My Mother’s Brain: love in the times of dementia

A Latino family’s story about Alzheimer’s Dementia

Tag: comfort

Francisca Corona Terrazas, March 9, 1930 – March, 28, 2014

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Our dear mother gave up her battle with Alzheimer’s Friday, March 28. She was 84 years old. She was born and grew up in Las Nieves, Durango, a small village in Mexico, but lived out most of her adulthood in El Paso, Texas.

In terms of money, she was poor. But she was a devout Catholic and believed that if you want social justice you live a life that reflects your beliefs. She lived what she preached: she had little wealth, but from what she had she gave willingly and lovingly to those who had less. After she retired from working in the public schools and before she became afflicted with dementia, she spent almost twenty years as a volunteer with Our Lady’s Youth Center, a Catholic organization that not only teaches the Catholic church’s tenets but is an advocate for social justice. For years she led a team into the outskirts of Juárez to deliver food to elderly, sick and homebound people who often lived in one-room homes with outhouses for sanitation. To do this, she had to drive a van along dirt roads that were sometimes washed out or so rutted they were nearly impassible. But not arriving was not an option; she would not let the least among us go hungry.

She never asked for anything in return for what she did. But we, her family, believe that while she was ill, her good deeds were returned to her a hundredfold. With the help of personal attendants and round-the-clock caregivers who bathed her, changed her clothes, fed her, and took her for walks, we were able to keep her in her home throughout the disease. Only in her last three weeks was she unable to walk, and only on her last day was she bed-bound. But most importantly, even those caregivers who didn’t know her until they were assigned to help her developed a deep affection for her. After she died, a caregiver who had been with her only since last August, showed up at the house in tears, asking if we needed help with anything, even if it was just doing Mom’s final load of laundry.

In her last few days those who loved her — brothers, sisters, nieces and nephews — visited to say farewell. Incredibly, despite having lost her memory to disease, she reacted to seeing those she’d not seen for a while, holding their gaze, reaching for and holding their hands. Her last hours were as peaceful as we could have hoped for. She did not struggle. She did not panic. She was surrounded by her children, two of her sisters and one of her caregivers. We thanked her for all she did for us. We told her we loved her. We sang to her. We showered her with kisses. We assured her we would be all right, and that it was okay for her to let go. And she finally did, a few minutes before 3 a.m. on Friday.

We, Angelica Terrazas, Luis Carlos Terrazas, and Beatriz Terrazas, are grateful for all the support we’ve received from friends and family over the last several years. You’ve buoyed us through a difficult and emotional journey.

If you’ve been moved by our mother’s story, we ask that in her memory, you consider doing something kind for someone in need. 

 

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Prayer to my ancestors

A few weeks ago, my sister texts me a photo of a journal entry our mother made. She found it while going through our mother’s things. The words are jagged and misspelled. They lack punctuation and the necessary accents and tilde. The scrawl lists, wobbles and threatens to slip off the page: Estoy muy triste por la confucion que esta pasando por mi mente espero en Dios nuestro Senor que esto no progrese.”

No wonder the words refuse to tiptoe across the paper like buoyant birds – fear this heavy can’t sit lightly on the lines of notebook paper. And because the words are so bloated with meaning, the weight of the unspoken plea in them is a blow to my heart: Deliver me oh, Lord, from the confusion in my mind. What’s happening to me Lord? Heal me, and if you won’t heal me, won’t you please at least stop this illness in its tracks? Deliver me, Oh Lord.

My mother is now well within the grips of Alzheimer’s so her prayer breaks my heart. And it makes me realize how little I’ve actually relied on prayer since the diagnosis. Does God even exist? Once, I wrote about my struggle to visualize and pray to a God beyond that one taught by my church, the God who when rendered in paintings and relics emerged looking very much the conquistador: pale-skinned, blue-eyed, stern and triumphant. Many people (rightly or wrongly, I assumed they were white judging by their surnames) wrote me lots of kind notes, offering to pray for me, and suggesting I visualize God as spirit. Oh, how badly they wanted to save me. One pastor even dropped by the paper where I worked – unannounced. I was away from my desk at the time. But others shared my struggle. How can one pray to the oppressor?

I confess: I now rarely attend my own church, led as it is by a hierarchy of well-fed men who have protected rapist priests in a global cover-up. And with so many churches further perverting the image of God further into a homophobic, misogynistic deity with little compassion for the hungry, the homeless and the sick that he (or she) is laughable, I find myself turning back to my ancestors for strength as we deal with my mother’s disease. More specifically, to the strong women who precede me.

In civil war torn Mexico, my great-grandmother is said to have clung to her son, my grandfather, as a member of Los Dorados de Villa dragged him away to be hanged for some imagined insult. He was just a boy then, my grandfather; what did a boy do to merit death? Maybe he booted their horses from the pasture where our family’s cattle grazed.  Maybe he wouldn’t let them in his mother’s house to take their fill of food and daughters. These Villistas did and took what they wanted, whenever they wanted. And whatever the perceived slight of this boy, they took offense and decided he should hang. Somehow he escaped.

