Empowered Together to End FTD
Empowered Together to End FTD
I am again joining AFTD’s "With Love" fundraiser in 2025 by sharing Charlie's and my love story below, to show how FTD changed our lives. I've set $333 as my initial goal because Charlie's favorite number was 3. December 3, 1967 was our first date, and first kiss, and even until the very end of his life, he shared this info with anyone he could. "3 is a good number!".
I am in the midst of preparing to move away from the home we built together in 1991, to be closer to my family so I’m just sharing our story for Valentine’s Day this year. Last year, we surpassed our goal and I’m grateful to everyone who contributed Before I leave our beautiful NC and the dearly loved community we’ve been lucky to be part of here, I’ll be providing other ways for folks to remember and honor Charlie, but for now, here’s a way to contribute to an organization that was lifesaving to me! Thank you for remembering and honoring our sweet Charlie!♥️♥️
An FTD Love Story
When my husband Charlie and I reunited at age 35 after going our separate ways for 17 years,
and we realized that the flame we had had in high school was still very much alive, friends told
me that I should share our love story. Ours was one of the stories that one might see depicted
on an episode of “Oprah”, or another inspirational show, about how magical it is to reconnect
with a lost love. Charlie looked me up after separating from his first wife, and called my
brother’s house where my nephew gave him my number. Within 8 months and after many
long-distance visits, letters and calls, I moved from Atlanta to North Carolina, and we began
our new life together, as a blended family that included two wonderful children, ages 3 and 5.
Charlie used to tell people that he would never forget the moment we met again in person,
after 17 years, and that looking into each others’ eyes, he knew that the love we had had was
still there, as strong as ever. He talked about it being surreal, and it was almost as if no time
had passed since our high school days. Even before our meeting in person, Charlie wrote
beautiful love letters, and sent me music we had loved in our high school days. He was a true
romantic! I fell back deeply in love with him. It was a magical time, and we often talked about
how much we wished our home to be a place of loving acceptance for many people, infused
with the love that we felt for each other.
A little over a year after we married, our son Taylor was born, bringing more joy than I believed
was possible, and we now were a family of 5.
My young stepson Carter settled on a nickname for me: “Chibs” which was a blending of our
names, Charlie and Libba, since he said it felt that we were joined at the hip. It was a fitting
name, reflecting the strong connection that Charlie and I had together. We navigated life as a
blended family, despite some challenges that all blended families face, and I felt so grateful to
have such a wonderful husband and 3 kids. Charlie was a creative, loving and fun Dad who
adored and had so much pride in all his children. I felt truly blessed beyond anything
imaginable.
We had 14 wonderful years together before FTD entered the picture. During that time, we built
our dream house (Charlie drew the plans) in the woods of beautiful central NC, and took great
pleasure watching our children grow and thrive. We were part of an amazing community of
folks living just outside Chapel Hill. The storybook romance we had grew into a more mature
love, and although we kept a feeling of connection and closeness, the shadow cast by FTD
started to show.
The behavioral variant (bvFTD) of Fronto-Temporal Degeneration is the most common sub-type
of FTD, and FTD is the most common form of dementia found in people under age 60. bvFTD,
was the type that Charlie had, distinguished from variants affecting language and movement.
By posting this story I am joining this year’s “With Love” fundraiser for the AFTD (the
Association for Fronto-temporal Degeneration) because I am passionate about the need to
promote better diagnostic tools. The lack of widespread medical awareness and
understanding of this disease, and the terrible frustration most families endure as they search
for a diagnosis (average time to get a diagnosis is 4 years!) is one of the most destructive parts
of this experience, and it almost took me down emotionally with Charlie who passed in August,
2020.
No matter what subtype of FTD a family experiences, they are all terminal illnesses, and all are
traumatic for everyone involved. But I believe that the behavioral variant may be the cruelest
form of the disease, as it steals from the person the very characteristics that make us human.
