After Alzheimer's is Forever

Memory
Perspective and memory pulling in opposite directions.
Michael Sedano

Five years takes its toll on one’s spirit. That's the most consequential part of living through dementia of the Alzheimer's type. Increasing numbers of people will get diagnosed with dementia in coming years. This means that same increasing number of people will be challenged to become caregivers.

A person recovers from dementia's financial costs and other insecurities. A widower's heart resists healing. Tangled memories unleash unruly emotions. Dementia sends a caregiver into perpetual mourning. Every day they live with Alzheimer's, caregivers mourn both the progressions of the disease, and the knowledge death is inevitable.

Barbara died a year ago next month, February 2023. It has been a terrible year and happy new year, gente.

Alzheimer's doesn't kill. Dementia does things that cause drastic behavioral changes that inevitably collapse the individual's ability to live. Barbara died with Alzheimer's dementia when she lost interest in food and could no longer move about on her own. 

I write this column to encourage caregivers present and caregivers-to-be to take pictures of their spouse to enrich memory and hold perspective when you'd prefer to forget the end days. The end days, so enormously bad, dominate how one feels, and cannot be the singular memory of a person you promised to "love, honor, and cherish, all the days of our lives, until death parts us." It's vital to remember all the days.

Taking a diachronic view offers healing perspective seeing your spouse at fractional instants in your caregiving career: when things were good; when things were not as good as before; when things fell apart.

Christmastime was Barbara's favorite season. I thought I'd developed perspective on our Alzheimer's career and I'd begun a new life. A week before Christmas eve, my body remembered and for days a tangle of emotions and memories sent my blood pressure skyrocketing. My heart would start pounding, shortness of breath worried me enough that I phoned my heart doctor. 

Memory in mourning pulls a person into disordered emotional concatenations remembering disparate events in a swelling wave of tearful emotions that, in my case, nearly overwhelmed me because it is Christmastime. Nontheless, I continued in my daily activities like playing on the Face and writing a book on After Alzheimer's Dementia, seeking solace and perspective, but for that welter of memories I was drowning in.

I'm glad I take photographs. I grounded myself by searching my archives for key moments in Barbara and my recent past. I found 3 fotos.

The first foto my search showed me I took in Mexico City in 2008. The vacation was Barbara's birthday present. In the foto, Barbara smiles standing in front of a Diego Rivera fresco of a teacher in a rugged rural landscape. Barbara didn't like her picture taken and the vibrant yet chagrined smile on her face reminds me she wanted the foto but didn't want to be in it. 

How were we to know the import of this pose?

Shortly after Barbara was diagnosed "dementia of the Alzherimer's type", we sat quietly and I told her she had Alzheimer's, that eventually the disease would rob her of memory, that she would forget our daughter and granddaughter, and forget my name and who I am. The disease had already dulled her emotions and she silently shook her head at the all the stuff in the books that came true.

I asked her how she wanted people to remember her. Without hesitation Barbara looked at me and spoke clearly and strongly, "I was Amelia's mother. I was Charlotte's grandmother. And I was A Teacher." Her voice grew with emotion. She sat bolt upright, spoke fiercely, eyes burning with pride at being "A Teacher!"

I look at a photograph I took of Barbara on New Year's Day 2020. Barbara was diagnosed in 2018 yet her symptoms had erupted in 2017. She appears happily engaged with an epiphyllum blossom, smiling as she reaches to touch the flower. I remember inviting her outside and we walked hand-in-hand out to the garden where she noticed the flower right away. I remember she enjoyed the flower this moment then, because she lost interest, she quietly returned to the house. She didn't share my excitement at the out of season beauty in her once-favorite color.

I look at a photograph I took of Barbara on her birthday in 2022. It is her 78, the last. Barbara wears light clothing showing her thin arms and wrinkled skin. I dress her now, and the garments are my choice.

Barbara cradles a beautiful bouquet of roses and lillies, a gift from the friend who introduced us in 1968. Barbara's expression is joyful but only I know this. Others see pain, agony, suffering in her eyes, mouth, and wrinkled brow, suffering in her thin frame, "something wrong."

Alzheimer's does not "rob" a person of her essential self. Barbara loves these flowers. She loves them in this instant then this instant expires. A few weeks earlier, Barbara would exclaim the beauty of a vase of flowers every time she walked past them; they were new to her every view, a discovery. She would be curious about them. 

A caregiver sees truth in the foto. I see the joy in Barbara's eyes. Dementia did not take Barbara's love for beauty and flowers, even if the name of our friend is just sound. I see my wife's frustration because she can't express her joy. Barbara no longer forms sentences to express emotion. We do a thank-you video and Barbara repeats my words deliberately, "thank you for the flowers." In these days, her face remained expressionless when she was awake. And then these flowers arrived to awaken her love of beautiful things.