Did my great-grandmother pray?

Deliver my son from evil, Oh Lord. Spare me the indignity of outliving my son, of having to bury my child. Oh, Lord, deliver us from the rapists and assassins of this bloody war. Please don’t let them kill my son.

Did God deliver him? Or was it, as family lore has it, that he managed to slip a hand between his neck and noose and swing there while family cut him down? Did my great-grandmother massage his sore neck and wash his face with her tears as she held him securely in her arms?

My grandmother, the woman who eventually married the boy who escaped the noose, reared a dozen children. Several were not biologically her own, but the children of a deceased relative who nonetheless were loved as if they’d emerged into the world from her own body. Two of her grown sons were once shot through the gut by a cousin in a cattle dispute. They survived, but that launched the family’s migration to the border, one sibling at a time, so that in the 1950s, years before I was born, my mother was among the few who were living in the U.S.

One night, shortly after those shootings, while my mother was still single, she was awakened in the pre-dawn hours in New Mexico at the house where she was a live-in housekeeper. Police asked her to come to Juárez where her oldest brother had been shot. All the way there she prayed to the Virgin Mary whom she honored with a medallion around her neck. She warmed the medallion in a clutched fist: “Let my brother live. Let my brother live.”

Did Mary hear?

My mother arrived in Juárez only to identify her dead brother, a bullet hole in his left temple. She had to notify her parents of his death. My mother now remembers nothing of this, so she can’t fill in the blanks – the way the car’s headlights cut through the night on the drive to the border, whether someone had cleaned the blood off my uncle’s body, whether she held him to her one last time. Nothing.

I’d long heard about the death of this uncle I never got to meet, but I’d never learned about my mother’s role in the story until she got sick. Yet when one my aunts shared the tale with me some five decades after the event, saying, “Your mother is a strong woman,” I swear I heard my mother crying as she stood by her dead brother’s side. Surely she prayed to be delivered from the nightmare of her brother’s murder. When she realized the futility of that, then she must have prayed for strength.

Deliver me, oh Lord.

Years later, she would write the prayer for healing of her mind.

When she wrote it, we don’t know. The entry in her notebook bears no date. She must have taken pen in hand as the haze of illness rolled over memory – when she knew something was happening in her brain but before she lost her ability to write. Outwardly, she was mostly calm, firm in her belief that God would see her through whatever this thing was. For all of our reassurances that she would not be alone on this journey, she never spoke of these fears to us, her children. The only person to whom she ever said the word Alzheimer’s was one of her sisters, and even then, it was in the form of a question: “It can’t be Alzheimer’s can it?”

Maybe it’s that I’ve spent enough time sitting in kitchens and living rooms drinking coffee with my primas and my tias, marveling at the things they’ve survived – rape, murder, the death of their children, the slow coup of their homeland by drug cartels – and the way they shoulder the losses, the burdens, and move forward. Or maybe it’s that I have, in fact, lost the beliefs I once had. Whatever the case, when my mother’s prayer crosses my path, I do not call on God. Instead I call on them, grandmothers, the aunts, the cousins who have preceded me: How did you do it? How did you manage to keep on putting one foot in front of the other? If you stumbled, how did you pick yourself up? Help me. I need to know how to do this.

The small things involved in my mother’s care, somehow I have dealt with them. Selling her car to keep her from driving, the phase during which she sang in public to every kid she saw, the phase during which men’s beer bellies fascinated her – I’ve coped. Dealing with her everyday fears and paranoia, the house doors that must be shut at all times, the curtains that must be drawn at all times, her purse, her winter jacket, her trash can even, for Pete’s sake, that must be taken to her room at bedtime so that no one will sneak in during the night and steal them — yep, I’ve dealt. Our family has all dealt.

But faced with my mother’s prayer for deliverance from sickness, I buckle. This is the only real indication I’ve had of her fear along this journey. And the words are such a thin plea in the face of a physiological tsunami that they, too, fold, allowing me to be sucked down into the churning waters of her fears where everything she didn’t write is a tentacle that reaches and strangles.

Deliver me oh, God from the confusion in my mind. Do not let it worsen, I beg you. Deliver me. Deliver me from forgetting my children’s faces, from forgetting how to drive, how to cook, how to dress myself. Deliver me from the stink of piss and shit in my diapers when I forget how to use the toilet, from my daughters having to wipe my soiled clothes and bathe my scarred and sagging body. Deliver me, Lord, for I am frightened.

After she retired from serving school children lunch, my mother spent years volunteering with a Catholic community whose prayer was visible in action. Among the things my mother did was to deliver groceries weekly to some of the most destitute – old, sick women living in one-room shacks, multiple families sharing a tiny home. But she was like this even before – my sister remembers the mortification of being driven to school by our mother on blustery winter days and having her stop to give rides to the children no one liked, the outcasts, the misfits, the weird.

