Rest in Peace, My Sweet Romeo

Romeo, my beloved husband

November 23, 1944
to
July 26, 2011

I'm honored and humbled
to have spent the last six years with you.
You changed me completely.

Rest in peace, my sweet man.
We'll meet on the other side.

All That's Left in Dementiaville

It's late afternoon as I enter Romeo's room. He's lying in bed, as usual, eyes closed, breathing the gentle breath of sleep.

I touch his hand, his arm.

"Hello, Romeo. It's me, your wife, Juliet."

His eyes remain closed, but they flutter and a smile illuminates his face.

"Oh," he whispers, "Juliet."

"Yes, sweetheart, I'm here."

After a long moment he utters one word, "kiss," and puckers his lips. I move closer and meet him at the confluence of physicality and spirituality.

"Again?" He smiles, and I gladly indulge the two of us again.

Romeo settles into a peaceful doze, and I hold his hand and sit back to watch him in sleep and to wonder. When Romeo's suffering (his anger and frustration at not being able to function as he did in the past, before he had dementia) fades into the background, and when his mind lets go and he experiences himself only as a content and happy living being, when who he really is looks out of his eyes even as they are closed and communicates affection, what is that?

When Romeo's physical discomfort is not present, when his mental landscape is clear and devoid of disturbing images, when he is not comparing or judging the situation he is in, when it appears that he is simply enjoying the unfolding of life, what is that? When all the unpleasantness is stripped away, what's left?

I have my own ideas about what life really is, but what are your ideas? Caregivers, perhaps more than many other people, are in a position to see life both devoid of everything and full of nothing. And when life is at this unusual balance, when the fulcrum of life is not what we expect, when it is inherently not visible, what is that? Is it acceptance? Is it patience? Is it simply being? Is it grace? Is it love? When life is stripped of everything, what's left? A kiss from divine grace?

Contented in Dementiaville

As Romeo progresses deeper into dementia, he becomes agitated, confused, foggier. He is lost. He is not here, and he is not at peace. My main caregiving responsibility, my goal for Romeo, is to see that he is comfortable, content, at peace. If any one of these is absent from his experience, I feel it perhaps as much as he does, although I'm sure separate scales exist for the two of us.

On this visit, I greet him as usual. I touch his arm, softly kiss his cheek near his ear and whisper, "Romeo, it's me." Usually he opens his eyes, tries to get me in his radar. If he does, if he can see me and focus on me, his eyes and face light up with recognition and love, no matter whether his mental landscape is clear or foggy. On this visit, he is clearer than he's been in several months, and I melt into his gaze.

It's so much easier to be in acceptance when Romeo is "present." When Romeo is clear, it's so much easier to let go of the fact that he has dementia. It's so much easier to let it be when he is at peace. When Romeo is glowing with love, it's so much easier to be with his dementia. It's so much easier to focus on our separate journeys instead of our clearly separate destinations.

What unfolds now for Romeo is something I can only imagine. He's making this journey alone. Although I am there physically for him, I have no idea what he's experiencing mentally, emotionally. He can't describe it to me because his disease blocks his words. His mind doesn't bring them into focus long enough for him to verbalize his experience, and so I cannot be there for him on that level.

Romeo is completely alone, exploring unknown territory by himself. At least, that's what's happening as far as we know. But there is much we don't know. Romeo has one foot in this world and one foot in the other world. That other world -- is that his destination? Is that where he's headed? Is that where each of us is headed?

I've come to learn that letting go of my resistance to Romeo's dementia has allowed me to experience him and our relationship more completely. I've come to learn that by being patient, I can be more aware of the unfolding of the events occurring with Romeo's progression into dementia and to perhaps see them from a more encompassing vantage point, which enriches the experience. I've learned that being with Romeo's dementia helps to balance my tendency to worry about him, which in turn clears my mind to be able to see more options or possibilities or solutions. Allowing my mind to step aside reveals to me the gift of being with Romeo, as well as the honor I have of helping him through his experience of dementia. And that is huge.

