Stories and Poems

Coping with FTD. Written by Cindy Odell

Having the unique experience of being a caregiver to three family members: her mother, grandmother and aunt, and someone diagnosed with FTD, Cindy is in a position to give some very thoughtful and appropriate advice. Cindy discusses topics ranging from Bathing and Eating to Care Partners, Support Groups, Anger, and much more in her 23-page paper. Find her tips and advice here.

Slipping into His World. Written by Tim Ramsey

Assistant Principal, Tim Ramsey, finds himself having to “slip into” his father’s world while reliving it as a Sergeant in the Air Force. Affected by semantic variant PPA, Tim has become unrecognizable to his father. In his eloquent story, he describes one night that changed the course of his understanding of how dementia had changed him forever. Read his story here.

 

My New Mom. Written by Lauren Massarella

Crafted as a post for The Sister Project, a lifestyle blog created by three sisters, “My New Mom” explores the range of emotions experienced on the journey of understanding, and then accepting, a changing mother-daughter relationship. Daughter Lauren writes, “I’m trying to be grateful for the woman she is now and the lessons she is teaching me.” Read the blog post here.

 

The Thief. Written by Lori Ruhlman

Having lost her husband, Thomas Ruhlman, to FTD earlier, Lori Ruhlman shares her experiences through this heartfelt poem titled, The Thief. She powerfully explains the unforgiving nature of the disease – and how it stole her husband’s identity and personality right before her eyes.

 

Oh, My Marguerite. Written by Doug Harrington

Caregiver Doug Harrington has penned a tender and inspiring reflection about his marriage and living with a spouse with FTD. He writes, “my Marguerite…. although she cannot talk to me, she talks to me with her eyes, her laugh, and her everlasting smile and we dance….” Read the essay here.

 

Dad Got Dementia When He Wasn’t Old, Neither Was I. Written by Christina Gebel

A young adult whose father had FTD shares her personal experience with his illness. In part, the article describes her journey through the dissonance of planning for her father’s passing and then funeral at a time when many peers were planning joy-filled milestones in their personal lives.

 

Thoughts About Kit in Her New Home Forever More. Written by Robin Jones

About one month after making the decision to move his wife to a long-term care facility, Robin Jones penned Thoughts About Kit…. The poem captures the conflicting emotions he experienced the day of the move.

 

Aphasia. Written by Roz Young Kubek

The poem Aphasia was received March 09, 2015, from Sally Tipton, wife of Steve, who is now in a memory impaired unit. He was diagnosed with primary progressive aphasia (PPA) in October ’99. She writes:
My 75 year old husband, Steve, was a high school English teacher and so his loss of language to progressive aphasia 15 years ago was particularly cruel. …One of his students, Roz Young Kubek, has become a poet and wrote a poignant poem sharing what he meant to her as a teacher, and her grief as his language slipped away. Former teacher or not, the poem may speak to others facing the loss of the ability to communicate verbally with loved ones.

 

Still Our Daddy. Written by Monica Yager

In this poem a daughter writes of the desire for people to view her father as the man she remembers, even as his illness progresses.

 

Caregiver. Written by Maureen Walsh

This poem describes one caregiver’s experience with the toll caregiving exacts.

 

Through the Eyes of a Caretaker.

In this essay, a husband describes his path to accepting his wife’s diagnosis. Click here to read.

 

Reflecting on Hope.  Written by Robin Albright

While having a particularly bad day, Robin Albright chooses to see that there is hope.  Click here to read a particularly hopeful piece.

 

Frontotemporal Dementia Sucks.  Written by Robin Albright

A wife describes the heartbreak of learning of her husband’s diagnosis and the struggles of managing the aftermath.  Click here to read her story.  She also created a YouTube video about their journey.

 

Poem.  Written by Lori Ruhlman

One of the difficult aspects of FTD is that the loved one is still physically present. In Poem, Lori Ruhlman wrestles with the emotion of that reality.

 

My Father Loves Birds.  Written by Jessica Dutton

Jessica Dutton crafts a beautiful story about her father affected with FTD and his love of birds.  Click here to read her story.

