Barbara, Michael, Their One Final Moment
Michael Sedano
“Dementia of the Alzheimer’s kind.” The neurologist’s cursive on the hospital form screams out at me. It’s only a few weeks past my Barbara’s 74th birthday.
I have meagre understanding of “alzheimer’s”, what I’ve read in newspapers and magazines. The diagnosis sends me into a frenzy of reading. The library has an extensive collection of books, journals, and magazines. None can offer succor, many offer lousy advice, a few feed what I will discover are misconceptions.
“The long goodbye” is a descriptive term I embrace. “Disappear” I reject but as time goes on, more and more of what made Barbara, Barbara, disappears. Barbara changes, a lot, but her person is always there, always my Barbara, always that joyful spirit I invited to the debate banquet in 1968, our first date.
We sat to say goodbye. How do you want to be remembered, Barbara, when you’ve forgotten everyone and can no longer remember? “I was Amelia’s mother. I was Charlotte’s grandmother. And I was a teacher!”
Unwelcome changes hit me hard. Since 2017 she’d abandoned decorating her house for her various holidays. She abandoned her parties, always her most joyous weeks of designing invitations, reviewing the guest list, planning the menu. Just like that, she stopped. I didn’t understand her unwillingness to open her computer files. Fatigue, I chalk up her reluctance; those grand soirées are a lot of work and for sure, both of us have been slowing down.
Now, with the rapid advance of the disease in 2018, I look back at 2017 understanding we already had begun our journey and I missed the signals. One characteristic of partners living with Alzheimer’s is regret and torturous thoughts of “Why didn’t I help her more? Why didn’t I see what was happening?”
The books and articles all have the same answer: there’s no treatment, no cure, nothing you could have done to change the outcome. All we have is Time.
In the early days of our disease, we sit in our living room and I play her favorite songs on the piano. I notice her lose interest as she rises and walks into the bedroom to lie down and sleep. Other days, the stereo plays oldies, music we both knew before we knew one another. We laugh at predicaments posed by Chuck Berry, I seek Barbara’s opinion on Maybelline’s behavior. Again, she will simply rise and walk away to rest.
After a few weeks we no longer sit and enjoy our music. I still play the stereo, I continue my piano practice, but Barbara no longer comes into the room to share the hours. She prefers her bed, or the easy chair I’ve set up in the bedroom.
Barbara knows a fellow named Michael. She asks after him. “I’m Michael,” I smile. “Not you, the other one. He was here this morning.” I’m happy she has memory. I ask, “Is he a good guy?” “Yes,” Barbara tells me. I am pleased to be a good memory.
The books and magazines and the neurologist confirm what I know for sure—Barbara no longer has memory. She also doesn’t have facial expression beyond a blank stare. She also doesn’t have emotions, nor hunger, nor curiosity, none of the behaviors that make her my Barbara. I don’t cry nor wail as if I’m doomed. I promised 50 years ago that no matter what, I’ll be by her side.
Then comes our final meeting in the second year.
It’s morning and our a.m. routine is well established. She’s awake and asleep periodically throughout the night and I’m in her sleep cycle, too. She sleeps deeply from around 3 or 4 until there’s light outside. When I sense she’s about to rise, I rouse myself, go the kitchen to prepare her breakfast. Back in the bedroom, I get her clothes ready for the day, make sure I have a new incontinence garment, and wait for her to rise.
This morning she rises and I find myself in a state of Grace. Barbara’s face is animated, she is fully in the moment, her eyes are alive with recognition. She smiles. I burst with joy and hope. My arm around her holding gently but firmly. “Barbara, welcome back. Where have you been?”
She comprehends. She tells me “I’ve been far, far away.” And as she tells me this, her face changes, loses the joy and I am desperate. I beg her, “Please stay, Barbara, don’t go away.” It’s a vain hope. Barbara has gone and this time, her absence is absolute. Never again does her face come alive, her eyes always stare blankly into space. I go into another room and cry like I’ve not done before.
I treasure that encounter, my final meeting with my wife. I curse myself for not writing down the date and time. I carry the memory as an artifact of Alzheimer’s worst and best day. Every day for a few weeks I look for that momentary return from so far, far away. I won’t cry again until she’s gone.
Alzheimer’s dementia strikes increasing numbers of souls every year. I hope as people find themselves in this hopelessness they will take notes, keep a journal, take photographs. All we have is Time, precious hours, days, weeks. When a behavior disappears there’s a delay between its final appearance and when the caregiver realizes what’s gone, and despite all hope, it’s gone forever.
When did we laugh that last time about Maybelline who can’t help herself? She’ll never be true. Who wrote the book of love? G l o r i a, what are the words to Louie Louie?
Many days I pull out a worn and tattered photograph.
I’ve been home from the Army only a week when Barbara has to go back to work. First day, year two, teaching high school English.
This morning, she wears a light sweater over a colorful sundress, slings her purse strap over a shoulder cradling a canvas bookbag like she’ll cradle her daughter four years from now. But right now, she’s leaving me to my own devices, no particular place to go in this brave new world where I am lost and will find a way to fit in.
Barbara stops at the door, turns, smiles at me. I take her picture. Barbara turns and heads out into the light and into her own world, excited at the prospect of her life ahead.
She smiles out at me from that photograph. This young woman still lives, out there, in the image and behind the photo, a moment suspended in time. She’s out there, just on the other side of this picture.
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