Maybe that’s the reason that when politicians and legislators pray in public, it seems such a charade. Because I’ve come to believe that prayer is the hand that frees the noose and wipes the blood off the dead and dying. Prayer is the eyes that see the kid no one else wants to see, the eyes that won’t look away from suffering when the rest of the world turns away.

I believe my ancestors hear me. When I wake up at 3 a.m. to change my mother’s soiled underwear and rub ointment on her bottom, when I spray the bathroom walls with water in an effort to bathe her, when I run a comb through her wet hair or tie her shoes, even when I write a check to pay those who do these things for her far more often than I do – my sisters are with me. They reach for me across the decades, cradle me to their bosom and rock me in our history.

And whether or not there is a God, and whether or not I acknowledge his or her existence in public, when my mother prays for deliverance, is being there for her not an answer to her prayer anyway?

©2012 Beatriz Terrazas, all rights reserved

The broken bones of words

Last week I wanted to say, “Happy Thanksgiving,” and mean it. But my lungs were so clotted with the broken bones of words — stems, poles, loops and the odd comma — that I was unable to speak. The broken words bottlenecked in my throat, their jagged pieces piercing the skin of my mouth and lodging there, the detritus of failed communication: g, lo, b, h, yo. r! m! j!

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

A few guidelines for family and friends

Being with my mom always reminds me of the heavy burden my sister bears as the daughter who is in charge of our mother. I haven’t a clue how she manages different caregivers’ schedules, Mom’s doctor appointments, finances, and grocery shopping, not to mention her own life. Because she, too, has a family and career of her own. Never are the issues of juggling all of these things more clear for me than when I am the one dropping balls. Monday was frustrating due to a well-loved but unexpected guest who had all sorts of advice that was well-intended but mostly inappropriate. If you’re not a caregiver it’s difficult to understand the rigors of being someone else’s brain. It’s difficult to understand how tightly choreographed a caregiving schedule can be; I’m not kidding when I say that some things have to be timed down to the very second. For those who want to be helpful to caregivers but don’t know how, I offer these few words.

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.

The sum of her and me

Nina, my mother-in-law

I’m holding a colander, its metal dulled, nicked and dented, its three legs wobbly. Should it go or should it stay? I have a memory of family dinners, the colander sitting in the sink, filled with steaming noodles, and it tugs, threatens to unravel emotions wound up tight within me. We are exhausted; this is the end of a solid year of cleaning out my mother-in-law’s house since her move into residential care. The colander is just one of the hundreds of things we’re sorting.

My husband, John, has grieved the process of emptying this house. There is a singular pain to letting go of a childhood, of the rooms and floors where you grew up. My emotions stem from a different place. Going through my mother-in-law’s things is forcing me to reassess our relationship, to examine the kind of person I’ve been with her. Was I generous enough? Tolerant and kind enough? Did I show her the respect she deserved? In the sum of human interactions, where did she end and where did I begin, and what, after all, did it matter? I am plagued by a nagging certainty that there is something here – a lone object among the hundreds – that will reflect the balance of our relationship, and that I should keep as a memento.

This is what I ponder as I look for the colander’s proper place. I turn it in my hands, judge its emotional significance, then place it in the “give away” pile.

*

When I first met Nina some 20 years ago, I was immediately aware of our differences. Besides the most obvious one – I’m a Latina, and she is white – she harbored a traditionalism that I found foreign and discomforting. Nina was a stay-at-home mom who’d chosen the path of PTA and band booster meetings, while I had launched my journalism career at full throttle. In my 20s when I met her, I carried a chip on my shoulder about a lot of things – feminism, racism, politics – things that I sensed would set us up to clash in spectacular ways.

Yet, when John and I decided to live together shortly after I met his family, Nina and my father-in-law cheerfully loaded all my belongings onto a pickup truck and helped me move into John’s house. In one of those moments between carefully wedging armoires and dressers through the front door and planting heavy boxes on the carpeted floor, Nina pulled me aside and said, “Beatriz, I just hope this leads to a legal commitment one day.”

Our differences became more apparent when John and I followed through with that “legal commitment.” Nina had to twist my arm to register for wedding gifts. I just wanted to throw a big Mexican party where we could dance all night.  She also volunteered to help me find the flowers, the cake and the venue.

And because I live 600 miles away from my own mother, Nina helped me shop for a wedding dress. (Probably because she suspected that left on my own I would select something far off the beaten path.) My inner tomboy loathed the idea of yards of fabric and lace. I’d made it pretty clear that I wasn’t going to have a train or a veil, and I may have even mentioned the word “elope.” We’d been to just two stores when I walked out of the dressing room in a simple body-hugging sheath. She took one look and said, “Oh Beatriz, this is the dress. I’m not going anywhere else.” I looked in the mirror, and she was … right! She was also right about where to get the flowers and order the cake.

But there were other issues where I insisted on making my own decisions. She wanted me to take John’s last name; I pointed out that my parents had given me a perfectly good name. It would be easier if I took his name, she insisted. Not for me, I said, since I would have to change my checking account, credit cards, Social Security.