Romeo has been sleeping, breathing the breath of contented sleep, for 20 minutes. He'll be napping for quite some time yet. I get up, move my chair away from his bedside, touch his arm, softly kiss his cheek near his ear and whisper, "Good-bye, Romeo. I'll be back soon. Remember, though, that I am always with you." He continues breathing his contented breath of sleep. I turn and leave the room, breathing my contented breath of life.

A Caregiver Reads: Healing Conversations

I wrote this brief book review for CARE Connections, a publication of Boulder County Aging Services, which gives Information and Inspiration for Caregivers. It appeared in the May/June 2011 issue.

Healing Conversations:
What to Say When You Don’t Know What to Say

by Nance Gilmartin

All caregivers, on a daily basis, encounter the need to communicate with others and themselves on a variety of delicate situations. Having a difficult conversation is one thing. Having a healing conversation, however, is quite another.

In a healing conversation, the object is to make a heart-to-heart connection that allows each participant to feel they understand the other, as well as to feel they are being understood. Sounds easy, right? Not even. Talking with others on this level requires that we do not judge them, aren’t out to rescue them, or aren’t trying to fix them. This can be a tall order indeed, especially when our topics of conversation contain emotionally charged content, as is typical in caregiving situations.

In Healing Conversations: What to Say When You Don’t Know What to Say, Nance Guilmartin guides us in having healing conversations in a variety of life situations, including a number that are relevant to caregiving. Following are some points that stand out.

Using the Rule of Six. Asking for help seems to be the number one place where we caregivers mess up. We simply don’t like to ask others for help. Yet, it is probably the most important thing we can do to insure the health of our loved one and ourselves. We cannot do it alone. The Rule of Six simply states that you must ask six people for help, not just one. Yes, SIX people! Guilmartin explains that the first person may be busy, the second might not want to get involved, the third may not be able to satisfy your entire request, the fourth may refer you to someone else, the fifth may not be able to do what you ask but can help in other ways, and the sixth may be the one who says yes. It amounts to casting your net further afield than you originally thought in order to catch the good fish.

Just How Do You Ask for Help? You do this by first making your own “wish list.” By spelling out and being clear about what you do and don’t need, you can make specific requests that others can understand and honor. Take responsibility for asking for whatever help you need at any given time. And if you can anticipate what you’ll need and ask for it ahead of time, the better the chances are that you’ll receive it.

I Know Her Name: Living with Alzheimer’s. As many caregivers know, we want to respond lovingly and patiently to our loved one with Alzheimer’s or dementia. They are oftentimes angry, confused, and unintelligible. The person inside is lost and trying to find her way. How do you help orient your loved one to the outside world? To their private world that only they can see? How do you compassionately help them without yourself becoming stuck in their dementia? The answer is that each moment, each situation is different and must be addressed as if it was a new situation -- and it is.

A Caregiver Colors

Why do two colors, put one next to the other, sing?
Can one really explain this? No.

-- Pablo Picasso

Sometimes I want to color. Sometimes I want to leave behind the thoughts and worries of my caregiving world with Romeo. I want to color. You know -- with crayons or markers, colored pencils -- just like when we were kids. The thick, dark lines beckon me to color within them while simultaneously tempting me to go out of their boundaries. The colors cry out, "Use me, use me!"

I go to the stash of coloring books kept on hand for my visiting grandsons, who have already outgrown the appeal of crayons (how did THAT happen so quickly?!). I find coloring books, sticker books, paint books full of images of fish, insects, dinosaurs, cartoon characters, cars and trucks. Nothing excites me until I notice what suspiciously looks like a coloring book hidden under a puzzle. And it is a coloring book. I had forgotten about this treasure. It's a coloring book of mandalas. A mandala is a complex type of drawing containing geometric shapes arranged in a circle and often framed within a square border. The mandala design is found throughout the world in various cultures, from the Far East to Native America.

I pull out the coloring book, turn randomly to a page, tear it out of the book, and place it on the table. Crayons, colored pencils, markers? Maybe all three, and maybe some glitter, too. I begin, gently tracing over the bold black lines with a bolder blue marker. My mind immediately begins to wander, relax, imagine, meditate. I am quiet, focused only on my task. The mandala is doing its job.