There's a literature of dementia where writers treat the person as a shell of their former selves, or as disappeared from themselves. That's really unfair to the person stricken with this foul disease. Barbara never went away. In every moment of early months, we enjoyed hours listening to oldies, remembering the words. Later years, we sat in the shady patio with friends,  or just we two, looking at her wildflower bed and hummingbirds at the flowers. Barbara was always present. 

That's what I see in these three portraits. We were married 55 years. After 49, Barbara didn't remember any of them. Her essential goodness, and kindness. allowed her to trust me and let me help her survive as much as her brain allowed.

July 2008. "I was A Teacher."

January 1, 2020

May 14, 2022

Barbara began in-home hospice in late January, 2023. She died on February 4, 2023. 

Barbara Sedano. ¡Presente!

After Alzheimer's: Ambushed by Memory of a Place

Memory

Moving Back into Reality One Mall at a Time

Michael Sedano

Only once in our Alzheimer's dementia career did i lose my Barbara in public, during the third year of our five-year passage. By this year, the disease has taken away swaths of vocabulary, debilitates her gait and balance, neutralizes emotions, and constrains Barbara's sociability. Dementia causes profound change, but that doesn't alter one fact: Wherever we are, Barbara is present, observant, and happy. 

Barbara enjoys interacting in the world as she finds it, so we go places and do things. We walk, gain visual stimulation, interact with people, read words connected to things, make small decisions in a restaurant. We're becoming less competent but the world is kind to people like us, generally speaking.

 

One day, I take Barbara to J.C. Penny in the gargantuan Arcadia mall. I'm happy that Barbara selects a garment to try-on. She never liked shopping but this represents decisions and persistence of thoughts, i.e., memory. I'm acutely aware of our progressions.

There's a chair near the sole door into the changing rooms where Barbara will undress herself, don the new garment, undress the try-on, and put on her street clothes. Thereafter, she'll exit the only door. Barbara will see me, I'll see her. I'll take her hand as always, and we shall stroll into the next moment in this place. I am confident Barbara will perform these physical tasks, in her own time, for sure, but she can do it. I don't measure her absence.

 

I hear my name called over the store sound system. Please come to a register far from where I sit near the fitting room's only door. I get to this place lickety-split. Barbara smiles seeing me as I approach. Barbara recognizes me even if she occasionally forgets my name and that we are married, that I am her husband. She trusts people.

 

My immense gratitude to the clerk who recognizes Barbara's confusion then acted so effectively, clashes with my panicking emotional turmoil. Relief passes to realization my negligence hasn't turned into horror, a worst case scenario you hear about Alzheimer's Dementia. 

 

I never want to feel like this not ever again, please, I tell myself, as Barbara and I walked into the mall that day, as if nothing had happened in J.C. Penny. 

I don't go into that store again, until Christmas week.

 

This afternoon, my friend Thelma and I walk into J.C. Penny. Memory nudges then floods across my eyes. Walking into those double doors from the parking lot, I hesitate, recoil, set my feet to flee. I'm overpowered feeling again that instant of fearful dread knowing a helpless woman wandering lost could have attracted evil people. I don't want to be here.

 

Off to my side, daylight coming through double doors exiting to the parking lot pulls my eyes outside. Barbara would have gone to the light. Strangers are out there. I take a deep breath and exhale, wanting to expel the memories. I cannot, the power of this space overcomes me.

 

Thelma and I stroll into the mall like any two Christmas shoppers. I look into stores and rest area niches wondering, would I have found Barbara there? How could I not see Barbara leave? There is only a single door. My mind has gotten trapped between now and that moment four years ago.

My friend and I go shopping and when it's time, we head back the way we entered the mall. For the second time today, I walk into J.C. Penny. I concentrate on getting through this place before memory ambushes me again. All I want is out of here. 

We pass through those double doors and I've forgotten where I parked. Thelma takes my hand and guides me to the right place for me. 

Deontic Choice: Readiness Is All

Readiness Is All: Two Essays on Memory

Michael Sedano and B. Nicki De Necochea

The Fall of A Butterfly

Michael Sedano

There is special providence in the fall of a sparrow. If it be now, ’tis not to come; if it be not to come, it will be now; if it be not now, yet it will come. The readiness is all.  

Hamlet.

