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

A Latino family’s story about Alzheimer’s Dementia

Tag: caregiving

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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Mom and her roses

Some days on this journey I don’t want to look forward. The future is too frightening when I consider how much more difficult this path is going to become. I want only to look back at the better times. Today being the day before Thanksgiving, I am filled with gratitude for the parents I had, especially my mother, and for the opportunities that her illness has presented me in terms of spiritual growth. This photo was taken on her birthday in spring of 2010.

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 ones who have already gone

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

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

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

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

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

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

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

El último baile

While I was home in September, a cousin held a quinceañera for one of his daughters. At this point, my siblings and I tend to think in terms of “last times,” as in, this could be the last time Mom goes to a family dinner, or the last time so many of us family members are all together in the same place. It’s the same reason every time I’m with her, I make sure to tell my mother “I love you,” because I just don’t know what lies ahead. So we decided that we would take my mom to the pachanga, at least for a while. She could talk and visit with her brothers because she likes talking to people even if she doesn’t know who they are, and she’d get a kick out of the familia taking to the dance floor. So, here’s a two-minute video of scenes from the party. No real audio — sorry — but the woman in the tan jacket is my mom. You can see her talking to one of her brothers and kissing him on the cheek. And yes, she did get up and dance with some of us. She’d tell someone at the table, “Watch my purse so I can go dance.”

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

Sea change

When I was home a few weeks ago, I heard my mother talking — to herself, I thought — after we’d put her to bed. I peeked in her room and saw her tucking in beside her the old doll that usually sits on the nightstand. “Is that cold air hitting you?” she asked, arranging the covers around plastic-limbed doll. My heart skipped, and when my mom saw me, she told me to cover the image of Jesus on the wall because he, too, was cold. Obediently, I pulled it from the wall and settled it on the floor. “The draft won’t hit him there,” I said.

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

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

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

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

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

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

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

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

What price peace of mind?

When you have a parent who is slowly dying, you face long-term grief and its toll on a daily basis. But between the busyness and the sadness you can’t help considering the roll of the biological dice, as well. My parents have both reached 80, and my mom is declining a bit every day. My father has slowed down considerably, but is in fairly good health and stays very active. Longevity could be in the cards for me, but will I age like my father, or my mother? Will I get lost one day while driving in my car, or suddenly forget who my husband is? The idea terrifies me. And no, in this case, I don’t really want to know the odds according to science. Frankly, I’d rather not think about it at all.

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

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

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

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

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

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

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

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

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.