Unconsciously, I am searching for a quiet place where synthesis and driving energy are one, a place where my difficult caregiving experiences are neutralized, a place of peace where there isn't any trouble. I need a break. I'm looking for a quiet place where the disjoint and the conjoint, the diffused and the concentrated, the visible illusion and the invisible reality of my caregiving life exist together in harmony, a place where all of it makes perfect sense, a place where all of it can simply be.

While coloring the mandala, while filling in its various geometric shapes with different shades of blue and purple and green and yellow, I see that it, this mandala (and indeed, every mandala), is life abridged. At the center is divinity, the simple and naked truth. Moving beyond that divine place of quiet and knowing and being, the human psyche appears and reaches out in all directions. It becomes more complex, reaching an organic roundness, a wholeness I recognize as natural. The square or quadrant formation brings this realization into consciousness. I realize that the human psyche is enhanced by the divine center, as the divine center is enhanced by the human psyche.

Contemplation of a mandala (in this situation, the quiet coloring, contemplation, and worship of it), is said to bring inner peace. The swing from order and chaos and chaos to order in my life with Romeo is not a psychopathic symptom, but a loving contemplation of possibilities and probabilities and action and non-action.

In this act of coloring the mandala, I have once again found meaning within my life, realized its order, and am at peace. Viewing my work, the coloring of the mandala completed, I realize it needs something else, a final touch to finish it off. I grab a can of silver glitter hairspray and spritz it gently over the entire mandala. It's done. Not too much, but just enough glitter. Just enough to remind me that order and chaos and divinity are all the same thing.

For more on mandalas, see:
What Is a Mandala?
Free Mandala Coloring Pages

Fear of Abandonment in Dementiaville

Romeo lies in bed. He wrings his hands, furrows his brow.

"What's wrong, Romeo," I ask as I cup his hands in mine. Making physical contact with Romeo soothes him, and he stops the wringing and loosens his brow.

"I'm afraid."

"Of what, Romeo? What are you afraid of?" It's a gentle question, framed with soft intonations to help soothe him further.

I expect a long pause after my question as Romeo searched for the words to tell me. He often cannot think of the words to describe his thoughts, to name objects, to whisper endearments.

There is no hesitation now, however.

"I'm afraid you'll abandon me, that I'll never see you again."

His words are slow, deliberate, soft, to match his waning energy level. He does not look at me as he speaks, but then he seldom does. It's simply part of the disease.

I squeeze his hands as a gentle reminder that I'm still there, that I'm with him.

"I'll never abandon you, Romeo."

"Really?" His face brightens.

"Of course not. I visit you as much as I can."

"Juliet, it's been a long time since you've come to visit me."

"I was here yesterday, Romeo. And the day before that. And the day before that."

"Really?" His face brightens even more. A long time ago, when Romeo was first diagnosed with dementia, I made a vow to him that was probably more important than our wedding vows, and I repeated it to him now.

"Romeo, it's important that you know without a doubt -- ever -- that everything I say to you is true. I promise that I will always tell you the truth so you can know without thinking or questioning or wondering that you can rely on me."

"Oh, yes, now I remember you've told me that many times before."

I smile.

"Juliet, I am sorry that I forgot."

"Romeo, do not worry, and do not be sorry for anything. I know it's your disease and not really you thinking these things. I want you to let it go out of your mind, set it free, and know that even when I'm not here, I think about you. I don't want to abandon you. You're stuck with me."

I kiss his bearded cheek, and he smiles, loosens his hands from mine, closes his eyes, and is asleep within seconds.

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.

Links for Caregivers

I've added a page of websites that contain helpful information about caregiving.

You'll find a way to Links for Caregivers on every page of Romeo and Juliet in Dementiaville.

It's on the right, in the Pages section, just beneath
About Me and View my complete profile

Or just click here:
Links for Caregivers

Technical Problems With Blogger

Technology makes it possible for people to gain control over everything, except over technology.