In the years that followed, I sensed her disappointment, or perhaps puzzlement, about other choices John and I made – choices that I intuited she put squarely on my shoulders. Children for instance: we had none, and no plans to change that. Once in a while, she’d ask, “Are y’all going to have any kids?” But in time, she quit asking.

Early in our relationship, I was a strict vegetarian, something I suspect she found a little baffling. Yet, at Thanksgiving and Christmas dinners, she prepared enough vegetable side dishes so that I could partake fully of the meal. She thoughtfully made extra portions of the green bean casserole that I loved so much. And when she made spaghetti for informal Sunday dinners, she prepared the meat sauce that everyone else loved, and a vegetarian tomato-oregano sauce for me. There was something comforting about the smell of rolls and oregano, about the trickle of water seeping through the noodles in the colander.

There were things upon which we agreed in absolute terms. Margaritas, for instance. We both liked them frozen, with no salt. We both loathed raw onions on our enchiladas and loved Coach handbags. We also loved a sale.

Before Internet shopping took off, Nina was the queen of finding deals on anything I needed. Blouses, aluminum cookware, lamps – all I had to do was give her a size, a brand, a color, and within the hour she would be on the phone having found the the closest store with the item in stock, the best price and the 15-percent-off newspaper coupon. “You should have had your own TV show,” we teased her. “You could have called it Nina Shops.”

Over the years we became comfortable hanging together without John. If he was working and I was off, Nina would call to see if I wanted to meet for dinner or go watch a chick flick. Once, she traveled to El Paso with me to attend a family anniversary; at the dance, she joined my cousins and me on the dance floor and demonstrated a few steps of the bump and grind, as if she were just one of us. And for that moment, she was.

We did have the occasional blow-up. Casual remarks she made about some social issue often rattled one of the chips on my shoulder: A university program was giving preferential treatment to “minorities,” she’d say, and didn’t I think that was reverse discrimination? When I reported a story on home births, she shuddered and regaled me with all the things that could go wrong, saying that that’s what hospitals were for and weren’t these home birth advocates crazy? Any of these things were enough to send me ranting to John. How could his mother harbor such rigid beliefs as we entered the new millennium? Did she see the entire scope of these social issues, or was she simply clinging to her beliefs in insecurity?

On the whole, however, I felt pretty fortunate to have a mother-in-law who didn’t berate me behind my back, who found pleasure in my company. Her best friend often told me that Nina always spoke well of me, and that she was grateful ours was not the stereotypical antagonistic relationship portrayed by Hollywood.

And truth be told, often I was the one who called Nina and invited her out for a drink. Sometimes I genuinely craved her company; if I’d had a shitty day at work or if someone had really ticked me off, she would always take my side. But if I’m honest with myself, I have to confess: sometimes I felt I was doing Nina a favor with my friendship. Because I thought that she lived vicariously through me a little bit, that she enjoyed hearing about my journalistic escapades – the gang members in west Dallas, the plane flight across Cuba in a rattling Russian turboprop, climbing the Great Wall of China.

Still, she always had the ability to make me laugh, and we had plenty of genuine good times. We once attended a wedding together, just she and I. In the moments before the ceremony started, Nina joked that since the couple had lived together for so long, this was no blushing bride and she better not try to fool anyone by walking up the aisle with a veil over her face. When the bride walked in, face obscured by a cloud of white, Nina turned to me and said, “Oh, shit.” We stifled our giggles in the solemn silence.

Sometimes, when I was in a foul mood and deliberately stirred the pot with an edict about a topic on which we differed, it backfired on me. Sometimes all Nina said was, “To each his own, Beatriz. To each his own.”

Other times, she was just plain kind. Like the morning when I awakened with a bad case of vertigo. John was long gone to work, and the slightest movement of my head set the room spinning so much that I couldn’t get out of bed. I managed to reach the phone on the nightstand, and not 15 minutes later Nina walked in the door to take me to the doctor. This memory would go a long way with me later – for instance, in the days after she had bladder surgery and she needed someone to spend the night with her at home. I volunteered, thinking she’d be more comfortable with me rather than her son peering at her catheter in the middle of the night.

Even during those rough months when we brought her into our home to live out the early stages of dementia, I found myself recalling the good times we’d had in order to cope. She was justifiably angry at getting sick – and who could blame her? Once she sat at the table and wept, lamenting that she’d been widowed in her early 60s, that being sick precluded her from doing something like going back to school, but mostly that we wouldn’t allow her to go back home and live alone. She often took her frustrations out on us, screaming, once tossing a chair, and another time, throwing a cell phone. She even told the caregiver who came every weekday to be with her that we were keeping her prisoner.

She had hallucinations, and until doctors controlled them with medication, insisted that strangers had broken into the house and eaten her potato chips, or that one of our dogs had climbed into the clothes dryer and couldn’t get out. I often felt way in over my head with all this, and when things got too intense, I would redirect her by suggesting that we go out for margaritas. Or that she help me cook pasta. Or that we watch a movie. Sometimes, we sat together and watched Seinfeld reruns and laughed until we cried.

