Larry Adcock was diagnosed in February 2022 at age 56 with Frontotemporal Degeneration, a form of dementia that can affect people as early as their twenties, or as late as their 80s. He received a secondary diagnosis of ALS, Lou Gehrig’s disease, in September 2022. His disease progressed quickly, with his family seeing physical and cognitive changes weekly, sometimes daily. Larry passed away at his home on December 7, 2022. This is a story of enduring love, one that will transcend death.
We met as children – I was eight and he was ten – at Eglin Airforce Base. It was 1976, the bi-centennial, and I remember all the fire hydrants on base had been painted red, white and blue to celebrate. Our fathers worked together in the Munitions Squadron, and we lived in the same quad of townhomes. Our parents played Pinochle on the weekends, so us kids hung out together a lot, Larry’s older brother, Chuck, antagonizing Larry and us three girls, or maybe the other way around, I don’t know.
There was always this otherworldly quality to Larry. As a young boy, he was funny and fun-loving, gregarious, fearless and adventurous. But he also had this quiet intimacy about him – he had a way of tuning into a person, getting right up close to their soul, and before they even knew what hit them, they were opening their heart to his and calling him friend. I remember, too, his eyes always seemed to be a different color, sometimes gray, sometimes a deep, almost violet blue, sometimes a hazel green.
He asked me to be his girlfriend one day at school with a note, which made me blush the second I opened it:
Roses are red, violets are blue,
sugar is sweet and so are you.
Will you be my girlfriend?
ð YES ð NO
My 8-year-old brain really didn’t know what to do, so I blurted out “I don’t know, I have to think about it!” and then I ran for the bus as fast as I could.
Later that night, about the time my mom was making dinner, I picked up the kitchen phone to call him. I was so scared, my heart pounding out of my chest. “Yes.” I said when he came to the phone. “Yes, what?” He asked. (My mom was staring at me with intense curiosity) “The NOTE….” “Oh, yeah! Super! Well, see you tomorrow in school!” The deal sealed, we were from that point on, “boyfriend and girlfriend.”
This sweet relationship lasted throughout our post at Eglin and beyond, after our fathers got new orders and our families went to different duty stations. Our families never lost touch, visiting when we could, sending Christmas cards and the like. Each time Larry and I saw each other was this new rediscovery, and we marveled at the way each of us was changing. One visit I would be taller, the next Larry would be taller, and our souls just fit right back together they way they always had.
As we got older, we both explored other relationships, one or the other always with a boyfriend or girlfriend, but never anything as close as what we felt for one another. But our timing was never right, and Larry and I grew apart. I eventually married another, and Larry continued his life as a bachelor, coming close to, but never going through with marriage.
When my first marriage eventually fell apart, serendipity – or rather, my sister – intervened. She was celebrating her 32nd birthday and knew I was having a difficult time with the pain that my marriage was over, so she invited me to get away for a weekend. She also invited Larry, hoping to make her husband a little jealous, because he just wasn’t being very attentive to her. It was the first time we’d seen each other in years - 24 years, to be exact. We all had a GREAT time together, clubbing, hanging out in the hot tub, catching up….
It was late, LATE, Saturday night, and everybody else had turned in for the night, but Larry and I weren’t ready to throw in the towel. We stayed up almost all night talking - honest, we were JUST talking - but at one point he stole a kiss - and what a kiss! He says he saw fireworks, I certainly did, but I put on the brakes pretty quickly, still officially married, divorce in progress. I told him I just couldn’t, wouldn’t. It wasn’t right, and I didn’t need to complicate an already complicated situation. So, we kept talking into the night, only giving up the ghost when we were absolutely exhausted. But the flame was ignited, nonetheless. It was four months later before we spoke again.
Unexpectedly, Larry sent me two dozen beautiful roses for Valentine’s Day. He knew it was going to be a lonely one for me and wanted me to feel loved. I called him that night, and the next, and the next, and soon we were talking every night, and sometimes a few times during the day, too. One night, deep into our conversation about my complicated life Larry said, “You know, I think I am just going to move to Texas and court you!” To which I replied, “Larry, if you think you are going to move here and DATE me, you’ve got another thing coming. I’ve watched my girlfriends divorce and date and their kids went through the ringer. I’m not about to put MY KIDS through something like that. I don’t want you to move here just to DATE me. If you are going to move here, it’s because you want to BE WITH ME, for good.”