-- John Tudor

Dear Readers,

Wow, what a frustrating couple of days it's been. I've been working hard on some new posts, only to experience problems with publishing them to the site, while others have disappeared from the site completely. This, I understand now, is due to technical glitches on the Google Blogger side of the equation. My apologies, and theirs: Official Google Blog: Blogger is back

I ask for your understanding and patience as Google takes the necessary time to restore my posts.

After Caregiving, the Laundry

I wrote this article for CARE Connections, a publication of Boulder County Aging Services, which gives Information and Inspiration for Caregivers. It appeared in the March/April 2011 issue.

For four years, I’ve been caregiver to my husband, Romeo, who suffers from dementia. And I’ve recently realized that my job as caregiver is temporary. One day my caregiving responsibilities will be over. One day Romeo will no longer need a caregiver. And this means that one day I’ll return to a “normal” life.

I have contemplated this new life sans caregiving. What will it be like? Will I spend my days falling into a black hole, right behind my husband? Or will my life be fuller, richer, than it ever was before, more than I ever imagined it could ever be?

Essentially, of course, the only difference between my current caregiving life and my future life without caregiving is that after caregiving, the only person I’ll need to take care of is me. And I’m used to that, right? After all, I’ve done a pretty good job of taking care of me while taking care of Romeo. Or so I am told. But is that really the only difference? Just because someone else takes over the caregiving role, or just because there is no physical body, no emotional body for me to take care of, does that mean anything? Will my caregiving mode suddenly switch off? Or will it be more of a gradual fading out?

When you’re a caregiver, your life is centered on caregiving, and only that. Caregiving becomes everything. You eat, drink, sleep, and breathe caregiving. Your every thought is about the person you’re taking care of, your loved one. Your eyes are on alert, always looking – is your loved one is safe, asleep, does he need something, is he somewhere he shouldn’t be?

When my caregiving days are over, what will I eat, drink, sleep, and breathe if it’s not taking care of my husband? What will I think of when I don’t have to think about my husband? What will my eyes see when I don’t have to watch for the obstacles that can hurt my husband, when I don’t have to see that he is awake or asleep, when I don’t need to know whether he needs something, when it isn’t relevant for me to see his whereabouts because he’s no longer here for me to watch?

Indeed, caregiving consumes one. It becomes your identity. Sometimes it feels that I am thought of as “that poor woman whose husband has dementia.” They recognize the self-imposed tunnel vision I’ve activated in order to take care of Romeo. I’ve given my life to taking care of Romeo.

Throughout each day while taking care of my husband, I become an extension of him. Because I know him so well, and because I care deeply about his happiness and comfort, I anticipate his words, thoughts, feelings, and desires. I play the game of “if I were in Romeo’s shoes, what would I want right now?” Perhaps this habit of mine, a way of being, really, is over the top. Some have told me I indulge my husband. And why not? There is so little he can control, so little he can do. You bet I’m going to do everything in my power to get him what he wants.

What will I do when my days of indulging him are through? Where will my enjoyment be directed then? At this point, there are more questions than answers.

As my husband’s caregiver, I live in his shadow. It seems that the attention of strangers, as well as friends and acquaintances, goes to Romeo first and then to me second, if at all. Their comments and inquiries are directed toward and about my husband. “How is Romeo doing?” they ask, anticipating an answer that’s as debilitating as his disease. Of course, I don’t mind their inquiries. On the contrary, I welcome them. Life right now is about Romeo. Completely. Every day that someone asks about Romeo, I make sure to mention it to him. Much of the time, he has no idea who the person is. He’ll ask, and I’ll tell him where he knows that person from. He’ll nod his head and smile. He enjoys being asked after. He is happy, at least for a short while, and any amount of happiness I can give him helps him tremendously.

What will people ask me when I no longer take care of Romeo? And, of more concern, what will I answer? What will life be like when my caregiving days are over?

The first answer that pops into my mind is that – wow – I’ll be able to go back to my old life. I’ll be able to go back to work. I can also get back to working on my art, my writing, and I can spend more time on my other passions, more time with family and friends. I’ll have the flexibility to go where I want and do what I want...just like before Romeo was diagnosed with dementia.