If it be now, ’tis not to come

if it be not to come, it will be now

if it be not now, yet it will come

The readiness is all

Brilliant orange wings lay outspread upon la tierra's rough brown garden detritus. It's this butterfly's habit, resting like this. Naturally, I have hundreds of fotos of orange butterflies resting. But not this one, I don't have its foto. I must go down to la tierra again, and all I ask is the butterfly not move.

The Gulf Fritillary doesn't flinch when my lens approaches. I think this is one of those serendipitous meetings producing symbiosis between butterfly and camera, a social contract: one agrees not to fly, the other agrees to share the joy of a close-up photograph. It's the ineluctable nature of garden walkabouts, butterflies come in beauty, people come in wonder. 

The butterfly's four wings show little, if any, wear, and no tear. The edges are pristine, no perforations anywhere mar the perfect orange expanse stretching between branching venas. The butterfly is dead.

I take the Gulf Fritillary into my palm, turn it toward the sun where mosaic underwings glow with the sheen of burnished silver. It's a color the camera cannot capture, the spots bear an inert, dull grey-white coloration. 

Life expired here sometime in the past few minutes, a "now". Now, no immortal hand nor eye can recapture flight nor fluttering wings. 

Ants will find the butterfly's remains in the branches of the casí-flowerless Buddleia bush where I dropped the empty shell. A dearth of flowers could mean this Fritillary starved to death. Any number of somethings could have brought the butterfly to earth. To my eyes, it's dead before its time. I call this less Providence than more nature's deontic logic, yet it will come.

It came in 2023 to my house. The year began in a special providence, I knew this would be our "now". All we had was Time. I lacked Hope and didn't need Hope. After February, it was not to be. I'm glad we're almost done with these four numbers, 2023. 2024, it will come.

Memory: written in 2019 when De Necochea was living with Alzheimer's Dementia

MY MOTHER'S HAND

By B. Nicki De Necochea

As I was writing my Christmas cards this year, I was also appreciating that I do love the “old school” ways of communicating from brain, to hand, to pen to paper.   My handwriting is changing, not so perfect as in the old days, but nonetheless it’s mine, and like my personality, laugh, and smile - and even my fingerprints, unique.  I also now do my mother’s cards to the remaining friends on her list.  She is 91 this year, so the list of her friends is getting shorter.   This brought to mind a reflection on my mother’s once gorgeous handwriting.   

She can no longer even sign her own name, and likely cannot tell you what her name is if asked on a day she can’t recall it.  However, my personal archives of her writing are now so representative of who she was, and no longer can be, in a verbal sense.   Her penmanship was elegant, and her messages deep and meaningful, her heart and her hand immediately recognizable.   When I now run across a handwritten recipe  or note, I  know it was hers even if not signed, because her writing had its own personal identifiable strokes, and pace, beauty and grace.   

It’s as if I’m looking into her face, when I come across her writings on notes, cards, her old address books, and handwritten lists.   It’s so thought-provoking that no one has identical penmanship, even given that the manner in which we were taught longhand likely had all the similar steps, and instruction and basis for connecting the letters of the alphabet in a harmonious twist of the hand, grasping the pen or pencil and gliding the words across a page. And like artists painting the same landscape, the outcome will be unique to the artist or the writer.  

Yes, we could all write the same words, sentence or paragraph and the words would have their own personalized  look and feel, as our brain’s recall makes connection from head to heart to hand ----the loops and dips, curls and feeling of thought laid down as  a beautiful form of communication.   To me, her lovely and thoughtful wisdom, once imparted on the special Christmas cards and birthday notes, in which she conveyed her love, and sage wisdom are like the works of art of known masters, no longer with us but no less appreciated.  Her ability to write has long since left her, as those parts of her brain have stiffened or dissolved along with the needed cognition, now just another one of her lost arts.  I’d give anything to get one last card filled with her wisdom, heartfelt desires for me, or wise conveyances.   

So, let’s not take for granted our ability to write with love, to share a note that expresses who we are in longhand.  I say, write for those who will outlive us, to share exactly what we are thinking and feeling in the moment.  Let’s all leave behind some semblance of who we once were, as indelible and retrievable.  May my great grandchildren who I will likely never know be able to hold my words, executed in my own hand, in theirs.    I do my share of contemplating how short life is, and thinking about how I will be remembered.   And, it’s OK if people remember how I was so “old school”, handwriting my Christmas cards, long after it was “the” thing to do.   Instagram, email, texts and Facebook all have their place in this new quicker is better electronic age.      

Handwriting is an art form, but also a heart form.   I’m curious if my sons have or will save any of my writings like I saved my mother’s …to appreciate them in the future in which I will not be.   Daughters perhaps might be more likely.  If you are of the era of handwriting and penmanship, continue your long-handedness.  Put your thoughts to paper without the need for any technology other than your own hand, and brain power, pen and ink.   There’s a beauty in it I can’t describe, but can only appreciate.   