 

My Best Friend Is Still Here, but I Miss Her.  Written by Michelle Bearden

Michelle Bearden is a reporter for a Florida newspaper reporter whose mother, Barbara Newcomer, is in the end stages of FTD.  Her account of missing her mom, even though she is still alive, is an honest look at FTD from a caregiver’s perspective.  Click here for the full story.

 

A Message to the Courageous!  Caring for a Dying Loved One.  Written by Gary Radin

Gary Radin lost his father in 1999 to FTD.  His story tells how his family made adjustments to their new reality of living with FTD, but also how they kept their routines and included Gary’s father in family activities.  Click here for the full story.

 

Fighting Grandpa’s Dementia.  Written by Daniel Miller

Eleventh grader Daniel Miller recounts the time spent with his grandfather and how their interaction changed as his grandfather’s dementia progressed.  Click here for the full story.

 

Something about Mary. Written by Cheryl Fischer

Cheryl describes her mother, Mary, as vibrant, full of life and an inspiration for how to enjoy life.  In this essay however, she presents some of the challenges their family has faced providing care for Mary as she battled FTD these past 13 years.  Caregivers honor their loved ones daily with both small and heroic demonstrations of love in the long journey that is FTD.
Click here for full story.

 

A Song for Mom.  Written by LJ Miller

About 7 years ago, LJ began to wonder why she and her mom were growing apart. Always a phone call away, and a patient listener, mom seemed distant, uninterested, and negative. Not a kid anymore, LJ thought maybe she was too dependent, stopped calling every day, and started writing her mom letters asking what was wrong. She never sent the letters, and now knows that her mom would not have understood what was happening either. When mom was finally diagnosed, LJ realized it was not a passing phase, but the beginning of a long journey with FTD. And LJ turned to writing again…
Click here for full story

 

I’ll Take It. Written by Dolly Barr

Robert E. Barr had a Masters Degree and Honorary Doctorate of Christian Service. He worked as a minister and hospitalchaplain in Oklahoma City, Oklahoma for over 45 years, and had abeautiful singing voice that brought joy to many. His wife Dolly saw Bob gradually lose all his gifts during a six year battle with frontotemporal degeneration. When he died on September 7, 2008, Dolly offered this tribute that puts the devastating course of FTD in the context of Bob’s lifelong faith.
Click here for full story.

 

Daggers in My Heart. Written by Kayla Winters

Kayla’s grandfather was affected by FTD throughout her life. In this essay she describes travelling through the stages of his illness together with her family. At 16 she faces a choice about how to remember her once loving grandfather who has become so ill.
Click here for full story.

 

Lewy Body Dementia; different disease, similar heartache. Written by Debbie Fields

Debbie’s mom, Louise Gallagher, was 70 years old, just newly retired when she was diagnosed with Lewy Bodies Dementia in 2003. She died March 14, 2008. Debbie writes of the progression of Lewy Body Dementia and the heartache and sorrow that goes along with it. The journey is long, and difficult, but as she states at the end, “never let go, just hang on for the ride of your life.”
Click here for full story.

 

A mother’s search for meaning. Written by Jeanine Gierke

Jeanine’s son Bryan died on June 12. He was just 31, with a young wife and infant daughter, when he was diagnosed with FTD two years before. Here, Jeanine writes of the unique heartache a mother feels watching her child succumb to this disorder, and of her search to find some meaning and a way to cope.
Click here for full story.

 

The conflicting emotions of a husband and caregiver. Written by Bruce Richardson

Bruce Richardson’s wife, Diana, was diagnosed with Pick’s Disease in 1999, when they had been married for 33 years. He cared for her at their home until her death last year. Here, Bruce generously shares his thoughts and feelings about her illness, her death, and the ambivalence he feels now that he has been “freed” from his role as a caregiver.
Click here for full story.

 

My husband’s gift. Written by Kitty Roth

One woman’s account of the “special time” she shared with her husband who was diagnosed with FTD at the age of 55. The beautiful yet simple art they created together culminated in a portfolio of pictures to be shared with all who loved him, as well as a wealth of treasured memories that will live on with her forever.
Click here for full story.

 

In Our Dreams. Written by Helen Keough Sears

In this essay Helen compares her experiences with her husband’s FTD to a car being driven off course. Helen’s peace and comfort to withstand this bumpy ride comes from the God of Love who guides them and has not forsaken them on this journey. Click here to read the essay.