And then, she made the decision that if she couldn’t go back home, she would move into assisted living. I was hurt. Until I realized that this was simply her way of maintaining her independence as long as possible. As long as she made the decision, she was in the driver’s seat. But John and I both knew that there would be no going back from this point. We were faced with the reality of cleaning and selling her home.

*

There is something especially poignant about cleaning out Nina’s kitchen. We shared so many meals here, meals she cooked for us. And I’m reminded that sitting at the table with someone is an intimate thing. You eat a dish someone prepared not just to nourish your body but also to please your palate. You joke, laugh and share family stories over the ritual of eating. Here, in this act of communion, is where we lay aside differences, grudges and past offenses in order to love.

Amid these thoughts, my eye goes back toward that scarred colander I placed on the “give-away” pile. It reminds me of those pasta dinners, the vegetarian sauce that Nina used to make for me. Why do I expect the important pronouncements in my life to be loud or jarring? As if aha moments should be literal: “Aha!” More often than not, they’re subtle things that surface gradually over time and wait for me to take notice.

Nina never told me outright that she respected my beliefs; she never said to me the words “I love you.” But just the same, her feelings were folded into her actions, into the compromises she made for our relationship. They were in the fact that she went out of the way to create foods I would enjoy at her table, like the vegetarian pasta sauce. I see this now, just as I see that it was never a question about who was right or wrong, about who would win a particular argument. It was about striking a balance between the comfortable and uncomfortable, the things on which we agreed and those on which we didn’t. It was about friendship. About love. And yes, there were ways I could have been a better friend, a better daughter-in-law. I could have been less quick to judge and quicker to release resentments. But if ours had been a perfect relationship, friction and tension-free, there would have been nothing against which to measure our commonalities, no celebrating where our paths merged.

I take the colander from the “give-away” pile and place it on the “keep” pile.

©Beatriz Terrazas, 2011, all rights reserved  

The universe of her skin

Coloring time ...

A break on a playground bench during a walk at the neighborhood school.

“Come on, wash my hair,” says my mother after we’ve gotten the water temperature just right. And I lather up her thinning locks so that she can spray her scalp with the hand-held showerhead.

“Wash my back,” she says. And I rub soapy circles over her increasingly rounded back. That’s when I notice that she has a small spray of rod-shaped moles arcing out from under her left shoulder blade, a trail of brown specks heading south and west in such a way that if they were really traveling, they’d eventually make their way around to the general vicinity of her heart.

While nuclear meltdowns in Japan touch off fears of radiation poisoning even here in the U.S., I dry my mother off, run a towel from the top of her head down to her toes. The journalist in me longs to plug into CNN online, The New York Times, any organization that is monitoring the events in the wake of the massive earthquake and tsunami on that side of the world. And at night, after I’ve dried my mom’s hair and have her seated where she is snipping junk mail or filling in the outlines of shepherds or dancing chipmunks in a kid’s activity book, I do take a peek at the day’s news, until she needs her meds and it’s time for bed.

If only I could worry with the rest of the world, glue myself to computer screen or TV. In a way, that would be easier than what I am doing now. Worrying about the more distant World with a capital “W” rather than my mom’s intimate world, with its lowercase “w” would mean I am engaged with the rest of humanity. Halfway around the globe, people have died and continue to die, continue to be in danger. I feel I should be doing something to help. Instead I deal with Mom’s potty runs, disposable underwear changes when we don’t get there quite in time, wash her back and hair, walk her to the elementary school down the street for exercise. Such are the confines our collective life right now, with an occasional longer reach to visit a cousin or make a doctor’s appointment.

Reducing my life to these small moments, I am reminded that there are worlds within worlds, and universes within universes. How minuscule we are when we consider the larger canvasses against which we play out our small lives — like the moles on my mother’s back, a comet’s tail of brown pigments on the universe of her skin.

Text and photos (c) Beatriz Terrazas 2011

Returning as they once were

In contrast to the shells they are becoming, they have begun returning to me as they once were: the two women I call “Mom” and “mother-in-law.”

My mother was sent home from daycare last week because she was being disruptive and despite staff efforts at redirection, she remained very agitated. She wandered around in search of “her blouse,” and couldn’t be dissuaded from trying to kiss the man sitting at the table next to her.

But several nights ago while traveling through the depths of slumber I saw her, clear as day and as whole and unbroken as she used to be. She did not say a word while visiting; she was simply there, a wall of support and a symbol of love and comfort.

Earlier this week, I sat with my mother-in-law in the living room of Autumn Leaves of Grapevine. I fetched a cup of lemonade, encouraging her to lift her chin in order to drink, but she seemed to have lost the ability to sit up. Despite the strums of a visiting country music singer, she spent the better part of two hours nearly doubled over. I was unable to get her to look at me even once.

Yet, she, too, has dropped in on my thoughts recently, her hair freshly highlighted and her Clinique lipstick perfectly applied for these visits. She is prone to appear while I’m channel surfing or selecting bell peppers in the supermarket.