So thank you to my lovely mother, for taking the time to pick the card, write the letter or note to be re-read and appreciated as well as coveted so many years later.  And, even more appreciated now that she can no longer pen her own messages.   I cherish her written words but also her “hand”, and the lovely penmanship from an era where penmanship mattered.   

I encourage you to write to your loved ones, little notes, cards, messages.    And not just the mothers. Dads, consider taking the time to feel the feelings, share the thoughts, and leave the legacy in your own handwritten expressions for your children, and grands.  What I wouldn’t do to have a handwritten note of my father’s.   

Love, peace and everything else!  

B. Nicki De Necochea is a So Cal artist, residing in San Diego who embraces her art and writing as a form of creative self-expression.   She is a painter in oils, acrylic and mixed media.   Her writing addresses personal themes and experiences as another vehicle for using art for growth, human awareness, and for her own self-discovery.

After Alzheimer's: A Beginning

memory

Back Among 'Em 

Michael Sedano 

There's this euphemism I'm going through right now, After Dementia. I am a combination Rip Van Winkle and Miranda, awakening to a brave new world after 55 years living a dream, the final five years puro nightmare. Our progressive decline got saddled with GOPlague-induced isolation. It was the worst of times in the worst of all possible worlds. 

Now comes after dementia. Unlike the disease, there's no gradual transition, no pause nor time-out. The caregiver career is done, whatever's next, you're in the middle of it now. Unskilled or anachronistic.

I have to fight off future shock from all this change coming all at once. It's going to happen to all of us living with Alzheimer's, that brave new imposition.

Getting that diagnosis, "Dementia of the Alzheimer's type" signals the start of a new career, a caregiver's life of incessant tasks and mostly doing it alone, twenty-four hours seven days. Then absolutely it's over. What to do? Where to go? No place to be. Nothing to go home to.

So go. 

Five years of grieving take a toll, and human resilience says ya basta. Mira nomás, Miranda sees it, "O brave new world to have such creatures in it!" Has the world changed much since 1968, just before I met Barbara, and I was socially competent? I was also 23 and a total mocoso.

Poets, in my case, are the such creatures in it, and their world today is the community room of Altadena Library. Except for the night Barbara entered Memory Care in 2019, I had missed every poetry reading in the world for five years.

Saturday, February 25, 2023, I stepped into the poetry reading site in Altadena, not far from my home. I took a breath; I was back. And for sure, mira nomás! There sat Peter Harris chatting with my friend Jean, who'd invited me into the world. 

Peter Harris serves as Altadena Co-Poet Laureate, with Carla Sameth, who sponsored the day's reading. The night Barbara entered Memory Care--one of the lowest points in my life--I attended a poetry reading (link) featuring Peter Harris and that pulled me up. Today I am stepping  back into the world, things are looking up. Thanks for being there, Peter. Balance has meaning.

Back in the day--pre-Alzheimer's--I had this goal to capture the perfect public speaker foto. A poet, for example, making eye contact, mouth saying something, eyes, face, hands and body in an act of eloquence and expression. In my view, Oracy is equivalent to Literacy and Numeracy as fundamental social competencies, and I want to take its picture. I used to want to do that for a living--be a speech teacher.

Every poetry reading, I get close to what I need. I need, not want, that foto. Y sabes que? I want and need to take fotos of poets. When I walked into the Altadena library it was as if five years ago was last week. But I have a camera with new capabilities. 

I was warmly greeted by Xochitl and Carla to begin the day joyfully, a big hug across the row of folding chairs, tú sabes, a joyful howyadoing. They know me. Barbara loved poetry; she hosted Xochitl-Julisa Bermejo’s publication party for Posada Offerings of Witness and Refuge (link) at CasaSedano.

Poets are good people and they welcomed me back. It is good being back, camera in hand, goals in mind: capture a reader's expressiveness, see the world as you find it.

Happily, La Bloga-Tuesday is pleased to share three of the works gente attending Altadena's Saturday reading heard, along with portraits of the poets presenting their work.

Carla Rachel Sameth

Carla Rachel Sameth

We Used to Argue Over Hearts

I called my older sister over and over again whenever I ran away. The first time, six, crossing the street to the little park—but then I couldn’t come back because I’d remember I wasn’t allowed to cross the street by myself. I sat on a pile of leaves sniffling, imagining my sister rescuing me. 

