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!