John and his mom, Nina, in her room the week before Christmas

Her hair, which she once kept a short, neat blonde, is now gray. This particular evening it was freshly washed and brushed into a bob. Years ago, hair was a topic on which we could turn entire conversations, and I don’t believe that she would have ever worn hers this way. But now, so close to the end, there is only so much one can do.

We were at the memory care facility for an early holiday celebration, and John spoon-fed his mother her roast beef, sweet potatoes, green beans, salad and a cobbler with a bit of ice cream. For the most part, she barely looked at us. She just rubbed at some invisible spot on the table in front of her, occasionally landing a hand on her plate and dragging it toward her. But at one point, she suddenly turned to him and a look of surprise seemed to cross her face. She leaned toward him, the muscles of her face contracting as if about to speak, and I could almost see the thought: “Why, I know you!” She stared at him for a few long moments, and we hunched forward in anticipation. Would she speak? But all too soon, she went away. Again.

It’s sometimes difficult for me to be among her fellow residents, to see the confusion — “I can’t find my room,” – and the yearning, “Hi honey, I love you.” We reciprocate: “I’m sure we’ll find your room,” and “I love you, too, you look so pretty today.” It can be overwhelming; it can make me want to run.

After dinner, John rolled her into her room, positioned the wheelchair so that she was facing the Christmas tree and we sat there, the walls and ceiling illuminated only by the tiny lights of the tree. She used to love Christmas, delighting in putting gifts for others under the tree with tags that read “From Santa,” in her neat script. The moment was so rich with memories that briefly, I felt I could float on its surface without sinking into sadness, buoyed by the fact that at least, we were here, in the glow of tiny lights and supported by something bigger than ourselves: a recognition of our place in a long line of others who have already come and gone and carved a path for us to follow. Were they watching us? I think so, and I felt comforted. I ran my hand down the back of her head, smoothing the gray locks, and she leaned into my touch.

She’s not coming back, no matter how many times she may seem to recognize her son she’s not coming back, I thought. And it reminded me of so many others who aren’t coming back: the soldiers who did not return from Iraq, from Afghanistan; the men and women who left their homes for an hour to run an errand and never walked back through the door; the babies and children who were supposed to outlive parents and against all logic, did not; those who due to estrangement or long-held hurts remain beyond our reach; those of whom we’ve simply lost track; and those, like my mother and mother-in-law who are inching a steady path away from us and toward the ones who have already gone.

©text and photo, 2011 Beatriz Terrazas, all rights reserved.

I tried, then, to gather their remains, put them back together and commit them to the page. But my fingers in their eagerness, usually nimble and swift over the keyboard, were so gorged with bits of words they felt like bloated grapes and couldn’t move. How to put down the words when your hands are so full of them you can’t pick out each individual frame to lay it out against the white?

In the end, I believe grief is unspeakable, its depths not fully knowable until the darkness presses on your chest and your toes search for bottom. It is that sea in which we all drown a little bit, or a lot, surrounded by the fragments of words we cannot say.

Some days I surf the hours fluidly, get the stories written, the videos scripted, the invoices logged. I stay above water. Those are good days. Other days, a memory of my mother will stop me short and suddenly I’m in the depths again: She is looking at me with a question on her face, as if she has failed to understand what I’ve said to her — “I love you Mom. Do you love me?” Or we are back at the day two years ago when my dog died and I am picking his bowl up off the floor, and in her eyes, a spark of logic: “Oh. It’s a shame he didn’t get to eat again.”

I tend to hide – physically and metaphorically — during these moments because they defy explanation or description. We have become a people unaccustomed to and uncomfortable with the display of grief. We hide from that which we cannot fix.

When during a phone conversation I tell my sister about the instances when a rogue wave wallops me, I can see her nodding across the miles. “It usually happens to me when I’m driving,” she says. That’s all she can say. Neither one of us knows how to describe these moments, though we recognize them in each other’s life.

It occurs to me that this is what it must be like for my mother, her brain reaching for words that refuse to be corralled into proper sentences, letters that resist being linked to create proper words. Yet –

One day I was driving her back home from somewhere, a doctor’s appointment perhaps, when the tears suddenly forced their way past my lashes and down my face. My mother had already reached that stage where she emoted less and less. More often than not her face was a blank slate. To see me angry over losing my car keys, or to see me laughing at some joke, brought nothing more than a fleeting curiosity to her face. But now, she turned and saw me crying, and very gently leaned over and kissed me on the cheek, once, twice, pressing her lips against my tears. The irony: that was a good day, too.