When I was a teenager, she went away to college. I’d telephone her, my complaints a steady pitter-patter or a torrent, depending on the temperature at home. 

My brother taught me how to avoid recurrent nightmares by focusing on the scariest moments before going to sleep. I was terrorized for a period of dreams about “Bunny Goo,” who was either a tall bald white man who wanted to take over the world or a sticky tar that got on the bathtub faucet and caused it to overflow. 

My younger sister gave me imaginary sleeping pills, told me just breathe and think about ocean waves and Mt. Rainer, ferry boats and sunsets over Puget Sound. She teaches meditation now. We were so young then, turning to the closet for refuge.

My dad was a high school teacher who used to say with liberty and justice for some when forced to recite the Pledge of Allegiance. He was my favorite dance partner, and I felt graceful on the floor with him at weddings and Bar Mitzvahs. My mom went out for Shirley Chisholm. She worked, went to school, and took care of the four of us plus my dad. Later, with almost all speech robbed by dementia, she found the words, God that man is repulsive when pre-2016 Trump was on television. 

I miss my mom and dad, even the fights and the television blaring news, my dad’s temper. Our stuffed animals, large, wise and plush, sat sentry, while we ran amok. Eat a thigh instead, dark meat is juicier. We used to argue over the hearts and gizzards; now no one wants those parts. 

--

Carla Rachel Sameth, MFA

Co-Poet Laureate for Altadena, CA 2022-2024

Author of What Is Left and One Day on the Gold Line: A Memoir in Essays

carla.sameth@gmail.com

Noriko Nakada

Noriko Nakada

Hey Dad,

I will not be sending you this letter
because I fear that the end of this project
and the end of your life
might intersect
that the end of the pandemic
won’t come before our next visit.

I can’t remember
what we talked about the last time
I saw you in person.

I have never been away from home this long
if home is Oregon:
land of pandemic protests
fire and sacred ash
friends and family
religion and hate.

All of the reasons I stayed/left in the first place.

You know this.

You moved there despite it all
shifting our family’s proximity to whiteness
leaving me to ask myself:
Who are my people?
Where is home?
Questions embedded in my blood.

It might not have mattered
where I was born and raised.
The questions we ask might still be the same:
How is the weather?
When will I see you again?

Romaine Washington

Romaine Washington

Jazz

 

poets!

we too

            be jazz

musicians

            sassafrassan rhythm

improvisin’ life

            and blowin’

we too

            be rubato blue

Sahcmo 

            feelin’

Coltrane

            reelin’

  lovers.

and syn/

            co

pa 

            tion

heavy down

            beat 6/8 time

waitin’ 

            tempo up

                        breathin’ breezy easy

free

            we be

free

            we be

free 

            we be 

jazz!

Xochitl-Julisa Bermejo

Xochitl-Julisa Bermejo

What Was Meant To Be

 

            After Eternal Sunshine of the Spotless Mind

 

A murder of bullies menace Joel 

into hammering a dead bird. 

Deep in a boyhood memory, he’s cloaked

in a red cape. Clementine meets him there 

crowned in a pink cowboy hat. 

She reaches for his hand and says let’s go. 

Joel wants to stand up to the boys, but Clem 

says it’s not worth it. “They’re not. Worth it.” 

 

Still, they were always meant to break up.

 

You and I were never meant for more than 

a waxing moon. But the fullness of your kiss 

still glows brilliant.

 

You shared your Coca-Cola with me.

Took me dancing. Spun me at a concert 

in the park on a cool summer night. 

Said you couldn’t believe no one else 

had ever spun me before. True and not true. 

There was always my mother. But this. 

This was different. Wasn’t it.

 

Afterward, we fought mouths spitting hot in the street. Still.

 

If we stop right now, grab our belongings, 

and exit the vehicle, that can’t erase the laugh-scream 

that bellowed from my body as we chased a track 

spinning fast around a mountain. The path

was always set. The ride was always meant to be 

exhilarating. 

 

When I was little I wore tight braids 

and was told to not be a bother. I imagine 

your wild curls growing big with every harsh word

that said you weren’t enough. But for a moment. 

We reached for the other’s hand. Worth it.

-- 

Xochitl-Julisa Bermejo

Author of Posada: Offerings of Witness and Refuge (Sundress Publications 2016)

Co-founding member of Women Who Submit

Technical Notes

I use a Canon EOS Rebel SL3 body with a Canon Macro 100mm EF lens. 

All fotos exposed at f/2.8 1/250s ISO25600

New camera bodies like this SL3 have that sensitive ISO capacity that serves well in the deep dark of the library basement space. At 1/250 of a second, gestures and facial expressions hold focus without blurring, provided the hand-held guy doesn't move.

