before I knew you. I'm not making a conscious effort to do it. It's just sorta happening on its own. Because...well...because you're not there anymore."

He wipes away the tear running down my cheek.

"That's okay," he says. "I'm not here either."

"You're not? Where are you?"

"I don't know. Out there somewhere in the ethers."

Flowers All Around for a Caregiver

Since Romeo has been in the nursing home, I have seen to it that there are fresh flowers in his room. He loves them so, and he welcomes their color and fragrance in an otherwise dull room. I am happy to bring him joy in such a simple way.

Quite by accident, I also discovered since Romeo has been in the nursing home that placing flowers in my bedroom, the room that Romeo and I once shared, helps to fill the void he left there so suddenly. I find myself puzzled as to how this can be so. How do flowers take the place of a husband? How can they be so comforting, so calming and soothing to my soul?

The answer might lie in the traditional symbolism of the flower itself. No matter the type of flower -- whether it be orchid, iris, tulip, lilac, chrysanthemum, rose, daisy, carnation, sunflower -- each one is generally a symbol of the passive principle in nature. The flower itself resembles a sort of cup, a vessel for receiving organic elements such as sun, dew, and rain that are responsible for their growth and existence. Flowers rise out of the ground merely by accepting these elements. Their passivity yields their manifestation.

So too, I think, with my life and Romeo's as we live with his dementia. Romeo and I are passive receivers, chalices for what the Universe has handed us. We have no choice, we cannot change Romeo's dementia. We did not bid it. It simply grew, somehow, with sun and dew and rain.

And as with flowers, colorful and fragrant reminders of the mystery of life, Romeo's life and mine continue to unfold into the future. As each one of us knows where we are ultimately headed, Romeo and I know where this will end. The flowers in his room and the flowers in my room are constant reminders that there is beauty in passivity. The flowers remind us to ride the waves of dementia, the waves of life, and to stop often to take in the dazzling colors, to breathe in the wonderful fragrances, and to let it all be. There is much beauty and mystery in all of it.

The Love Dream of a Dementia Patient

Romeo had a "waking" dream, as he does from time to time. "It was about the stages of love," he said. "It was the most beautiful thing I've ever seen."

"Tell me about the dream," I said.

"I don't remember it."

"Tell me anything you remember, any small detail."

"It was beautiful."

"Yes?"

"It was about love in the spirit realm."

"Ah, not romantic love?"

"No."

"Agape?"

"Yes. It was beautiful. It's really all there is, you know, this love."

Romeo drifted off with his sketchy yet potent memories of the beauty of spiritual love, leaving me holding his hand and looking out to the darkening evening sky, grateful for his insights, his love, and the presence of his spirit. Always present with me, his spirit that does not have dementia.

"Agape," he said, "is more beautiful than romantic love. It prevails over everything."

Romeo is present whenever he speaks of spiritual matters. He's always right there, right here, on the topic. The dementia hasn't taken that from him. However, if the day ever comes when Romeo can't speak of such things, I know that his love, his spirit, which has marinated in love since the beginning of time, still remains. He's told me so, and I believe him.

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?