In short – and this may be no surprise to you – I realize that my life after caregiving will be no different from my life before caregiving. The only thing that will change, really, is my point of view. In “before caregiving,” I focused on me. In “during caregiving,” I focus on Romeo. In “after caregiving,” once again I can focus on me.

Ahhh, and here’s the nugget: my life as a caregiver (thus far) has changed me. It’s made me more understanding, more sensitive, sharper. It’s been a sort of painful yet blissful time that came with deep insights and that revealed my inner depths and affected my outer reality. It moved me beyond my usual perception of myself. Just like in the old Zen proverb, “After enlightenment, the laundry,” my future life will be “After caregiving, the laundry.” One reality does not shatter the other. One reality does not start when the other stops. While caregiving has changed me forever, I still need to do the laundry.

A Caregiver's Bill of Rights

When I first began to take care of my husband, Romeo, even before he was diagnosed with dementia, I didn't realize I was a caregiver. I thought that I was simply helping Romeo with things he could no longer handle himself. I didn't yet realize that his dementia would progress into something I wouldn't be able to help him with by myself, alone, at home.

No doubt about it. Caregiving is probably the most difficult job you'll ever have, the most difficult task you'll ever undertake. Yet, it is also in all probability the most rewarding. Whether or not you have come to the point of recognizing and labeling your caregiving role, you will discover that your job, this obligation you have undertaken, is best carried out with a "yes" attitude. By saying yes to being a caregiver to your loved one, you are equally importantly saying yes to doing all you can to take care of yourself. I reiterate: all caregivers are equally responsible for taking care of themselves.

I recently came across a Caregiver's Bill of Rights. It recognizes the humanity of a caregiver and gives permission for us to be fully human. Please know that you, as a caregiver, whether you are so new to caregiving that you don't yet know you're a caregiver, or whether you've been a caregiver for many years, are entitled to your own life, to acknowledge and fulfill your own needs. You are entitled to each of the rights detailed in these bullet points. Live your caregiving potential to its fullest and embrace these rights.

A Caregiver's Bill of Rights

I have the right . . .

• To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative.

• To seek help from others even though my relatives may object. I recognize the limits of my own endurance and strength.

• To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do something just for myself.

• To occasionally get angry, be depressed, and express other difficult feelings.

• To reject any attempts by my relatives (either conscious or unconscious) to manipulate me through guilt and/or depression.
  

• To receive consideration, affection, forgiveness, and acceptance for what I do from my loved one for as long as I offer these qualities in return.

• To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.

• To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my help.

• To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.

-- Author Unknown

The Caregiver as the Page of Swords

Make a proper investigation first.
-- Buddha

I hold the Rider-Waite Tarot Deck and ask, "What helpful information can I pass along to the caregivers reading my blog?" I shuffle the cards, cut the deck, run my left hand over the spread and intuitively pull the Page of Swords (also known as the Princess or Daughter of Swords).

The Page of Swords, I believe, describes in a nutshell the ideal caregiver . Each and every caregiver who does not have the qualities and attributes of the Page of Swords must, simply must, develop them -- and fast! -- to serve their loved one effectively, to give their very best, to make the loved one's difficult situation a little lighter.

Here is a sampling of what various sources say about the Page of Swords.

The Little White Book that came with the deck describes the Page of Swords:

A lithe, active figure holds a sword upright in both hands, while in the act of swift walking.

The Tarot Directory, by Annie Lionnet, spells out the message of the Page of Swords:

This card indicates that you will have to make some careful decisions that require clear thinking and level-headedness. It is important to keep a proper sense of perspective.

In Tarot for Life: Reading the Cards for Everyday Guidance and Growth, Paul Quinn says about the Page of Swords:

Keyword: Investigation
Being: Emotionally detached, intellectually engaged, intrigued, observant, inquisitive, skeptical.
Doing: Asking questions, grasping concepts, getting the facts, cutting through obstacles, holding your ground, striving for objectivity.