They are two women from different socioeconomic levels and from different cultures. One anchored me in this world by birthing me in unconditional love. The other anchored me in her family with unconditional acceptance when I married her son.

They have this in common: they are among the strongest people I’ve known. I’ve been privy to intimate struggles in both their lives – divorce, death, and hurtful gossip. Some struggles have been public, some private. But both managed to always hold their heads high despite the whispers and sidelong glances of friends and neighbors.

I do recall times when I saw each women falter, two of which made an impression on me. When I was very young, in elementary school, I remember my mother going through some kind of despair for what seemed like months. What was it about? I don’t know. But for a while I was frightened. Did I catch her crying alone, or hear her say something to my dad, something that hinted at her pain? I don’t know. I know only that I’d awaken in the middle of the night to hear her walk to the bathroom and I’d keep my eyes open in the dark, thinking if I didn’t keep watch, she might decide to leave, walk out the door — or worse. I’d wait for the rustle of her moving back to the bedroom and under the covers. Only then would I feel secure enough to drift back to sleep. She eventually came back to us as we knew her, strong in her faith, in her love of her family, but I was left forever to wonder about the dark period in her life.

The time I saw my mother-in-law stumble was when her husband died. What a rock she seemed to me then, making funeral arrangements, preparing the obituary, not allowing anyone to spend even that first night after his death with her in a house suddenly made larger and emptier in the face of his absence. Then, the day of the memorial, as we walked down the church aisle to step outside and greet those who’d come to bid him farewell, she suddenly gripped my arm with one hand and John’s with the other, and her face screwed up with pent up sobs. “I thought the tears were done,” she said. But there they were, tracking down her immaculate makeup. In the weeks to come, anger would replace the pain — anger at being widowed in her early 60s, but I won’t forget those tears, ever.

Once, I interviewed a researcher at UT Southwestern Medical Center who explained that to better cope, it’s important for caregivers to find meaning in the person with dementia at every step of the disease. And when that patient can no longer speak or walk or make eye contact, perhaps the meaning in her life at that point is to remind us – through memories of her – of who we are.

Did I summon these unexpected visits from my younger, healthier mom and mother-in-law? Not consciously, though I harbor that chronic, invisible ache of missing the women they used to be. Subconsciously, however, I am part of a wide web of ancestors who know what I need at any given time, and who are prone to sending aid in unexpected ways when I think I can’t hold on anymore.

Some days, I succumb to anger and frustration — about lots of things: the lack of empathy in society, the bigotry I see in the world, the sheer impotence in the face of my mother and mother-in-law’s Alzheimer’s. Then my familia past and present rallies with the gift of memory. I ask – no, I beg – these two women whose faces are put before me: “How did you do it? How did you cope? Where did you get the strength to put one foot in front of the other?”

They don’t speak. But they don’t waver either. It’s as if they are letting me draw on the women they were, allowing me to reclaim in their strength the spine they bequeathed to me. They simply stay and let me lean on them until I’m ready to move on.

(c) 2011 Beatriz Terrazas

The year the rubber tree plant died

One day last December I looked at the rubber tree plant that sits near the fireplace and saw that it had died. I was stunned. This plant had been with me so long I don’t even remember where it came from. It might have even pre-dated my 18 years of marriage. Its demise dove-tailed with a realization that my plants aren’t the only things I’ve allowed to languish in the past few years.

A friend I’ve known since high school was trying to find me recently because a card she’d sent me had been returned. Our zip code had changed, and I had never told her. She thought I’d moved without letting her know. Though we live a couple of states apart, we’d probably never gone more than few months without talking, and now, as we caught up on each other’s lives, we realized it had been several years since we had spoken. She was hurt because I had dropped out of her life and she wasn’t sure why.

In fact, during the past several years of dealing with parental illnesses, my husband and I have let many friendships lapse. Phoning or e-mailing is one thing. But it’s not easy to get up the energy to drive across the metroplex for dinner or a movie when most of our spare time and effort for months on end has gone toward solving caregiving issues. Sometimes I look back and am shocked anew to see the chronology of the past five years. John’s grandmother died in 2005 and immediately following that, it became obvious his mother had dementia. We moved her in with us, then into assisted living, then into an Alzheimer’s unit. Right after that my mother was diagnosed. And then the economy tanked and like other Americans, we scrambled to figure out how we were going to stay afloat.

Even during the less chaotic moments chronic questions have buzzed in the background of our lives: How much longer will my mother-in-law live? Though she doesn’t speak, walk, or even acknowledge us half the time, she seems so exhausted. She could leave us at any time. How much longer can we keep my mother functional? How will we pay for her care if we need to move her to residential care? And then there’s this: while my mother is not as far along in her Alzheimer’s as my mother-in-law is, anything can happen; the possibility that we may have to plan two funerals back to back is absolutely paralyzing.

Looking back over the past several years I regret one thing: that I didn’t reach out to friends more often. Because, while I’ve not done so, I believe that it was actually a friendship that saved our sanity during the hardest parts of the past couple of years. In 2008 we met a couple who live a few miles away and with whom we have lots in common. They began inviting us out or over once every few weeks, then once a week, even twice a week at times. When we couldn’t make it, they immediately proposed an alternate date, an alternate outing.