©Beatriz Terrazas, all rights reserved

http://player.vimeo.com/video/31664501 – ©2011 John Doty, all rights reserved

At the Dia de los Muertos cooking class the chef topped the dessert with edible gold leaf and a lump rose in my throat. I thought of you, Marisela, the sister who arrived early and left too soon. Were you here, this is a dessert we could all share — you, me, and the brother and sister who stayed. Imagine: Slip the spoon past the cool depths of the vanilla ice cream into the silky texture of the creme caramel, cut in half the golden gelatin cubes, one for you and one for me, one for each of them.

Who among your living siblings would you have favored? Would your nose have the indigenous slope that marks our heritage and your hair the straight thickness of your sisters’ crowns? Would your skin contain the chocolate hues of the twin brother with whom you swam our mother’s waters? Decades later, I think he still misses you, the girl with whom he tumbled in the womb. Impossible not to, I suppose, given the skin-to-skin quarters you shared and the inescapable rhythm of one another’s rushing hearts. Who knew it wouldn’t last?

Today, our strength would be greater for our numbers — four! — an added pair of hands bound by history. Because we would have laughed and we would have fought. We would have whispered in the dark long after we were supposed to be asleep. I would have recorded you reading storybooks as I did our other siblings. As the oldest among us, I most certainly would have bossed you around and for a while you might have hated me. We would have gone our separate ways but remained united by the umbilicus of our mother. Perhaps you, too, would have one day given birth. I can almost see you, a grown woman weighed down with a child in your arms and a toddler clinging to your hand. We would reach for your children: “Let us help you.” Funny how in this scenario I see a flash of skirt, the curve of your dark head, or your receding back, but your face eludes me. Maybe because it would be too painful to see my own features in the symmetry of your face.

Our family is not among those who tenderly remove the brown bones of ancestors from their resting place on the Day of the Dead. We never honored our antepasados with food or sugar calaveras or marigolds. That has never been our way. Instead we visited cemeteries, placed flowers on graves, and remembered. Today, I yearn for the solace of a more elaborate ritual, a sensual observation of color and food and song to commemorate those who’ve gone before and who certainly welcomed you into greater bosom of family.

Have you watched me living my small life, Marisela, seen me struggle to retain control over even those things that are inconsequential? As your soul cavorts among universes yet unknown to me, do you think, “Oh, sister, if you only knew! Let it go.” Can you, from your omniscient plane, access the innermost reaches of our mother’s brain? Does she think of you? Of me?

I’m barely a decent cook whose greatest strength is that I can follow a recipe. I won’t even pretend that one day I will make the creme caramel dessert topped with ice cream and gold leaf. The best I can do in terms of an offering is use the overripe fruit on the counter to fill the kitchen with the scent of banana bread. I think of you as I slice into the cooling loaf.

But know this querida: If we’d ever had the fortune to share a dessert fit for royalty, I would have let you have the gold leaf.

Text and photo ©2011 Beatriz Terrazas, all rights reserved

How had we gotten here so soon? I thought I had more time. When visiting my mother-in-law in residential care — and her mother, too, before she died in 2005 — I’d seen the occasional woman resident walking around holding a doll, the vestiges of motherhood memory compelling her to cradle as her own flesh and blood a children’s toy. Still, I was unprepared for my own mother to do the same.

It was the peak of a swell that had been building since summer, a slow-moving wave of change that bit by bit snuck up on me until I felt dragged under by its power, caught in a current of grief.

The sea change, which I did not yet recognize as such, announced itself in July with a phone call from our petsitter while I sat writing in a rented casita in Albuquerque. My guinea pig had died. As far as tragedies go, this one affected only me. As my husband liked to tease, Moby was only a rat, albeit a giant white one with red eyes. I’d adopted him after he sat in a pet supplies store for a year because nobody wanted him. In fact, someone once bought him, then returned him. I’m a sucker for a hard-luck story, but also, as a kid I never had a guinea pig. He represented a bit of innocence and wonder, a slice of childhood retrieved during trying times. When hungry, he stood on his hind legs rattling the bars of his cage, squeaking loudly. He hid in my hair when I held him in the curve of my neck. My husband discovered he could whistle at a certain pitch, and Moby would answer. I loved Moby.