In Tarot for Yourself: A Workbook for Personal Transformation, the author, Mary K. Greer, describes the Page of Swords and asks urgent questions of us:

Seeks justice and truth. Cuts through depression and heavy, stormy thoughts. Takes risks with communications. Cuts through cloudy thought to get at the truth of the matter.

Questions to Answer:
What do you have to say? What fears must you face?

Sample Affirmation:
I face my fears and depressions and risk cutting through them.

I don't know what more I could possibly add to what these books reveal. I don't know of a more perfect card, or a more targeted message for a caregiver. Be an active and swiftly-moving caregiver. Keep your head about you when making decisions related to your loved one and always, always, serve their best interests. Do your homework. Be an advocate. Make friends with your fears and your moods. There will be plenty of them along the caregiver's path.

What a great opportunity we caregivers have -- to give the gift of caregiving, and to give it wholly and willingly from the deepest part of our hearts.

Another Wave of Grief in Dementiaville

Another wave of grief hit me about two weeks ago. Grief over losing Romeo to dementia. Grief again. It came out of nowhere, out of nothing. I was going about my days, with purpose and content, satisfied with life. Happy much of the time. Then, without warning, it hit. Another damn wave of grief.

The wave stayed for nearly the entire two weeks. It pounded me much of that time. I was at least tearful if not actually crying the whole time. Damn wave.

When a wave hits me, it begins with tears. Sometimes I have no idea why a wave hits, unannounced. Here's the typical scenario: I'm doing a chore around the house, or I'm driving, or I'm out and about doing errands or any number of unexciting, pleasant things. A wave can hit immediately after I've visited Romeo, but usually not. It prefers to get me when I'm not looking. Damn waves.

I usually don't know why I begin to cry. I don't automatically assume that I'm grieving for Romeo, just in case there's something else deserving of my tears. But there isn't. Things are going well in the other areas of my life. For as much sadness and grief I experience over Romeo, there is even more happiness and joy in my ordinary days. So I'm grieving for Romeo, for our lost life together. Damn waves of grief.

My grief then turns me toward thoughts of Romeo. I think of him every day, of course. When I'm not in grief, these thoughts have pleasant emotions attached to them. I'll recall something funny he said, or remember holding his hand on one of our walks, or think about one of the many times we went out for tea. In contrast, when I'm in grief, my thoughts of Romeo take a sad turn. The emotions with them wail their presence, and that, in turn, causes the floodgate to open, and there seems to be no end to my tears. And that is exactly how it is with this current wave.

Okay. So crying is one of my typical behaviors in grieving. Duh. My other dominant characteristic in grief behavior is that I become stuck energetically. There are toilets to be cleaned, floors to be vacuumed, a blog to write, a drum to be played, laundry to be done. Do I do any of it while I'm grieving? Hardly. Instead, I sit and stare at the wall. I sit and stare at the computer screen. I sit and stare at my latest art projects, at the dishes in the sink ready for the dishwasher, at the piles of paper on my desk, at the books on my nightstand waiting to be read. I do nothing else. I sit. I sit and stare. And oh yes, I drum. I can always bring myself to drum. But more about that in some other post (or not).

I'd like to think that during this time of blocked energy the grief processing is happening below the surface, where I can't quite sense it. And so I surrender to the grief and let myself sink as deeply as I need to sink.

Big Blue Eyes in Dementiaville

It's late afternoon. Romeo and I chit-chat. We are in his room. He is sitting up in bed, and I am in a chair borrowed from the ice cream parlor in the building (there is a shortage of chairs for visitors).

We sip on our usual drinks -- steamed soy milk with sugar-free hazelnut flavoring, light foam. Romeo asks for a cookie. I open the drawer in his nightstand that contains his goodie stash and choose two European-style biscuits covered with dark chocolate. I feed him a bite of cookie, then a drink of the soy milk. He can no longer feed himself or lift a drink to his mouth, so I do this for him. He happily munches the cookie and drinks the soy milk through a straw.