Let me honest: there were times when Steve or Warren would send a Facebook message or a text with an invitation and the effort to accept, get in the car, and drive the three or four miles to their house seemed too much. It seemed easier to keep our butts on the couch doing long-distance worrying over my mother who is 600 miles away or simply sinking into our grief about my mother-in-law’s rapid descent into dementia’s quicksands. Other times I was personally weighed down with misplaced guilt: how could I enjoy myself before I had figured out the solutions to my mother’s care?

In fact, all the studies I’ve read and the experts I’ve interviewed about Alzheimer’s say that patients and their families fare much better if they remain socially engaged. Still, it can be difficult when you’re exhausted or emotionally drained. It’s hard to make yourself smile when you’re so sad, so anxious about about the real and practical issues of caregiving, such as medications, money and living arrangements. On the other hand, how else are we going to refill our emotional and spiritual well?

During the course of reporting a piece about trauma, a psychologist told me that she believes strongly in the human psyche’s desire and ability to move toward healing. We are wired to move beyond the upheavals in our life — wired to hope and to experience joy and laughter.

So it is that we found ourselves many a Friday night driving to Steve and Warren’s house, our dogs in tow. There, we would drink wine and talk and laugh until our sides hurt and my makeup ran, and for a while, we would forget our problems. And then, one day late last year I was finally able to open my eyes and see beyond the immediate crises in our lives. My rubber tree plant was dead, but we’d survived a very dark period. I was immensely grateful to two friends and I felt ready to truly rejoin the world.

So this year, I’m going to try to stay better connected to my friends. And I’ll try to remember water all of my plants.

My 12 days of Christmas

My 12 days of Christmas actually began on November 30, the day before I flew out to El Paso. I had an all-day shoot in the cold, windy outdoors, and that night, while my computer uploaded photos from the day’s event I finished decorating our Christmas trees and packed for the days ahead with my mom. I tried to prepare mentally. I would have one and a half weeks with her — days that would be filled with doctors’ appointments, day care drop-offs and a search for ways to make her life more comfortable. At the end of every one of these caregiving stints, I emerge tired, but with lessons I wouldn’t have otherwise learned. This time, I was tired before even getting on that plane due to several weeks of harried work deadlines.

My second day of Christmas began when my sister picked me up at the airport and filled me in on the caregivers’ schedules and Mom’s appointments. By the time I got to Mom’s, an aide was cooking her dinner; unbeknownst to her, Mom had had an accident in the bathroom. It’s an understatement to say it wasn’t pretty, but, well, it wasn’t pretty. And Mom didn’t even know she’d had an accident. Cleaning up the mess on the floor and the toilet was my first act of caregiving on this trip.

I had just been in El Paso a couple of months before, but since then my mother has begun to require help in almost everything regarding her personal care. We’ve had to cook for her for at least a year, but now she also needs help with toileting, undressing, bathing, dressing. Her cognitive deficits are slowing her down and she’s forgetting some of the steps in the personal care processes. I’m not a parent but I imagine it’s like having a three-year-old, except that she will never learn to do these things for herself. She is, instead, unlearning everything.

Thursday through Sunday, the third through sixth days of Christmas were largely uneventful. But on Monday, the seventh day of Christmas, at around 1 in the morning, I found my mother fully dressed and sitting on a sofa in the living room. If you read my previous post, you’ll know that she didn’t go right back to sleep. I’m not naturally gifted with patience, and attempting to keep Mom in bed the rest of the night tried what little of it I do have.

Tuesday and Wednesday, the eighth and ninth days of Christmas were further tests of my patience as I made call after call to the doctor and the medical supply store trying to figure out if the prescription for a bath chair, grab bars and a raised toilet seat would be filled before I was scheduled to leave. My sister and I also discussed the possibility of a nursing home or foster home for Mom in the future, even dropped by a couple of places, hoping that that it will never come to that.

For the most part, Mom was happy that I was there every day to feed her, to take her out for a walk, to drive her to the grocery store, and to help her bathe and blow dry her hair. And every time I did one of these things for her with a smile she would thank me for helping her. I would tell her she was beautiful, and she would tell me that I am more beautiful than she. I would tell her I loved her, and she would tell me that she loved me, too. Then she would ask my name, my age.

She first began to ask these questions several months ago, and they saddened me because they were a reflection that she no longer recognized me as someone with a history in her life. But on this visit, I began to feel incredibly lucky. I was such a troubled kid growing up, and in high school and college my rebelliousness and anger challenged my mother tremendously. Yet here I had just been bestowed with the opportunity of a lifetime. How many more times would I have the chance to be of such service to another human being, let alone the mother who raised me? When else in my life would I have a chance to discern the real meaning of this season? This realization brought a quality of fullness and completion to my time with my mom. I felt that something in my life had come full circle with this visit. I would not have chosen this path, not at all. Yet it was exactly the path I was meant to walk. And every word I spoke, every breath and action I took was in synchronicity with the universe in which my mother and I were cradled. Was there any greater blessing?