This camera also takes up to five exposures a second, offering the best chance to capture an expression-in-the-making, as well as lots of closed eyes and "just missed it" frames.

Todays readers exhibit wel-honed skills that honor their work. Poets owe themselves and their arte effective oral interpretation. 

None of today's artists do "the voice" but read with natural cadence elevated to the quality of art they make. Eye contact perpetually bedevils some readers. They actually read off the page more than they share their stuff.

I encourage poets to look at the manuscript, memorize the final words of the stanza and the first words of the next, look up and say what you've just committed to memory. Giving your audience that eye contact and personal directness not only informs your ethos for the listener, it gives the hapless photographer an extended opportunity for several frames, and maybe that magic moment of perfection!

Poets should become camera aware and speak to the lens several times. One of these days, some photographer will get the right portrait and you'll have the back cover of your next book.

For the photographer it's puro enjoyment, listening to a writer's cadences, the syntax in an expression, observing how the poet moves into and out of the page to the audience, predicting the moment in the unique expression of an unheard poem, then pressing the button.

Sitting By the Fire In Hospice

 Michael Sedano

Barbara has entered In-home Hospice Care. 

She has lived through Alzheimer's Dementia as well as she could, like she did everything. Took everything it had to throw at her, held her head up and her back strong against the battering from her world.

She won't sit by the fire, I'll be the one thinking of the glad look her eyes once had, the joy she invested in having people around for every big festive event.

Over these past few days, Barbara's had people around for the biggest event. Barbara's first teacher colleague hobbled into the room with her own caregiver. The first couple Barbara and I had dinner with when I got back from overseas spent time with us. Carolyn returned the next day to sit Vigil for hours with her friend from so long ago when they and we were so damned young.

My friends, I'm sorry you suffer for us. Your eyes mix fear, pain, sorrow, knowledge. Not long.

Our friends smile and hold up their heads to support their friend Barbara. We sit around the hospice bed and remember the funny things, the great loving good times. I know that they get into their cars and break down in tears at what they've seen.

It's best we remember the funny times.
----

Hospicing

No fear here. I phoned the agency recommended by the Dementia Daycare manager. "I need her evaluated for hospice."

A couple hours after that morning call, a nurse arrives, does a thorough physical inspection of Barbara's bruises and respiration and vitals. He's on the phone to an MD who writes the Rx for hospice care. Our own doctors are out of the picture now.

Later that day, the durable medical equipment arrives: the bed, supplies like gloves, diapers, wipes, a table, a wheelchair, an Oxygen concentrator. Shortly after these, a pharmacy driver delivers medications that include Morphine. (Barbara rarely speaks but her face furrows in pain. All hospice "care kits" contain it.)

Every three days a nurse visits, goes through the examination routine, photographs Barbara's fading bruises, communicates with one of two MD. The nurse quizzes me, gives me advice, leaves.

There's no time-off for me. If there's a service called "respite care" with 24 hour people, I don't qualify. I have a caregiver/housekeeper for a few hours twice a week and that will be my only respite time.

The constant stress and absence of respite aside, Hospice is an easy process for me. It's a business for the hospice agency. They have staff, an SOP, a checklist, a phone number. 

When Barbara dies, I won't call first responders. The Hospice agency has the datos. There's a hole in a wall at Riverside National Cemetery for Barbara. She'll wait for me there.
---
So it comes to this for me and Barbara. In a few days, Memory will be all that remains. It's best to remember the fun, and smile.

MAMA LOVE: She's almost there. She's there.

Editor: Alzheimer’s Dementia is a terminal disease that takes its toll on the Personhood of someone living with the increasingly dismaying progressions of the disease. A family member, either a spouse or an adult child, becomes despairing caregiver to the disappearing personality. At the End, dementia overcomes the organism so it abandons its shell. 

Caregivers have final obligations over time: deciding when to begin in-home hospice and palliative care, then watching the body leave the caregiver’s home for the last time. 

Time. That’s all we have after that neurologist fills out that form “dementia of the Alzheimer’s type.” Time is what we have. 

Today’s Guest Columnist, Nicki De Necochea, updates her February 16, 2021 column (link). That was a time three months and 27 days past. Every minute of every day, caregivers live with the disease. Before today, De Necochea was able to end her column recalling a sparkling moment lucidity:
My favorite thing she still does when hugging me is when she says, “you’re beautiful mija”.  My mother not only is communicating, expressing her love, but she knows at moment who I am to her.  Gratitude; I take nothing for granted.  

MAMA LOVE: She's almost there. 

