Tuesday, May 09, 2023

Life After Alzheimer's

Memory: The End. Begin Again.

Michael Sedano

I live in a new place. Beyond Pasadena, against the San Gabriel Mountains, Altadena. This is the final column I shall write on the theme of Memory. I leave behind all the memories and shall not look back at that address.

Barbara died from living with Alzheimer's Dementia. She was gone and the huge house she bought 38 years ago offered me only memories to fill the empty space, lots of them. Good memories. Some hurt. Memories of Love, loving, living, being. Then, as the books predicted, everything ended.

Barbara, my wife of 55 years this coming August 31, didn't know she was afflicted. Early on, I would explain to her what was missing in a conversation, or in her life when she expressed distress at what her world was. She did that at the beginning, notice.

"Barbara, love, your brain is dying. You won't remember stuff as soon as it happens. You'll forget my name."

She refused to believe the stories I concocted. And just like the literature said, she "progressed" from living in the moment to ambulatory difficulties. I held her hand wherever we went, then, I guided her walker when the wheels stuck on the bathroom door sill or outside on a sidewalk. Then, I pushed her wheelchair to the bath or the gardens.

I would take my wife to The Huntington Library where we enjoyed the shade at one particular garden alcove. I would move her chair into the shade, excuse myself to bring her a croissant and a hot chocolate. My gosh, she loved that snack. When she'd forgotten how to eat, I showed her to tear off a chunk of bread to eat. 

Barbara's mind emptied of words. When the cat jumped up on her blankets, a delighted Barbara asked me to look at "the doggie." She was delighted to share the covers with "the doggie." 

When she no longer had words that said "croissant" or "hot chocolate," Barbara did not see those objects on the table. Two more visits when I dumped her uneaten snack in the trash, we stopped buying snacks. How I missed watching her relishing that snack, I could not forget knowing which was the last croissant Barbara ever ate. 

There are lots and lots of "the last time," some I wouldn't notice until long past "the last time" happened. The last time she ate a meal at the table. I don't remember last time she walked without falling. I remember she fell three times and I used all manner of strength and leverage to lift her to her bed or the chair she'd fallen from. 

The literature told me I have 5 to 7 years upon diagnosis. My wonderful spirited woman best friend in the universe was going to die in five or more years. How many would we have? She's going to die. How long? Not long.

Nothing can be done for Alzheimer's patients. We had antipsychotic drugs. A pill named Memantine that was supposed to slow the progress. In the fourth year I began to wonder why anyone would want to slow the process, would want to prolong what she and I were being put through by that cursed disease that no one understands?

Medical researchers involved people with experimental drugs that might... might what? Cure Alzheimers? No cure, but science seeks pills or infusions that prolong the decay. Barbara wanted life. I'm sure prolonging the life she had would have meant something to her ultimately non-functioning mind. In the last six months--I didn't realize I would have such a short life remaining to me, with her--she began losing speech until Aphasia became her mode of expression.

Before I lost her voice, Barbara would walk past her Diploma and read it then happily announce to me, "Look at what they gave me, Master of Arts in Literature!" She was delighted someone was so nice to her. The M.A. had a special spot. Elsewhere, I'd displayed her "World's Kindest Adviser" award from her student club. Every kid wrote loving messages to their retiring mentor. They all mentioned the pool parties at Mrs. Sedano's house. In truth, I did not remember all those parties.

A lifetime ago, I recorded a conversation as we drove to her neurologist. Barbara's conversational voice still had curiosity in it. Where are we going? Who is that?

Then the recording catches her early aphasia. It was not a tongue-tied moment. She strings together words then a noise without phonemes in the middle of the sentence. I noticed and got scared. The literature says that's one of the final symptoms.

Less than a year following that recording, Barbara moved from our bed to a hospice bed in our bedroom. That would be her space in the wonderful home she made for her familia, the three of us. There was a day early in the diagnosis I told Barbara I wanted to sell the house and move to Assisted Living. No way. Barbara said she would not leave this house to go live somewhere else. My caregiver career would continue until.

The fifth year, Barbara's dementia "progressed" fast enough I noticed the world fall apart. She could no longer read. A year before, she'd written a thank-you note to a friend; I spelled the words, her hands could not print the letters. I'm sure that friend treasures that scribbled card that had "pain" written all over it. My pain; Barbara didn't know.

One morning in that house, in the bedroom where she lay in her hospice bed, I placed my forehead on Barbara's forehead, kissed her, said "goodbye, My Love," and went to the fireplace for a break. I knew she was going away today, and I'd said "good-bye" three times already. 

I sat in misery on the floor at the hearth and heard her shout, a cry of "AHH." I wasn't with her, I was warming my ass and fighting misery and hopelessness, and I missed the final breath. She must have sensed my absence and she called to me. "Ahh" is aphasia's way of saying "good-bye." Or, "I don't want to leave!" Or, when the last synapse exploded into the last idea, it really hurt. She didn't call my name, she no longer knew me. 

Maybe "ahh" is aphasia for "Michael"?

Barbara May Cauchon Sedano died on February 4, 2023.

On May 7, 2023, my daughter swept the floors and removed her mother's and my final possessions from her mother's house. It was ended.

And now I begin again. Sabes que? I'm gonna make enough new memories to last me the rest of my life.

Q E P D my love. Thank you. 

Adelante voy.


Jean Hooper said...

Reading this reminds me how immeasurably sad I feel for the loss of Barbara. Life still beckons us the living. At the same time the spirit world shelters us like an ever-expanding never-breaking umbrella.

JimWLA said...

Reading your articles has made me realize how important it is to Love someone. I know I have to get closer to those I love as my time is running out. I have learned so much from you.

Jim Herrera
Vietnam veteran

Anonymous said...

Your words found their way into my heart, soul, and life. I walk in the light that you bring because you can’t help it. You are cherished for the joy and solace that comes with your territory. You are a gift to so many.

Anonymous said...

All the memories I kept within me burst out reading this essay. I took care of ex's mother-in-law with the same dreadful disease for 7 years. Oh, have I mentioned about bedridden father-in-law simultaneously? I understand you well. Saddest day was not when she died, but when she asked me, "Mother, may I have another piece of cake?"

Anonymous said...


Anonymous said...

Mil gracias! Your sharing of the joy & suffering that comes with love & loss was remarkable & incredibly moving. Peace & comfort to you

Anonymous said...

Thank you for this, Michael.

Anonymous said...

Thank you for sharing your experience and your love for our Barbara. It brought me to tears. The day I first came over to pick you up, I remember her beaming smile. She didn't exactly remember me, but something was there behind her smile. I will treasure that, and I will be happy for your new life.

Anonymous said...

xo from antoinette nora claypoole xo