Association for Frontotemporal Dementias

From our Families

These blogs and vignettes are shared with us by members of our community whose unique perspectives offer support, encouragement and truly honest responses to others going through similar experiences. We appreciate their generosity in sharing some of their intimate thoughts, emotions, and experiences, and recognize that it is through this generosity that we will all find the comfort and support of community.

If you have a blog or story you would like to share, please contact us at info@theaftd.org [1].

Blogs

A Nice Day for a Hike [2] – a blog by Brandon and Katherine, as they hike the 2,200 mile Appalachian Trail in memory of Brandon’s dad, who had FTD.

Dementia: Stuck in Between [3] – a thoughtful blog by a group of 20- and 30-somethings who have a parent affected with FTD.

Putting One Foot in Front of the Other [4] – a blog by Nancy Carlson, author/book illlustrator whose husband has FTD.

FTD is my niche (apparently!) [5] - a blog by Deborah Thelwell, whose husband has FTD.

Dr. Patty’s Blog [6] – Dr. Patricia Bay writes about her husband’s recent diagnosis of FTD.

FTD’s Painful Road [7] – a blog by Kendra Gibson, whose mother has FTD/ALS, whose uncle passed away from the same disorder and whose aunt passed away from ALS.

Journey with Dementia [8] – a blog by Cassandra Jones, whose mother has semantic dementia.

the other dementia [9] – a blog by Kara Moloney about her family’s journey with FTD.

FTD Land [10] - a blog by Marlene, whose mother was diagnosed with progressive nonfluent aphasia in January 2011.

The Rookie Caregiver [11] – a blog by writer and PR professional Elaine Soloway, whose husband was affected with primary progressive aphasia.

FTD Isn’t Just Flowers Anymore [12] – a blog by Kelly on the West Coast about her affected father.

Rest.Stop.Ranch [13] – an eco-spiritual blog by Mary MacDonald, whose mother had FTD.  This blog features some short (2-5 minute) guided “breaks” with photos, breathing exercises, and other calm-inducing techniques.

Caring Bridge Blog by Lorraine Cox [14] – a blog about her husband’s struggle with FTD.

Matt Matherne [15] – a blog written by Matt’s wife, Amy.  Matt is affected with FTD.

Don’s Daughter [16] – a blog written by Melisa McElmurray, whose father is affected with FTD.

Living with Dementia [17] – a blog by Bruce Bane, an FTD patient.

FTD/Dementia Support Group [18] – a blog written by FTD patient Howard Glick.  A first-person look at living with FTD.

Julie’s Journey [19] – a blog written by Julie Krueger, a woman affected with FTD.

Stories/Poems

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. [20]

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 [21].  She also created a YouTube video [22] about their journey.

Poem.  Written by Lori Ruhlman

FTD is missing someone who is sitting right next to you.
It is aching with a loss but not being able to show your tears.
It is watching someone walk away ever so slowly … knowing you’ve already lost the chance to say goodbye and yet knowing it is too soon to say goodbye.
It is trying so so hard to hold on to a vision of the person you love, but having that vision grow fuzzy and fade right before your eyes.
It is feeling you have failed to preserve the vision; it is fearing you might never get it back.
FTD is missing someone who is sitting right next to you.
It is feeling guilty for the longing of what was before, for the forgetting, for the frustration.
It is trying to be nice and kind and loving even when you feel annoyed.
It is feeling false when you are loving and kind because your actions are not as genuine, honest and spontaneous as before.
It is the knowledge that you must appreciate the moment, the now; because today is the best it will ever be.
It is wanting and wanting to talk, to reach out, to delve deeper but knowing that the distance is already too great.
FTD is missing someone who is sitting right next to you.

My Mother - Rachel Goldring.  Written by Olivia Goldring

Olivia Goldring was a teenager when her mother passed away from FTD at age 53.  She shares some of her recollections in this short story [23].

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. [24]

A Mother’s Hugs Not Taken For Granted.  Written by Tonya Bina

Tonya Bina writes a tribute to her mother affected with FTD.  Sky-Hi News in Colorado printed the piece on Mother’s Day 2012.  Click here to read the touching tribute. [25]

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 [26].

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 [27].

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 [28].

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. [29]

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 [30]

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. [31]

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. [32]

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. [33]

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. [34]

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. [35]

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. [36]

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. [37]