I thought about the craziness of Christmas in our society, of how the more we have, the more we want. Of how tempers and anxieties flare to the point of explosiveness from Black Friday through Christmas Day, of how children and adults alike buy into the commercialism that wipes out our wallets and any sense of the difference between need and want. I thought of things I’d wished for in the past — a designer handbag, a computer, a ring, a new camera to add to my work tools. And of how receiving the thing I’d not asked for — time with the mother who no longer knows me and whose bottom I have to help wipe — trumps them all. I vowed to be truly present for the rest of the moments I had with my mother on this visit.

The tenth and eleventh days of my Christmas weren’t without challenges. On the tenth evening our neighborhood was engulfed with the smell of natural gas. We had some tense moments as I hustled Mom and her aide out of the house while trying to remember where the cat carrier was and if it was safe to start up a car in the presence of a gas main break. The gas company found no breaks, and the mysterious odor dissipated within an hour.

The 11th day brought an emergency repairman to look at Mom’s dryer. No sooner had he left than a medical supply employee arrived unannounced with Mom’s bath things. The shower head leaked so the employee had to drive across town to bring us another one, but we were able to try out Mom’s new things that night.

The next morning, the 12th day of Christmas, my sister drove me to the airport. As we pulled up to the curb I told her, “I consider this time with Mom to have been my Christmas. Everything else is icing on the cake.” I walked into the airport marveling that a human heart can be at once so broken and so grateful.

(c) 2010 Beatriz Terrazas

Día de los muertos: an offering for Maria Isela

My mother once told me that her greatest aspiration was to be a mother. I grew up with a brother and sister, two and three years younger than me, respectively, and my mother was never embarrassed to shower us with hugs and kisses, even, to our mortification sometimes, in front of our friends.

We had another sibling, a girl, Maria Isela, a twin to my brother. They were two months premature. She took a few brief breaths after entering the world. The doctor and nurse must have been Catholic because, knowing the baby wasn’t to live, they immediately named and baptized her so that she would emerge on the other side ready for eternity.

When my mother realized the baby was gone, the doctor asked, “What were you going to name her?”

“Maricela,” my mother said.

The names were close enough to make me believe in God or fate or some other universal power when I first heard the story. And I heard it often, especially when we’d visit my sister’s final resting place, marked by an evergreen tree and a small marker that reads Maria Isela Terrazas. Yet just a couple of months ago when I was in El Paso, driving Mom across town and talking about her memories of all of her kids’ college graduations, I asked about Maria Isela.

“Did you have any other kids, Mom?”

“No,” she said. And though I prompted her gently, just a bit, that memory was gone. She no longer recalled the child she had so wanted and lost.

I confess that, I too, forget I have another sister. I am told I attended Maria Isela’s burial with my father; my mother was still healing and couldn’t be there. Though I was too young to remember this, it would have been a cool day toward the end of 1964, the grass yellow and crunchy beneath my feet.

There are so many things to remember when you’re a caregiver – even a long distance caregiver – that trying to keep absolutely everything and everyone in mind is impossible. Every time I’m in El Paso I vow to visit my baby sister’s grave but inevitably time is sucked up by trips to the doctor, the pharmacy, the bank, even to take my mother to visit the one sister she remembers. Also, I’m not sure it would be a good idea for my mom to go to the cemetery; if she remembers her lost daughter now, she might relive the pain as if the death had just happened, and I don’t want that.

But guilt does strange things to you. One night, after I’d put my mother to bed, I lay in the dark unable to sleep, the worries spinning through my mind. How long can my sister Angélica juggle her life and be Mom’s main caregiver? If we need to move Mom to a home at some point, how in the world will we be able to pay for her care? If we are able to somehow – miraculously – care for her at home, there are repairs her house must have. How are we going to pay for those? More immediately, where did Mom get all those hard candies she’d hidden under her pillow to eat in the middle of the night? Did I get them all? What if I didn’t and she chokes on one?

And right in the middle of obsessing over things I need to do and things I may have missed, I suddenly remembered Maria Isela. My little sister! How long had it been since I’d thought of her? Why, I hadn’t been to her grave in years, maybe even decades. And though I thought myself far beyond night terrors, I suddenly had a vision right out of Toni Morrison’s Beloved: my baby sister, a grown-up ghost, rising from her grave and moving along the Rio Grande, walking into the house, down the hall, past Mom’s bedroom and right for the one in which I lay. How could I have forgotten her?

I pulled the sheet and bedspread up over my head and lay there trembling. I cried. And then I feel asleep.

Come morning, I felt better. But I had to acknowledge that I need to let guilt go. In caring for my mom, I’m not deliberately ignoring other things and other people. Like other caregivers, I’m just doing the best I can juggling priorities. And that, just as much as the dead who’ve gone before us, is a part of life.

Today, on Day of the Dead, I offer Maria Isela the one nugget within my reach to give, the gift of love: Mom loved you. She loved you very much.