The Poetry of Caregiving

By: Caroline Johnson 

It was a chilly winter day. I turned to write a homework assignment on the whiteboard for my English students. As I wrote the date, January 26, I froze: It was the one-year anniversary of my mother’s death. I thought about her funeral and how the soil was too frozen at the time to cover the casket. I wondered if it had thawed now. I wondered where she was.

As the family caregiver for both of my parents, I witnessed firsthand the traumatic effects of memory loss. My father’s dementia was the byproduct of a rare neurological disorder; my mother had full-blown Alzheimer’s. As a way to grieve their loss, I wrote poems over a 15-year period. These poems were published this past May in a book dedicated to caregiving, entitled The Caregiver (Holy Cow! Press), which contains poems about Alzheimer’s, Parkinson’s, hospice, and many other concerns I encountered on this roller coaster journey of care. The poems became a sort of calling for me, and I am including some excerpts from them in this article.

A mother of five, my mother was a very creative, resourceful and extroverted person who made friends wherever she went. Even with her Alzheimer’s, she remained gracious, despite the cruel nature of the disease. She would “wander into each guest’s memory, making friends with strangers, whistling a tune each day” (“Borders”). Despite Rheumatoid Arthritis and a shunt surgery, she remained strong.

It was a gradual progression. She could never remember the lines in a play she was acting in. This morphed into more forgetting, then delusions, then wandering. Her home became foreign to her, and we had to put a lock on the door:

“I’m going home,’ you say confidently, in a cloud of delusion, as you step over yesterday’s daffodils, and walk away from the moon.”  (“Wandering”)

It was about that time when she began thinking there was another Caroline, one that was perhaps both evil yet also generous. I describe this in my humorous poem, “Donut Holes”:

“Do you know someone has given me a whole closet of clothes? Caroline, did you do that? … Or was that the other Caroline?”

Towards the end, my mother needed to be spoon fed. I describe this spiritual act in the poem, “A Mother’s Love”:

            “The nurse sits her up in bed.

              She winks one eye open and I feed her

              A spoonful of stuffing and gravy.

              With brown eyes she smiles, and the smile

              Lasts me the whole day—more than 77 years,

              More than one week in a hospital bed,

              More than a generation,

              More than the love a mother can show.”

My mother was a hospice volunteer in her younger days. Both my mother and father were on hospice at the end, and we welcomed the support, though it is always difficult when you witness someone dying: “Seeing Mother as Raggedy Ann / in hospice clothes / shakes me up, rattles my bones” (“Conjuring”). I was holding her hand when she passed. Like so many mothers, she wanted to make sure everybody else was satisfied before she could let go.

During the last year of my mother’s life, my husband and I participated in a Walk to End Alzheimer’s. We also organized our own private bike-a-thon, “Ride for Gladys.” She passed away shortly afterward.

I don’t remember when I wrote the poem, “Alzheimer’s Dream,” but I’m sure it was during the middle of her illness when she was struggling with delusions and trying to stay sane. In the poem, I write about how she has become a stranger to me; nonetheless, I, like so many daughters of mothers with memory loss, craved her company:

            “Let’s sit down here and talk.

              Let’s look at the weather.

              Let’s do everything to be together.

              Let’s try not to remember,

              Have a drink to forget

              That we ever once met a lifetime ago

              When I called you mother

              And needed you so.”

I still miss her, but she instilled in me a love of creativity, art, music and people. I will always treasure her special gifts, and these came through even when she faced the most devastating challenges.

Caroline Johnson has two poetry chapbooks, Where the Street Ends and My Mother’s Artwork, and more than 100 poems in print.  Nominated for the Pushcart Prize and Best of the Net, she won 1st place in the Chicago Tribune’s Printers Row 2012 Poetry Contest. She leads poetry workshops for veterans and others in the Chicago area. One of her favorite activities in the past was watching James Bond movies with her father. Visit her at


Life takes on a new meaning for the Davenport family when their matriarch Mama D. is diagnosed with Alzheimer’s in Unforgettable, the new stage play that Gdavis Productions and Films, LLC and the Alzheimer’s Association have joined together to createThe dynamic and emotional stage play will showcase the effects of caring for a loved one with Alzheimer’s and the importance of understanding early detection and participating in clinical trials.

The play will debut in Chicago, Illinois on Saturday, June 10 at 11 a.m. and 3 p.m. at the DuSable Black History Museum and Education Center. The performance is free to the public, and in addition to the play, the Alzheimer’s Association and their partners will have information and local resources available.

