Susan J. Farese Reflects on Alzheimer’s and Nursing in Poetry

Susan J. Farese, author of Poetic Expressions in Nursing: Sharing the Caring

By Susan J. Farese, MSN, RN

I grew up in Northern N.J. during the late 1950’s in a quaint, predominantly blue-collar Polish town. I attended parochial elementary school until eighth grade, when we moved “down the shore” to Central NJ.  My immediate family consisted of Mom, Dad, my younger brother and me. My maternal grandparents Ann and Joe, lived around the corner from us, that is, until my Grandpa Joe died in 1964 at age 55.

Then things really changed….

When I was between age 8 to 14 years old, we experienced a traumatic sequence of events in the family. This was ultimately the catalyst for me to become a nurse (graduating with my BSN in 1978), as well as becoming an author/poet in 1991.

Enter Early Onset Alzheimer’s Disease

Grandma Ann was truly my soulmate during my early childhood. Then, my family and I witnessed the profound grief of gradually losing her. She was so significant to me, with so much spirit and zest, and we “lost” her, before our eyes, before her time.

You see, after gradual, then drastic changes in her demeanor, behavior, moods, memory, and appearance, and after seeing multiple doctors, my maternal Grandmother Ann was ultimately diagnosed with early-onset Alzheimer’s during the 1960’s. Due to safety for her and our family, she was institutionalized from approximately 1965 – 1971. lt was very confusing and frightening to see her ultimately regress to a vegetative, mute state.

There were no adult day care centers back then, and overall poor support for families of patients suffering from dementia. It was a traumatic time for all.

I visited her at the institution with my mom several times. We would take her out for a day pass. The public would stare at her. Her clothes were rumpled, her hair so very tangled. The institutional care was sub-par.

Time passed.  Ann contracted tuberculosis, and, because my mom had two children, she wasn’t allowed to visit Grandma Ann for quite awhile.

The day before Grandma Ann died, April 13, 1971, my parents and I went to visit her. She no longer “knew” or remembered my parents but absolutely “connected” with me on a level that was profound, reaching out to me at her bedside, mumbling and staring straight through me. I was 14, turning 15 later that month. That has haunted me to this day.

Ann, age 60, died of tuberculosis the next day,  April 14, 1971.

We avoided discussing Ann because it was too painful for Mom.

I know I was called to the nursing profession because of this early loss experience. After graduating college in 1978 with a Bachelor’s Degree in Nursing, I worked as a military nurse between 1978-90 in clinical areas (general medicine, medical-surgical, intensive care, emergency room, recovery room, cardiothoracic surgery step-down, orthopedic surgery), as well as in education/training, administration roles. Then after leaving the military, worked as a nurse entrepreneur/consultant and nurse researcher. After several geographic changes and professional reinvention, I’ve been a communications professional and PR consultant for many years.

How I became a poet (accidentally) in 1991

My serendipitous journey with poetry has been cathartic, eye-opening, and enriching, and actually happened by accident. I had repressed many of the deeply rooted feelings about Ann’s passing for nearly twenty years. When I saw the movie Awakenings in March 1991, a female character, “Lucy” (who caught the red ball from her wheelchair) vividly resembled Grandma Ann in the late stages of her battle with early Alzheimer’s. Later that week, my husband went on a business trip. One night, I couldn’t fall asleep. I tried a bath, a glass of wine, etc. and was restless. I grabbed a journal my husband had given me the holiday before, and a poem poured out of me, in sequence, from childhood to 1991, which was 20 years after Ann’s death. My first poem, “Ann’s Zest Ends,”  evolved from the heart.

When I called my mother and read the poem to her, she also cried, and asked me to share “Ann’s Zest Ends” with as many people as possible, because it so closely reflected what our family experienced with Ann’s gradual loss. That was all I needed!

I began my crusade, and embraced the opportunity to share the poem! I read it aloud to several Alzheimer’s support groups, nursing organizations and other community and professional groups. Ann’s spirit and zest returned each time. Tears and tissue boxes appeared out of nowhere. People would come up to me and want to talk about their relatives with dementia. What was this phenomenon? I knew then that this message connected with so many people and related to them in their own way. The response was overwhelmingly positive.

This tremendous response gave me the confidence to continue writing poetry, which led to my book Poetic Expressions in Nursing: Sharing the Caring, published initially in 1993.

The second edition of  Poetic Expressions in Nursing: Sharing the Caring (published in 2021 due to the stress, PTSD, burnout, depression, anxiety nurses have experienced during the pandemic), contains the first poem I wrote, “Ann’s Zest Ends about Grandma Ann’s early onset Alzheimer’s.  Also, there are two other noteworthy poems addressing dementia, “My Friend” and “Caregiver”. “My Friend” is about connecting with an elderly person, and “Caregiver” is an ode to dementia caregivers.

In addition, I have provided many seminars and continuing education classes for nurses and the general public regarding poetry.

Grandma Ann passed away 50 years ago! I still feel the loss in my heart…

Purchase Poetic Expressions in Nursing: Sharing the Caring on Amazon

Listen to Susan read “Ann’s Zest Ends” for free in the audiobook sample.

About the Author

Susan J. Farese, Poetic Expressions in Nursing: Sharing the CaringSusan J. Farese, MSN, RN, (Veteran), a native of NJ, is owner/president of SJF Communications, San Diego, CA. She has diversified experience in health care and communications, including military and civilian nursing practice, management, education/training, public speaking, research, and consulting. She received her Bachelor of Science degree at Widener University (PA) and Master’s of Science degree from Seton Hall University (NJ). SJF Communications provides Public Relations, Marketing, Social Media, Websites, Writing, Filmmaking, Acting, Public Speaking, Mentoring and Photography. Clients include theatres, musicians, filmmakers, authors, professional organizations and businesses.

Susan is the author of the book Poetic Expressions in Nursing: Sharing the Caring (1993 and 2021), currently teaches ‘Capturing Your Creativity with Haiku’ workshops, and has published poetry and articles on a variety of topics.

In addition to being on the advisory board of San Diego Film Week, Susan is a member of SAG-AFTRA,  American Legion Post 43Veterans in Media & EntertainmentSan Diego Writers Ink  the San Diego Press Club, the Southern California Writers Association, the Army Nurse Corps Association.  Since 2017, she has been a Mentor in San Diego State University’s Aztec MentorProgram.

Her passions include birdwatching, nature photography, writing/poetry, as well as film/tv/theatre. She is in awe of hummingbirds, seahorses, heart-shaped items/art and the colors purple and teal. She lives in sunny San Diego with her husband Mike, daughter Emmy, and is also a human caregiver to her family’s geriatric tuxedo cat Chloe Marie and Betta Fish Alvin Danny Boy.

Connect with Susan

Website

Facebook Business Page

 Instagram @sjfcommo

 Twitter @sjfcommo

Contact: sjfcommunications@gmail.com

 

 

Share the Post:

2 Responses

    1. Thank you Pop for your kind words as well as Alz Authors for the opportunity to share my story about Grandma Ann and also about poetry as a healing art.

Subscribe to Our eNewsletter

SUBSCRIBE to our weekly eNewsletter! Be among the first to know about new authors, podcasts, events, and more for help on your dementia journey. As a welcome gift, you may download our FREE booklet “Caring for a Mother with Dementia,”  featuring 15 quality titles. Subscription is through bookfunnel.com. You may unsubscribe at any time.

Support Our Mission

Your support enables us to continue to provide quality resources for dementia caregivers. We appreciate any donation. Thank you for your support!