We talk about the weather, the food in the nursing home, his cold symptoms (a new development), what's going on with the people we know, the routines of everyday life. This time, it's a pleasant visit. He doesn't complain about situations that his dementia has imagined, twisted, or embellished. There are no stories for me to check on with his nurse or other staff members. He doesn't cry, he is not frustrated or agitated. He is relaxed, content, peaceful. This, in turn, makes me relaxed, content, peaceful. He is fine. And because he is fine, I am fine.

When Romeo finishes his cookies and soy milk, he asks to lie down. I clear his bed tray, move it back to its place against the wall, and go through the routine of adjusting his bed so he is lying down. I lean over and give him a kiss. I back away from him and say good-bye. He smiles and says, "I love you." I reply in kind, and we kiss again. I turn and head out of the room. Nearly to the door, I turn around and see him -- his eyes, bluer and larger than ever -- looking at me with such love and innocence and trust. I sigh, drinking in his essence -- this strong, unconditional love he offers to me freely -- and wonder if he can feel me giving the same to him.

Asking for Money in Dementiaville

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

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

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

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

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

Do You Know Who I Am?

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

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

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

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

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

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

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

"No dementia."

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

Coming Out of the Fog in Dementiaville

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

"Do you know who I am?"

"You are Juliet, my wife."

Yes, yes, yes!!!

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

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

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

Despair With Gift in Dementiaville

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

"Who are you?" he asks.

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

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

"I am your wife, Juliet."

"Oh."

"Do you remember me?"

"No."

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

"No."

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

"Yes, that would be nice."

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

"Would you like to go to sleep now?"

"Yes," he says.

"Is it okay if I kiss you?"

"Yes."

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

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

Need a Lift?
Take a Free Carnation

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

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

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

A Daisy Chain in Dementiaville

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

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

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

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

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

Early Morning Call in Dementiaville

It's 6:30 a.m. and the phone rings. I know it's Romeo before I roll over in bed to grab the phone off the nightstand. I am barely awake.

"Hello?"

"Hi there."

"Hi, Romeo."

"I had to tell you before I forgot."

"Okay."

"I need some more dental floss."

"Okay. I'll bring some next time I come."

"That will be great."

"Okay. Anything else happening?"

"No. I know it's early, so I'll let you go.

"Okay. Good-bye."

"Ciao."

Later, when I visit Romeo, I take two packages of his favorite dental floss. I open his toiletries drawer and place them with the other two packages already there and make a mental note that I won't have to buy him dental floss for quite some time.

Hugging and Holding in Dementiaville

Romeo is tired, lying in bed when I arrive. He doesn't want to get up, which is his usual custom when I visit. So I pull up a chair and sit beside the bed. He closes his eyes. This may be a short visit.

A few minutes pass slowly, quietly before Romeo reaches for my hand. His skin is so white compared to my own fair skin. He is so very white, so frail. Yet, I see the signs that he will momentarily turn into an alpha male. He'll act confidently. He'll take possession of the situation, he'll claim his woman. He'll love me.

Romeo looks deeply into my eyes, reading me like no other has read me before. And then he pulls me toward him, and I have to move to the bed, to sit beside him. He pulls me downward, toward him, to hold me. We stay in that awkward embrace, me leaning over him, until my back begins to ache. I sit up and rest for a while, then he pulls me down to him again. We hold that embrace all the while he croons and whispers his love to me.

And then he closes his eyes. "I'd like to sleep now," he says.

We kiss, I release his hand, move back to the chair. In a few minutes, he is asleep. I stay for a while, then get up to go home.

Sipping in Dementiaville

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

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

"Romeo, move the cup to your mouth."

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

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

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

Gratitude in Dementiaville

"Romeo?"

"Yes, Dear."

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

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

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

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

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

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

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

"Romeo?"

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

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

"Thank you."

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

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

Always Together in Dementiaville, or Not

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

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

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

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

Whisper Of Angels

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

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

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

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

Waves of Love in Dementiaville

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

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

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

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

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

"Something was happening between us?"

"Yes, something was happening between us."

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

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

"Oh."

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

I nodded and encouraged him to say more.

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

Roasted Veggies for a Caregiver

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

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

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

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

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

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

Planning a New Year in Dementiaville

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

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

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

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

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

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

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