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

A Latino family’s story about Alzheimer’s Dementia

Tag: love

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. 

 

Silence as testimony

Consider my silence a testimony on its own. With two languages at my disposal, sometimes words fail me anyway.

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.

Code

A friend sends me a birthday card with a piñata on the cover and the words, “There ought to be more days when you can whack at something with a stick.” I laugh because it is code for “This is how well I know you across the miles.” She knows that some days I could take a stick and whack it at something from sunup to sundown.

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

Hermanas

Growing up, they were more than sisters -- they were best friends. Several years back my tia Blasa (right) had knee replacement surgery. My mom did not leave her hospital bedside for nearly an entire day except to go to the bathroom. She sat there and prayed for her sister. Now, in the wake of a second knee surgery, my mom only says, "What's your name? You're so pretty. I like your blouse, your pants, your shoes." She even pointed to her scar and asked, "Does that hurt?" Still, I'm glad I have this moment of them at Blasita's rehab facility. Text and photo © Beatriz Terrazas 2011

The texture of love

Mom, spring of 2011.

 

Sun-cooked car beneath my palms. Pea gravel on my knees. Love, I’ve discovered, has many textures.

Last week, my sister called Mom’s house to tell the caregiver she was on the way to pick them both up. The caregiver said, “Your mom went to bed already.” It was 6 p.m.  The coloring books, the grocery store flyers, the scissors had been put away. My mother’s brain no longer compels her to color or snip junk mail for hours on end. When the brain says stop, she stops. Nothing more to do but sleep. When my sister told me this, dead leaves whispered beneath my feet. My heart stuttered. The days grow shorter, the tunnel we walk more narrow.

Mom needs to be kept active, to get some kind of mental stimulation, none of which is the care agency worker’s job. Her job is to cook a meal for Mom, to help her with toileting needs, to help her get up from the couch if she can’t do it herself. Medicaid won’t pay for more than that — and only for two hours per weekday of it, at that. There are people with greater needs, we are told; because my mother is mobile, can walk, can laugh (though less and less) her needs pale by comparison.

I asked the home aide once, “Did they tell you anything about Alzheimer’s patients when you started working here — about what the disease is and what it does?” They hadn’t. Not for aides to know why someone needs help, only that she needs help, and how to help. I got books — Coach Broyles’ Playbook for Alzheimer’s Caregivers, (a mouthful in Spanish: Plan de juego de el Entrenador Broyles para Cuidadores de Personas con la Enfermedad de Alzheimer), and The 36-Hour Day (Cuando el dia tiene 36 horas). Two copies of each, one for the aide, the other for the cousin who helps us with Mom. “Read them,” I said, “so that you will know what I’m talking about when we discuss my mom.” The aide said the books were interesting; my cousin said they made her cry.

Some days, the questions crowd everything else from my mind: Were it not for the hours she spends at daycare where she socializes with more than her family, would my mother’s brain atrophy more quickly? What will happen when we can’t care for her at home? We toured one place, my sister and I, a place that might accept Medicaid. The woman who showed us around was all business; that is, fifteen minutes after we started, she had to move on to someone else’s problem, someone else’s mother. But this is my mother, I wanted to shout at the curves under the dress, at the rose-cremed smile that didn’t reach the eyes — my mother! Still, I understood, reminded as I was of my news days: my camera trained on a man carrying a dead child washed up out of a creek after a storm, on a woman pacing the sidewalk in front of the house where family members were murdered. I could not function if I’d thought of them as my child, my family — mine.

No, mine is the crunch of green fruit that puckers my mouth, the rippled cloth on the table that won’t lay flat under my fingers. I prefer love when its texture is pressed linen, mirrored ocean. Some days, my greatest wish is to feel the slide of ripe apricot against my teeth.

© 2011 Beatriz Terrazas

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  

When there are no words

Sometimes, it’s just too depressing to write about this journey. I can’t find anything good to say about it, can’t find anything redeeming about what we’re going through. Then I remember that sometimes it’s easier to show than to tell. So here are a few images focusing on some of the brighter moments — those instances showing some of the skills Mom still has and moments in which she still marvels at the world.

Text and photos (c) Beatriz Terrazas 2011

She can still tie her shoes.

She can still brush her hair.

She can still put on her hair clips.

She won't leave the house without her jacket, but will go for a walk, look for birds on a wire ...

... and make it all the way back home.

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