Nicki De Necochea 

My viejita has for a time maintained her status, as stable as we could possibly expect, for where she is in in her Alzheimer's disease and trajectory. This has included hospice care for the last two months. 

Weaker and thinner, but still sitting up, standing for long enough to sit her in her transport chair, responding to simple questions and hugs and I-love-Yous as recent as this Thursday, and amazingly, remaining part of her daily "being," until this last Friday. 

Something changed and it was dramatic. A seizure of sorts, glazed eyes and she is in another realm, and no longer responsive. No muscle tone, and her body now just weight. Taking nourishment and hydrating has been consistently less, and has now, as of two days ago been replaced with inability to do these as well. 

Her transition is noisy, part of the Alzheimer’s which includes involuntary groaning and moans, distressing because that's what we as humans do when we're in pain. I've used an eyedropper to give her her anti anxiety med/and pain med, just so I feel better in case she does have pain or discomfort, and she's not "drinking" so the drops make it more able for her to swallow. 

I'll let the nurses take over tomorrow should she need something stronger. Some of the stuff we do is so we feel better as caregivers, right? 

I lie next to her and speak to her just to tell her I love her, that I’m here, that she’s not alone. I’ve read our hearing is the last sense to go, so I reassure her as best I can that I am right here, we are together and she can rest. That I'm not going anywhere. She quiets when I do that. Music is on, Pandora sweet stuff. 

Yesterday was the marked big change, and a sign that she's working hard to make that transition. This is the hardest part, for her; but also, for us. It’s hard to feel powerless. 

I’m list making, cleaning, fidgeting and doing all the keep-me-busy things, I can think of. Lists…like I'll Up the nursing visits to daily starting tomorrow. Place the order for the hospital bed not needed until now. 

Figure out what to dress her in when she passes; ask for hospice to have someone come to help me bathe and dress her when she does pass; be sure I know who to call if she does; because my brother is out of town as of Wednesday and I'll be on my own if that happens sooner…shit like that. All the just in case/just in time stuff. 

And my expectation is that these hospice “angels” will help us with the acceptance part, with less anxiety, and a better idea of what my gut says is the reality, and imminent. 

Why am I sharing this? Well, because it helps me process, and face the truth; and maybe one day will help one of you know what to expect in a similar circumstance. And because I think discussing such a huge family milestone should not be a quiet thing. Just as important as the births, birthdays, Mothers Days, anniversaries; family celebrations and the lot....maybe more so. It should be spoken, felt, shared and laid down. 

I am so grateful for these past 7 years with her under the same roof; both of us helping each other adjust to the coming of this very time, this exit, this reality that she has given us her all, and we too have given her all we have been able to, and willingly gave to make these years just the absolute best. Thank you to each of you who have given me so much strength, support, encouragement and shown your humanity in your caring. 

She was a force! 

We are also fortunate to have that force of family and community caring and the openly shared concern and affection. Thank you from my heart. 06.12.21

6.14.21 There

My mamacita passed this morning with me at her side, peacefully in her sleep. 

We stayed up together until about 2 a.m., me doing all the talking, and listening to music. She was gone by 5 a.m. So a very heavy day, with a lead weight for heart. 

Just now, my first chance to get to take a deep breath, the house too quiet, the bed empty and not a thing that needs doing. What now. She's gone....and her body too. Too much reality is so painful. I'm calling up the chingona in me to get me to keep me moving into the next steps. 

The hardest, hardest part of this journey was not the work, or the selflessness, or the sadness of watching the disapearance of who she was. The hardest part was watching strangers roll her body. All zipped up and removing her physically from me. Cabrones! 

Then, a gutteral wail from the depths; oh, and then I threw up. So indelicate.

Interestingly, when she passed, I opened every window, the bedroom door to the outside patio, and I saged her and my house. The open door and windows symbolic of allowing her soul to take flight. 

I couldn't believe how calm I was. I went out to the patio, to call my niece and as we were talking, a hummingbird came within 2 feet of my face, and just hovered for what seemed a message. Symbolic and reassuring. 

Guest Columnist: Running Out Of Time, Caregiver, Mi'Ja

Editor's Note: La Bloga welcomes guest columnists. Today's guest writer, San Diego artist Nicki De Necochea, continues La Bloga's explorations (link) of Memory, loss, and health. De Necochea writes out of personal experience. Families similarly stricken recognize the universality of such experiences. La Bloga welcomes questions, observations, personal stories. Use the "Post A Comment" link below.

We’re running out of time together.  

Nicki De Necochea 

We’re running out of time together.  