A few weeks after that, the swell rose a bit higher: Chaucer, our male bearded dragon died. We’d gotten him when he was just six months old, and he’d stretched into a handsome, yellow adult almost two feet long, so tame and gentle we could hand-feed him. Even my mother used to like holding him, and allowed me to photograph her with him early in her illness. Cancer, the vet said, showing us the images of the necropsy. I have a strong stomach; what was more difficult to accept was that I had yet another animal habitat that would sit empty, yet another pet to miss. I loved him, too.

Then this: Earlier this year, my brother had decided to move back to El Paso so he could be of more help with Mom. A self-employed private investigator, he has lived near me for about the past ten years. Now, he made plans to leave his business in someone else’s hands and applied for a job that came open with an El Paso non-profit agency. When he got the job, I was elated. More boots on the ground to help our sister with Mom was a good thing. My trips to El Paso would still happen, but with less urgency.

Still, as I drove the 600 miles to El Paso, SUV packed tightly with my brother’s clothes and mementos, I felt incredibly sad. And off balance. Sometimes having a sick family member feels like you’re trying to keep your head above water at all times, trying to ride each wave that comes in hopes that it won’t pull you under and thrash you. Every small change, even if it’s good, creates chop. And just as you feel ground beneath your feet, the next one appears on the horizon.

Thanksgiving, Christmas, year-end festivities? There isn’t time for me to think that far ahead, must less “feel” the holiday spirit that has previously had me humming Christmas carols to myself by October. And believe me I’ve longed to feel the stirrings of something besides grief. What I’ve discovered is that sometimes I need to simply sit with my emotions for days, or weeks if need be, and ride them out in all their bone-jarring intensity until I can come up for air. If I don’t, they’ll just take me under later.

I’ve found my footing for now. I hope I’m ready for the next wave.

When I do think about it, the temptation is to believe that I will be able to simply walk into an ocean or off a cliff rather than face the difficult road I’ve watched so many people walk. And I know others who feel the same way. But there must be something of the practical I inherited from my forebears, because I finally did something I’ve been considering for a while.

My mother-in-law was caregiver to her own mother, who lived out her final years with Alzheimer’s in residential care. Surely, my mother-in-law had thoughts similar to my own, because one day, out of the blue, she told my husband and me that she’d bought a long-term care policy, just in case. Though I also remember her saying she felt sure scientists would soon find a way to cure the disease that was erasing her mother; even if she should ever come down with it, there was hope her life would end differently. When she was diagnosed with irreversible dementia — normal pressure hydrocephalus for sure, and maybe Alzheimer’s, as well — that long term care policy was suddenly very valuable. For five years, it would pay about $3,000 a month toward her care.

About a year ago, during a visit to our insurance agent’s office, my husband and I brought up the issue of long-term care policies for ourselves. We got a quote. We discussed it. We let it go. Periodically, we would bring it up, but not act on the idea one way or the other. Our biggest obstacle — besides this being another monthly bill to pay — was the idea of putting money into a fund that we might never use. It’s a gamble of statistics, after all. Will we live long enough to need this, or will we die in a car crash? But a rider that would transform this into a lump sum we could will someone should we not use it made the cost prohibitive. Then, earlier this year, my mother-in-law’s policy finally ran out. Could she have paid all those expenses on her own? It’s possible; she had a good pension and savings. But for those five years, my husband was able to focus on his mom and her needs rather than whether she could afford the care she was receiving. Now, she is nearing the end of her life. Every time I see her, I consider myself fortunate; every visit could be our last.

I don’t know what prompted us, finally, to apply for a policy of our own. The fact that it worked so well for my mother-in-law probably had something to do with it. But I think, too, it had something to do with control. In which parts of this journey do I have a say? Maybe the way to look at this insurance would be to simply think of it as peace of mind. Or to look at it the way I view other money I can never get back — my health club membership, for instance. I figure that expense and the time I spend there are shoring up my future health.

