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

A Latino family’s story about Alzheimer’s Dementia

Category: Uncategorized

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

Image

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. 

 

Reflections

Yes, it has been months since I posted anything here. Not because I haven’t wanted to do so, but because I haven’t had the emotional energy to do so. Those of you on this journey know you hit spots where all you can do is put one foot in front of the other, move forward one step at a time, looking toward a day when you’ll awaken rested and refreshed.

This has been a trying year. My mother was hospitalized twice, albeit briefly. I wasn’t needed at her side as her illnesses were fleeting, and in fact, the second time doctors couldn’t even figure out what caused her to experience a couple of days of lethargy. Had I been there, I would have said, “Don’t you think it’s just the disease?”  But I wasn’t there, so I won’t second-guess the ones who were. I suspect that despite their expensive educations, many doctors still don’t realize the many ways Alzheimer’s affects the brains. So they have to run their tests, do their analyses, and look for a cause. I get it, I do. If I could find the switch that would turn off the dementia, I’d do it. But no matter how many MRIs doctors order, they’re not going to reveal an improvement of her brain.

My mother-in-law died at the end of March. It was as sudden as it can be for someone with dementia. One moment she was breathing, the next moment she wasn’t. And despite our awareness that she could leave us at any moment, we were still unprepared. (Is anyone ever prepared for a loved one to die?) I stood with my husband in her room, touched her arm, and in my humanness wondered, “Really? Did she have to go so quickly?”

My husband said something to me shortly after his mother’s death that has proven wise and has been a help to me. He said that as we age we just need to know that we will be getting the phone calls about our elderly parents. There will be the 180-degree pivots to make when something happens, and you can’t wring your hands or stress over the decision to be made every single time it happens. You just need to act, know that whatever decision you make is the best one you could make at that moment, and then let it go and move on. I know it’s hard to do, but it has helped me to accept, finally, that there is a new normal, that difficult times are going to happen, and that while my stomach may be tied in knots for a while, the knots will eventually loosen.

Between travel to be with my mother and helping my husband deal with his mother’s funeral, her exit from residential care, and the estate-related paperwork that has piled up in our home office, I’ve also been rather busy with work. So much so that when I received a check in the mail for a contribution to a blog I contribute to, I thought it was an accounting mistake. I’d forgotten about an essay I’d submitted. I didn’t realize it had been published more than a month ago. It was a piece about a memory of my mother when I was a child, and I’d struggled to find a home for the essay. When I submitted it I took my husband’s advice and told myself: If it’s meant to be published, it will be, and if it’s not, so be it. Then I let it go, and moved on.

I’m sharing the link to this piece because I know many of you have had a similar experience. As more and more memories slip from our loved ones’ minds, we can’t help but keep searching for that reflection of ourselves in their eyes, hearts and mind. Here then, is the link to The History in Her Skin: http://www.mamiverse.com/mother-daughter-relationship-43176/

In memory of one of the strongest women I was privileged to know

In memory of one of the strongest women I was privileged to know

My mother-in-law lost her battle with Alzheimer’s Friday, March 29, 2013. While we’re saddened by her passing, it’s a huge relief that she’s no longer struggling with this dehumanizing illness. We will bury her later this week, and in her honor, I’m reposting a Mother’s Day piece that I wrote two years ago about the relationship I had with one of the strongest women I know. While we had our differences, I can honestly say that she was more than my mother-in-law. She was someone with whom I could travel, shop, watch movies, discuss books and news. She loved attention, and I bet she was giggling a little bit at the fuss caused at the residential care facility when the wonderful hospice nurse who called in her death inadvertently pressed a wrong number, summoning several uniformed officers to her room.

She wasn’t just my mother-in-law; she was my friend. Godspeed, Nina L. Doty. 

the enduring power of story

the enduring power of story

I’m cross-posting this from my Website blog because it’s about how personal histories sneak into and affect every circumstance of our lives — including the instances when we are struggling to be the best caregivers possible. My mother was briefly hospitalized at the beginning of February while I was away from home and scheduled to speak at an event. Here’s what happened.

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.

EOAGH journal issue on dementia

Last year I was asked to contribute an essay to a special issue of EOAGH, a journal that publishes prose and poetry, as well as literary criticism and interviews with writers. In 2010 I wrote quite a bit, published quite a bit, and felt emotionally wrung out. I designated 2011 as a year to let my mind lie fallow, to give myself time to refill my emotional and creative well. So I agreed to contribute to this issue then forgot about it until early this year when editor and poet Susan Schultz asked what I’d written. Then I had to dig deep to find the words that would convey what it’s like to lose my ability to communicate this sense of loss that our family is enduring. It seems that as my own mother is losing her ability to speak, to form sentences, to communicate what we understand as coherent thoughts, I am going through the same thing, though for different reasons.

Read through this issue, through the poetry and the prose, and I’m certain that at least some of it will be relevant to your own journeys.

http://eoagh.com/?p=1371

Mom enjoying watercolor painting

Last week I got to spend some time with my mom before and after I traveled to her hometown of Las Nieves in the Mexican state of Durango. Prior to that I’d produced a video on the Alzheimer’s Association and in the process observed a Memories in the Making class at the association offices in Fort Worth. The students made some beautiful paintings during that class and I thought I’d see if Mom might enjoy painting. As soon as I demonstrated how to dip the brush in water and paint, then apply it to paper, she took it from my hand and did it herself. Here is a series of very quick snapshots of her painting.

Image

ImageImage

Text and photos ©Beatriz Terrazas, all rights reserved

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.

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