Gdavis Productions has been touring the country and raising awareness for Alzheimer’s disease and caregiving in communities of color for more than 13 years with the critically acclaimed stage plays Forget Me Not and Mama’s Girls. Over the last decade, Forget Me Not has toured over 27 cities in 10 states in an attempt to close the health disparities gap in underserved and disproportionately affected communities.

“This is the next phase of what we originally started with the Alzheimer’s Association 13 years ago. To come full circle and to be in a position to take the Forget Me Not project to Unforgettable is truly a humbling moment and I am looking forward to the impact that will be made in communities of color across the nation,” said creator and award-winning playwright and filmmaker Garrett Davis.

“This is the next phase of what we originally started with the Alzheimer’s Association 13 years ago. To come full circle and to be in a position to take the Forget Me Not project to Unforgettable is truly a humbling moment and I am looking forward to the impact that will be made in communities of color across the nation,” said creator and award-winning playwright and filmmaker Garrett Davis.

Older Black Americans are twice as likely to develop Alzheimer’s disease than White Americans. Black Americans are also less likely to receive a timely diagnosis, with many receiving a diagnosis much later in the disease, when their medical needs are greater.

“Unfortunately, there’s a lack of culturally appropriate and tailored programming that resonates with Black and Hispanic/Latino audiences as it relates to Alzheimer’s and other dementia research, care and support,” said Carl V. Hill, Ph.D., M.P.H., Chief Diversity, Equity and Inclusion Officer at the Alzheimer’s Association. “This community theater will give us the opportunity to deliver important education, awareness, support and other resources to these communities in a fun and entertaining way that will resonate well with audiences that have been vastly underserved.”

Unforgettable features a stellar cast of characters who were a part of the drama series Daddy’s Boys including Dartez Wright and Kenneth Pierce, as well as American Idol finalist Scott Savol, LeJuene Thompson from Donald Lawrence & the Tri-City Singers, and Yesse Rodriquez from the drama series My Family.

The theme song was written by songwriter and vocalist Blanche McAllister, one of the lead singers from the Grammy award-winning group Donald Lawrence & the Tri-City Singers.

For more information about Unforgettable and to reserve your free ticket for the performance, visit

Honoring Mother’s Day When Mom Has Alzheimer’s

Celebrating Mother’s Day, like other holidays, can be bittersweet and challenging when mom is living with Alzheimer’s. Mother’s Day, however, can remain a meaningful and enjoyable occasion for families facing Alzheimer’s and other dementia. To help these families with Mother’s Day celebrations, the Alzheimer’s Association offers these tips:

  • Take a person-centered approach. Focus on what is enjoyable for the person with Alzheimer’s, such as looking at family pictures or enjoying the person’s favorite food. If they get overwhelmed in large groups, a small quiet gathering may be preferable.
  • Keep it simple. Consider a celebration over a lunch or brunch at home or where the person is most comfortable. Ask family or friends to bring dishes for a potluck meal or have food delivered by a local restaurant or grocery store.
  • Connect with mom virtually. Schedule a FaceTime, Skype or Zoom call with mom and invite other family members to participate. Prepare ahead of time to ensure the platform you use is one your mom can access easily. Consider taking the call to the next level by adding a slideshow with favorite pictures of mom and cherished family photos.
  • Join in. If the person with Alzheimer’s lives in a care facility, consider joining in on any facility-planned activities.
  • Don’t overdo it. Sticking to the person’s normal routine will help keep the day from becoming disruptive or confusing. Depending on the person’s stamina, plan time for breaks so the person can rest in a quiet area away from noise and crowds.
  • Adapt gift giving. Encourage safe and useful gifts for the person with Alzheimer’s. If someone asks for gift ideas, suggest items the person with dementia needs or can easily enjoy. Ideas include: an identification bracelet, CDs of favorite music, comfortable clothing, favorite foods and photo albums of family and friends.
  • Find support. Many adult children may feel grief, sadness or guilt preceding or following a holiday. It can be helpful to discuss these feelings with a trusted friend or family member. The Alzheimer’s Association also offers support groups and tips for coping with caregiver depression and stress.

“It is important to celebrate all of the special mothers who have made an impact on our lives,” said Delia Jervier, Executive Director, Alzheimer’s Association Illinois Chapter. “Even though the celebration may be different from past celebrations, families can still provide a special day that their mothers will enjoy.”

More than 6 million Americans are living with Alzheimer’s dementia, with 312,000 here in Illinois Women are at the epicenter of the Alzheimer’s crisis with nearly two-thirds of women living with the disease and more than 60 percent of Alzheimer’s and dementia caregivers. More specifically, over one-third of dementia caregivers are daughters.

For information and support, visit the Alzheimer’s Association website at or call its 24/7 Helpline at 1-800-272-3900.