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