Tuesday, June 25, 2019

His Wife Enters Memory Care

Michael Sedano

"Yesterday,Today. Today, Tomorrow."

“It’s been fun,” she said and I smiled at the sardonic humor. That was the old Barbara talking, wise-cracking in the sobering face of tragedy. What she meant was, on Thursday, Barbara moves into  Memory Care and for the second time in our lives together we're going to be torn asunder.

The first time we were forcibly separated I had to go live at Ft. Ord. Barbara refused to allow it, and when advanced training started, Barbara packed up kit and caboodle and moved into a farmworker shack outside the gates of Ft. Ord. I went AWOL every night of my advanced training because Barbara refused to allow us to stay separated.

I began La Bloga's 2019 with a Tuesday column on Memory (link), fearing that today's column was steamrolling toward me like an out-of-control 16-wheeler on a greased downhill run and that guy was sitting up there watching it coming on our first New Year's Day together. 

In the fifty years since I returned from Korea to home with Barbara, our separations lasted at most two weeks at a stretch. I was travelling for work at lot, but when I returned home, life resumed its responsibilities of building more memories and we did that well. We accumulated stuff. Barbara threw parties at the drop of a hat! People had their weddings at our pad. We filled the yard and house with gente food fun memories, que no? We never were alone and we are not alone now, that's for sure my friends.

This is intimate stuff, I know. People fear Alzheimer’s with good reason. An ironic fear because once you’re living with Alzheimer’s you are dispossessed of Reason. And short term memory, and things like my name and identity. She’ll respond to something I say with “Michael says that all the time,” and look at me as if I’m some well-meaning nameless person. It hurts, but it is what it is. I’m not me to her. The person speaking is no longer my Barbara. It makes love grow stronger, pain.

Barbara has memory, she knows stuff. She remembers her friends from when she was Chair of the Department; they visit and call. They hold warm memories of Barbara’s friendship and love over her teaching career. But near-term memories jumble and immediate experience evaporates. She doesn’t remember but senses a foreboding. She asks repeatedly what day today is. Then she asks, when am I moving? Why are you getting rid of me? I don’t know why I can’t stay here? I am going to beat this, she pledges.

Barbara Sedano watches her first graduating seniors, San Gabriel High School, 1971

Her bargaining gives me hopefulness, but not hope. There’s a personality operating in the shadows. She was powerful, that woman whose reflections rise up to argue against inevitability. That’s Barbara in there, the fighter not giving in, looking for a way out. She knows it must be this way. 

When she says, on her bad days, “I want to go home,” I know she means her brain is screaming for life as it used to be, herself as she used to be. We live here. "Not here, Home." She wants to go home a lot. There are good days.

The hippocampus is the first to go, a clinician told me once. What a cruel disease, dementia. Our entire family has been crushed by the existence of Alzheimer’s among us. I saw our condition as my new career, I dedicated myself to caring for Barbara’s needs with the single-minded intensity I used to assume, when I took on work projects. I revived the “Type A Personality” me. And it broke me. I failed in lots of ways and the disease itself won’t back down.

That’s why I explain to Barbara, I’m not sending you away. I can no longer take care of you the way you deserve, the way you need, the way the family deserves. And she says it’s her fault.

This evil disease will extinguish those vestiges of my Barbara as more and more she is present and in the moment, and only that. Much of her passing hours she sits motionlessly, body at rest. I sit in the room, watch, wondering what battles rage in the synaptic universe that populates her beautiful mind? Our lifetime together resides in there for her and it can’t get out here into the light. Dementia chips away at chips away at chips away at her Self. Each blow rings with finality, taking a little more until the spark in her eye will refuse to shine for me.

One of those "happiest ever" days, daughter's wedding.
So we’ve dedicated this week to doing stuff for the last time. We don't talk about it, and maybe it's just me being emotional. But it's purposive.

This is similar to the first time we were separated. The day before I reported to the Army, Barbara and I took a rowboat off the Santa Barbara coast so I could view the Continent I was leaving. I planned on coming back.

Today will be the last time we cruised by King Taco; last time we sat at Jones Coffee for her hot chocolate and a treat. We'll go grocery shopping one last time; I’ll buy food as if there’s a tomorrow. 

Wednesday we're having lunch with the first couple we dined with after I returned from the Army. We didn't plan our last social lunch this way, but it comes around like it that.

I’ll cook Wednesday night’s dinner as if she’ll have leftovers for Thursday’s lunch. Maybe Thursday she’ll eat those leftovers for our final lunch at home. I love cooking for my wife. I'll take her stuff in Memory Care.

Thursday night, Barbara has dinner in Memory Care. I’ll kiss her goodbye instead of goodnight. I'll leave her there, come home, and sleep alone. I'll go visit Friday morning.

Barbara at 5, 70 years ago. P'alla va la sombra.
51 years ago this August, I promised to love, honor, cherish, in sickness in health, all the days of our lives and I’ve done my darnedest to live up to that promise I made in front of my familia.

I can’t do it myself anymore. I’m beaten. This Memory Care operated by a large medical corporation is how I am keeping that promise from now on. We almost made it to 51, together.

I tell myself I didn’t fail, I coulda done better, for sure I shoulda done it differently. I apologized to Barbara that I could not help her when she needed me the most. But I didn’t fail. Alzheimer's cannot be beaten. Yet. I volunteered for a study of healthy brains (link). My brain will inform researchers in studies designed to predict Alzheimer's. Maybe someone will figure out how to fix broken brains from what someone sees in my brain under a microscope. A ver.