So, I researched two different insurance carriers. We applied. It was decidedly not fun. It tried my patience. But the process we went through might help others who are considering doing the same thing. So here is what I learned:

• This one’s a given: The younger and healthier you are when you buy it, the less expensive it will be. One agent told me that when you turn 50, the rates jump significantly. That makes sense, but ask your agent what policies are available to you.
• The applications are an invasion of your privacy. The carrier we went with conducted a cheek swab to test for smoking, AIDS, and other possible conditions. I had second thoughts because the other carrier I researched did not require a cheek swab. Some conditions will disqualify you altogether while others may raise your rates. (And no, it’s not fair at all. Why should those who most need this help be the ones disqualified? It boggles my mind.)
• One thing I meant to ask and did not: What happens to our privacy should the swab be positive for an illness? Definitely, ask! And let me know what you learn.
• We completed a medical questionnaire with our agent, then with a third party company contracted by the carrier. That third party company contacted our doctors for medical records. I had requested to answer the questionnaire after 5 p.m. so as not to interrupt my work day. Naturally they called me at 9 in the morning, so I told them to read the notes my agent sent regarding appropriate times to call. They asked if my husband would be doing the questionnaire right after me. “Did you not get a number for him?” I asked. “Read the notes our agent sent you.” They sent me a letter in which they address me by my husband’s last name and not my own. Did I mention the process tried my patience?
• If  you and your spouse purchase a policy together, you may qualify for a discount. We did, and our combined premiums add up to about $100 per month.
• The policy doesn’t just cover long term care at the end of your life; it can cover expenses should you have an illness or medical event that requires shorter terms of care. Again, ask about it.
• Most policies have a waiting period during which you’re responsible for your own bills before they begin to pay. Our policy has a 90-day period, though by paying a higher premium we could have brought that down. We did not purchase an inflation rider that would have increased the payout every year. That would have made the policy unaffordable for us, though it would have protected our other financial assets.

I realize that people are struggling financially; these are hard times. More and more of us can’t afford basic health insurance, let alone something that might feel like a luxury, a long-term care policy for instance. But for those of us who have seen the devastating effects of disease in our families, it’s something to consider.

Like yesterday, awakened at 6:30 in the morning: my brother-in-law saying the police had been called and my sister was on her way across town to Mom’s house, where Mom had walked out into the dark and disappeared. When? How?  The caregiver was near hysterics when I reached her, “I didn’t hear her leave! I didn’t hear her leave.” What could I say? My mother-in-law walked out of residential care in broad daylight once. I’d awakened one night to find my mother fully dressed and sitting in the living room. While police, sister, caregiver and cousins hit the streets to look for a woman who’d defied locked doors and her own fears and paranoias to leave her house — 30 minutes ago? an hour earlier? two hours? — I sat in my living room, the sky outside going from deep indigo to dark gray. My brother lives some 20 miles away from me. I woke him with news, and then we waited.

What do you do when your mother could be lying in a dark gutter with a leg or foot broken, or trying to cross the nearby highway, or stepping out of the shadows and in front of a car? Heart pounding, I began dismantling the day’s plans so that I could catch a flight, or drive 600 miles home, or break down and plan a funeral if needed. Muted, I could only picture the worst: the tears, the trip home, the editor I owed a photo story. Hundreds of contacts in my cell phone directory, and not one I could think to call. A writer, mouth agape, and not one word I could think to utter.

Several weeks ago, Julia Alvarez spoke to a group of writers. We talked about the darkness in the world today. She said — and I’m paraphrasing here — that when events affect human beings on a large scale, we are often rendered mute with horror. A tiny woman, she mimed this for us, mouth opened in silence, hand at her chest. Similarly, at times of great stress or tragedy, we stand slack-jawed, our voices ripped from us by shock. Then the poets step up; metaphor by metaphor, image by image, they begin the job of witnessing. After that, the prose writers come, laying out the stories and filling in the details.

I thought of Julia yesterday, in my dark living room waiting for a phone call. Of how lately I’ve been struck dumb by the hate and the hypocrisy around me. By the greed and selfishness I see. Watching legislators quibble over principle while our poor go hungry, our children go uneducated, our sick go without medicines, and our elderly try to decide whether to eat or buy prescriptions. What words — in any language — could I possibly offer as balm to soothe? What words could I possibly utter that won’t be snatched, co-opted and twisted into something I never meant to say? What words could anyone have offered me yesterday morning as I waited? Possibly, a poet would have known how to gather the threads from the shadows and the hastening dawn and stitch together the appropriate images in which to wrap myself.

While I sat in silence the phone rang. One of my cousins’ wives had found my mother in a neighbor’s Jeep. Clad in her nightgown, her legs squeezed into the arms of a shirt as if it were a pair of pants, she’d managed to climb the three-foot height into this vehicle. In her arms she was cradling a large trophy our neighbor had left in the car. The caregiver bathed her, found not a bruise or scratch from a bumped knee or shin.