In Alzheimer’s disease, and even in Lewy body, and vascular dementias, memory loss is
prominent early in the disease. A person’s capacity to show love and to care about others’
emotions usually stays intact, but with bvFTD the most prominent symptoms are usuallywidespread apathy, and loss of empathy, instead of memory loss. Anosognosia, the inability to
see how one’s behavior affects others, is another feature of bvFTD.
When Charlie reached age 51, his personality began to change. He forgot or dismissed
birthdays and anniversaries and became very cynical and negativistic. Sarcasm replaced
kindness and humor. I began to believe that he had stopped loving me, or even liking me, and
the years of living with someone who appeared not to care about me took a huge toll. He
would interrupt me, get up and walk away as I shared important events, began lying about his
activities, and later began to say things that were very unkind, as in asking if I had killed my
mother. (As the disease progressed, his behavior worsened, but the apathy was present from
the beginning).
As with many bvFTD patients, Charlie’s early personality changes were not very evident to
those he didn’t see often, and he was able to appear funny, eccentric but mostly “normal”. He
also began drinking excessively, but only beer. It was a logical conclusion to see him as
suffering from alcoholism, and to attribute his personality changes to drinking too much.
Charlie’s FTD journey was a long and gradual one, lasting 19 years. Only in the last 5-6 years
did the dementia become more evident, and even then we believed that the alcohol had likely
damaged his brain. After a successful 30 day rehab, Charlie was able to stop drinking, and he
remained free of alcohol for 6 years before his death. But I believe that his abuse of alcohol
created a screen/plausible diagnosis that prevented us from seeing the FTD. I now wonder
how many other people are on the streets, in jail cells, or, if fortunate enough, in the rooms of
AA, due to FTD.
Charlie vehemently resisted seeking any medical attention, and we did not have a diagnosis
until we donated his brain to Mayo, and had a conclusive diagnosis of bvFTD, measurable by
deposits of a recently discovered protein called TDP-43. There was no indication of damage
from alcohol use. Prior to getting the diagnosis, even long-time friends whose healthcare
careers were focused on dementia, and FTD, dismissed my speculations that he had FTD, and
saw his problems as due to alcohol abuse. This was incredibly destructive, and I have
struggled with guilt and shame at being called an enabler.
I knew that I still had deep love for him, but I eventually detached, needing to protect myself
from the chaos created by an almost 70 year old toddler/man. By the time he passed, parts of
me felt dead or numb inside. I had become his caregiver instead of his wife. I also knew that
he needed me, and I was fortunate to be able to stay, and keep him at home with me until he
passed at home. Many families are not so fortunate, and patients often have to be placed in
care environments due to violent or unsafe behaviors.
It is my fervent hope that the FTD research that is underway, and supported by the AFTD, will
provide us with reliable non-invasive diagnostic tools that will allow families to know what they
are facing, and offer the benefits of early detection possibly leading to arresting the disease. If I
had known that what we were dealing with was FTD, I believe that my love and compassion for
Charlie may have been less affected by the cruelty of this disease. My love was almost
obscured by FTD and I have struggled to forgive myself about that. I am thankful love endured.
Toward the end of the disease process, patients will display many of the issues seen in other
FTD variants, and Charlie lost much of his ability to use words effectively. The sarcastic and
unkind edge disappeared. He would use sign language to show that he loved us. I hoped that
he knew that I still loved him, and would say to him “always have, always will (love you)”. It
came from a very injured place but I felt it deeply.
Now, almost 5 years since his death, I am more able to recall the man I married before the FTD
monster took its place in his mind. I miss him now, much more tenderly, and now am starting
to grieve him in a pure way. He would have been a fantastic grandpa, and I look forward to
telling our grandson stories of his Grandpa Charlie. Love is what endures!
Charlie Adams donated $100.00 and generously covered the transaction fee
For my dear friend, Libba, and her love and care for Charlie for so many years.
Rosemary Spielmann donated $50.00
Stephen Nichols donated $100.00 and generously covered the transaction fee
Susan Cotter donated $25.00
The Rainwater Charitable Foundation matched the previous donation