So off Barbara goes on Thursday. One more separation in our life of belonging together. She’s in walking distance and I’ll visit a lot. I hope Barbara’s around when I get there. Our life together, it’s been fun, Barbara. Thank you.

A couple years ago as the disease onset struck us with finality, I asked Barbara what she wanted people to remember of her. She answered instantly she was Charlotte's grandmother and Amelia's mother, and after that, she was an English teacher.

Dear Mrs. Sedano,
I have thought about you often through the years & even shared stories about you with my own students & family. My name is Natalie Chavez (Contreras now) and I was one of your Journalism students back in 1985 at Alhambra High. You are the whole reason I came out of my shell and started having confidence. You helped get me involved in high school & changed my whole direction. Now every time I come across a shy kid like me, I think of you! Thank you! My love has always been writing, but I chose to make a difference, like you did, and I teach. (smile) I really do hope you get this (or your family) because I want you to know, I’ll never forget you! God bless you. Love, Natalie & Family.

That’s my Barbara, gente. Don’t forget her.


Unknown said...

A touching tribute filled with love and anguish...we will never forget her!

Latino Heritage said...

Thank you for being so honest. Seems fitting - your shared love is deep and honest. I will remember Barbara. This post reminds me why that is something that should be.

Unknown said...

Beautiful Brother...you will always have your Barbara....Abrazos.

Rosa Magallanes said...

Thank you for sharing this Michael. God bless your love.

sandra said...

Your love for Barbara is strong.Thank you for sharing with us.

tisha said...

Abrazos, Em. Gracias to you and Barbara for opening your home and hearts to so many writers and otra gente over the decades.

Elena said...

EM, so heartfelt. I know what it’s like to go through this. The feeling of losing your spouse every day. A little each day as they become more forgetful and they are aware of what’s happening to them. As a wife of 54 years, it meant no longer being able to share so many things we’d enjoyed before, to hurt deeply knowing it would only get worse, Kurt had Parkinson’s which later developed into dementia. He got pneumonia and it became septic. It was difficult to let go but I know he thought it was best for him, he didn’t want to get worse, to forget who he was or for us to know him as he’d become. In my entire life I had always lived with others around. The most difficult part for me is living alone and grieving his loss. I wish you comfort in knowing you have many friends who have you in their prayers or are supportive in other ways.

Jessica Ceballos y Campbell said...

Oh Em and Barbara, you are both in my hearts. This kind of love may not always be memorable, as this dreaded disease reminds us, but it’s definitely tangible and reflected in the beauty of what remains in the world around us. It’s not a coincidence that you take such captivating photos of the flowers around you. đź’ś

Dianna T. Gonzalez said...

Beautiful Barbara...always. Always a smile and looking gorgeous. With you by her side mijo. Beautiful tribute. Beautiful Barbara. Abrazos, Dianna

Andrea Mauk said...

Michael, for all the years I've known you, I have never met Barbara. I regret that. Alzheimers touched my extended family in Arizona and caused much pain. There was a tiny but fierce nana who took care of a husband through black lung, and through the time that he no longer remembered her, and eventually lost the skill to even speak to her. The toll it took on the family was immense. Her belief that their love remained outweighed any burden we felt. She was the keeper of the memories, as you now are as well. It is a blessing that as keeper, you are also a writer. Your tribute to Barbara is so brave, loving and beautiful. Thank you for sharing your heart with us.

Felicia said...

Em, I hold your love of Barbara in my heart. I have seen no greater love. The devotion with the strength of a spring cascading waterfall. She's a delight. I met Barbara as she is now, I can imagine the effervescent Barbara you poetically, lovingly, and longingly shared with us all. I love you both. You are both translucent divine souls. A divine gift to the world. We are blessed to have you and Barbara, whose love runs through your veins grace us. In this time of transition, your great love gives you strength even in pain. I admire you so dear Em. ♥️

jmu said...

What do you mean you will buy food as if there is a tomorrow?

There will be a tomorrow!

How else will you be visiting on Friday?

Yes, you gave it your best shot but you knew you would not win and yet you kept trying.

Because that is what you are supposed to do: try and try again while not giving in to despair porque no hay mas remedio que seguir jalando.

Besides, you honor her by keeping her memory alive. So you gotta stay alive...

Unknown said...

Always admired and never forgotten for her commitment to her students. She is simply the best! (AHS, Class of 1995)

Odilia Galván Rodríguez said...

Querido Em, there are really no words to describe how I felt reading this. I cried. This dis-ease got 2 of my 4 tĂ­as - and mom. One died of a heart problem too early in life to know if she would have gotten it, and the youngest tĂ­a is still younger. I pray everyday that she will not fall prey to it. I met Barbara in LA during the conference you invited me to, she is lovely. I will remember her fondly as will all those who know her. We must keep hope alive and cherish our loved ones in our own heart's memory. Abrazos, Odilia

Norma Elia CantĂş said...

Em...thank you for writing such a post. My mom and Elvia's mom both went down that path. I never met Barbara but I feel I know her from your description and the comments. I will remember her! As you travel the next stretch of the journey, know that you are loved. Love persists beyond the disease. abrazos, norma

David said...

So sorry, Em. I Can imagine the pain--unbearable.
My thoughts are with you.

Of Mere Being

The palm at the end of the mind,
Beyond the last thought, rises
In the bronze decor.

A gold-feathered bird
Sings in the palm, without human meaning,
Without human feeling, a foreign song.

You know then that is not the reason
That makes us happy or unhappy.
The bird Sings. Its feathers shine.

The palm stands on the edge of space.
The wind moves slowly in the branches.
The bird's fire-fangled feathers dangle down.

--Wallace Stevens