I fear our collective return to sanity will be more torturous than searching for a lost woman with Alzheimer’s. We need the poets. We need them now.

©2011 Beatriz Terrazas, all rights reserved.

A couple of weeks ago, my mother awakened from a nap and began counting: “Twenty four, twenty-five, twenty-six, twenty-seven, twenty-eight, twenty-nine …”  I waved my hand in front of her face saying, “Mom, Mom, what are you counting?” and she would not stop, just kept  looking at some invisible line of sheep or birds or trucks parading by and tallying them up aloud. It’s as if during sleep her mind reverted to a numerical code, like a computer screen gone gray and showing a series of numbers. What did these numbers mean? Did strings of them conjure up images of people or events? What happened when she stopped counting? Did the pictures in her mind fizzle abruptly like a switch going off, or did they hang there for a moment before slowly dissolving?

In my mind, a different kind of code: $$$. How many $s will cover an extra night of care for my mother? How many $s would it take for a good residential facility? The latter’s an easy one because we don’t have enough $s. My code runs in the opposite direction, too, into the realm of negative numbers. If Congress cuts Mom’s Medicaid, how many hours or $s of day care, of home companion care will we lose? How many more $s will I have to earn to make up that loss? More importantly, will I be able to do so?

My sister calls in the morning, and I hear her coaxing Mom, hoping that she can dredge a few words from her vanishing mind and sing. But I hear only my sister’s voice. At the end of the song she says, “Mom, you know the words.” And my mother joins her in singing. She had her mouth open but nothing came out at first, my sister explains. Code: “I remember this song. But what does it mean?” The word “birthday” no longer bears any relation to the question she asks incessantly when I am with her: “How old are you?” Would numbers — thirty-nine, forty, forty-one, forty-two, forty-three — have brought to mind a cake and lit candles?

In the card, my friend includes two sticks of gum wrapped in silver paper. I don’t have to put them to my nose to know they are Wrigley’s, but I inhale their minty fragrance anyway. They bring to mind thirsty afternoons of marching on a football field; band uniforms that smelled of mildew no matter how many times we dry-cleaned them; climbing rocks at Hueco Tanks; a school trip during which we sneaked back to the buses where I tossed candies in her mouth until one lodged in her throat and she nearly choked. Once, she drove me home in my own car after I’d had too much too drink, stuck a piece of gum in my mouth and said, “I’ll call you tomorrow.” Then she ran off into the night. Years later, when she took a deep breath and in halting words told me she was gay, I rolled my eyes and said, “Yeah, I know. What took you so long to tell me?”

Now, I slip the gum back into the card and smile. There will be more days when there aren’t enough sticks or piñatas in the world.

© Beatriz Terrazas 2011, All Rights Reserved

1) When we say that mom’s routine is important, please believe us. If we keep her away from home a few minutes too long, she can get agitated and frightened. If we keep her out too long, she risks missing important medicines, as well. We can’t always take them with us. We know you want her to be like she always was, where pushing back our leave-taking a few minutes wouldn’t matter. But how much would you enjoy yourself if you were forever wondering who, exactly, are all the folks around you, and why they’re so loud, why they laugh so much? Might you not be frightened and uncomfortable?

2) Please understand if we can’t take her to see you as often as we used to do. It’s easy to take for granted the many small tasks that are involved simply in getting out of the house because you don’t have to think about it if your mind is working well. Taking her out means making a pitstop first, packing up the disposable underwear in case of accidents, locking the door, walking her to the car, helping her in the car, making sure she is buckled in. As her disease progresses, it will be easier for you to come see her — and we would love to have you come visit in her home, where she feels comfortable and safe.

3) If you do want to visit, please let us know in advance so we can prepare. Just dropping by means that we may be in the bathroom cleaning up after her, or may be feeding her or otherwise caring for her. Walking away from where we can see her even for a few seconds can be dangerous for her.

4) If you want to help, the best thing you can do is ask how you can help. Unless you are a caregiver yourself, unsolicited advice can add to our frustration and we might even lash out at you unintentionally.

5) Finally, if we seem exhausted, out of sorts, or unable to return your phone calls or e-mail messages, know that it isn’t personal. Caregiving is an exhausting job, and sometimes it literally is impossible to answer your e-mails or return your calls in a timely manner — or at all. Sometimes, these things drop to the bottom of our priorities list, eventually fall through the cracks and disappear. We ask for your understanding when this happens.