92 birthdays in and she has no idea that we’re running out of time.  My mother, perhaps the fortunate one, has no idea of loss, nor of her full scope of living, which her brain once processed for her, as naturally as breathing.  Her brain can no longer be relied upon.   

This exacting mechanism that allowed her instantaneous recall as easily as if pulling a book out of a bookcase has a corrupted hard drive, like a cranial computer in a state of crashing.  There are so many little things (and bigger more important things) she no longer grasps, sorts through, makes sense of.   The heartbreaking loss of everyday brain functions that we all take for granted, is not fathomable nor worrisome to her.   No cognition means no ability to grasp loss. 

This brain thief, Alzheimer’s, persistently invading her ability to be whole, wreaks losses that rob the whole family.  Each year, my mother and I face with lament how this disease leaves her with fewer physical and mental skills. Skills like talking on the telephone, picking a good apple in the produce section, handwriting as basic as signing her name, reading or even watching a television program with full awareness, now vanished. She doesn’t lament their loss. She no longer recalls these as part of everyday living skills.  

My mother’s brain power once gave her ability to remember countless phone numbers.  As recent as six years ago, she could walk up to an ATM and punch in her pin number. She could remember her social security number.   The family are the ones left to catalogue what she can no longer remember or do.   She has an unwelcome freedom from looking for things she has misplaced, of fretting over what she cannot recall. 

We’re running out of time together, and losing her completely is so very near.  The signs are physical too.  Her lovely strong, and some years ago robust frame is thinning. Absent muscle mass has gone for good.  

Most dear is her current solid awareness of love, and her ability to feel gratitude and connection.  The “I love you mija.”  “Thank you mija." "You’re a good girl, mija.” She still expresses her ability to love. Her brain still gives her permission to feel, to say. These will one day be buried, or too tangled with no outlet in those disintegrating brain synapses.   

My coping skills as her daughter (labeled caregiver by a society that has trouble grasping the strength of our cultura and the genetic obligation of our love), take form as resolute patience, loving appreciation for who she is, and foremost, Gratitude, from Spanish, apreciar. I am my mother’s daughter, and I am grateful for all this means. 

Being loving is still her forte.  She reaches out to me, to be a mother by finding my arm and caresses it as if trying to warm and comfort, or perhaps healing like a naturalist healer, a sobadora. Gratitude abounds when I focus on the things she still has, and still is.  The hugs, and affectionate kisses when I grab on for a gentle rock, a hug, or a dance in place. Her love of ice cream, and candy, and ability to delight in them, with a gracious thank you to boot--always offering me a bite of what she is eating, generous to a fault.   Grateful for her enjoyment of music, showing her delight by tapping her hand on her leg in time with the beats.  

My mother doesn’t remember my name, but knows who I am. I am her mi’ja.

I remind myself, we are running out of time together, and acknowledge that now is now.   I find the patience to just let her do, as long as she wants, because doing something is what’s left to her of her “mother” skills, not yet gone.

I lament all the subtle changes in her in the last six years; all forfeitures, the gains are almost nonexistent.  Capacities fall away, dependencies inch in and take over more of my time leaving her with even less.   The odd behaviors that seemed frustrating when they started are now missed when she can no longer do them.   The annoyances, like her need to pack and empty her dresser drawers almost daily became something I finally acknowledged as an activity that kept her focused on a task, and I let go of thinking of it as a negative I’d just let her do it, because she could.   She no longer does that, and I miss her mischief.   

Still verbal, somedays she makes some incredible, wise astounding statements.   She has given me surprising advice, and insights as if some extraordinary force possessed her for a few minutes to give her moments of lucid wisdom.   Other times less so, like she’s channeling and speaking for someone else and the messages are in code 

So, as my viejita turns 92 the Annie Lennox song is in my head rings true more often, these days, “No More I Love Yous.”  It’s the soundtrack of my dread and fear of the day when there are none of those left for her to share, because we’ve run out of time.   

There’s still a place for lots of joy, laughter and gratitude in our lives. She is so very sweet, and affectionate.   She says I love you and thank you often, such simple human courtesy that many don’t say often enough. I can still make her laugh, and help her feel joy with music or affection and silly talk.   

My favorite thing she still does when hugging me is when she says, “you’re beautiful mija”.  My mother not only is communicating, expressing her love, but she knows at moment who I am to her.  Gratitude; I take nothing for granted.  

B. Nicki De Necochea is a So Cal artist, residing in San Diego who embraces her art and writing as a form of creative self-expression.   She is a painter in oils, acrylic and mixed media.   Her writing addresses personal themes and experiences as another vehicle for using art for growth, human awareness, and for her own self-discovery.