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