I must have fallen right into his trap, for Larry chuckled that particular Larry chuckle and said, “Why, Elin, that almost sounds like a marriage proposal!” I did a whole lot of backpedaling - “Whoa, whoa, whoa, wait a minute, no that’s not at ALL what I meant…” (splutter, splutter…)
Two weeks later, Larry had packed what he could, sold what he couldn’t and moved to Texas. I don’t think he even knew where he was going to be staying, but somehow, he figured it out and took a room with a friend. We were married a year later.
The next fifteen years were absolutely idyllic – Larry took my young sons under his wing as their stepfather, becoming a scout leader, soccer coach, and friend to them. Our own relationship bloomed in a way I had never experienced before – him putting us all first in his life, building us up, praying over us, leading our family on great adventures. The playful spirit of his boyhood remained, and he was so, so pleased to show us how to really enjoy our lives in a way we never had before. We had a son together, and he showered that boy with love and attention. They truly were best buds.
We had many, many close friendships, were active in church, and had a real sense of purpose in life that went beyond the confines of our own relationship. We were both of us greater than the sum of our individual parts, becoming better people than we ever had been before. Larry was the kind of guy that people loved and could depend on, helping to make home repairs, rescuing a friend whose car had broken down on the side of the road, being the consummate host at our many, many dinner parties. He was the type of person who made certain that, wherever he was, and whoever he met, he made sure to lift people up and make them feel important. Our lives were so full, and I was so proud to be his partner in life.
After my two oldest grew to adulthood and moved out of the house to start their own lives, Larry and I decided it was time for us to move back to Florida to be closer to family. It was difficult to say goodbye to the life we had built together in Texas, but we were excited to begin again in a new place, seeking out exactly the right home to build the next chapter. The move put us right where we needed to be to help our families through some difficult times – we soon lost my mom, then Larry’s mom, then my sister’s husband and finally, my dad. All those losses took a toll on us emotionally, each of us reeling a little from all the changes. I spent a lot of time traveling back and forth between Northwest Florida and Tampa to help support my family while Larry held down the fort with our son and his dad. Through it all, I felt Larry and I were growing closer and closer to one another, supporting each other through all the heartbreak. Until one day, about two years ago, I noticed something was different.
Larry wasn’t the playful, helpful, loving father and husband anymore. He wasn’t participating in daily life as he used to, no longer coming up with fun ideas for us to do as a family, instead spending more time alone, hanging out in the shop with one of his cars, just biding his time between waking, working and sleeping. He was coming home at lunchtime to take a nap before slamming down a sandwich and returning to his delivery schedule. He fell asleep on the couch, too, before dinner, not coming to hang out with me in the kitchen as I cooked our evening meal, as he always had done before. He didn’t initiate conversations with us anymore, wasn’t smiling. He seemed depressed and very disconnected from us. I knew something wasn’t right, but didn’t know exactly what it was. I was so confused, this wasn’t the man I had married. He wouldn’t seek help from his doctor, insisting he was “just tired.”
Oct 11, 2021 is the day I was hit with the realization that Larry was ill. He had, over the course of 12-14 months, become almost unrecognizable to me, and in all honesty, I didn’t understand the reason for his emotional distance, the apathy, the lack of connection and the careless comments. Until that day, when came home at lunchtime and told me he had been fired from his new job as a bus driver, a job he had recently decided to take because the delivery job was just so exhausting. He had been telling his co-workers that he was carrying brass knuckles and a box-cutter in his backpack, that he would carry them with him on the bus in case “the kids tried to attack” him. It was at that very moment that I understood, with amazing clarity, “this is brain disease.”
The next few months were a blur of emotions and desperation as we researched the possibilities and sought out doctor’s appointments (everyone was backed up due to COVID). I couldn’t believe the difficulty in just getting to a diagnosis of Frontotemporal Degeneration, and once we finally got it, was so disheartened, knowing from my research there was absolutely NOTHING that could be done. No resources, no treatment, just sympathy and the instruction to “get your affairs in order” and “be sure to practice self-care.” As the months went on, we learned all could from our group of “Redwood Warriors”, a support group of FTD caregivers who hold each other up and lead each other through this most difficult journey. I soon learned, the love of my life was already gone, his personality irrevocably changed, his brain already actively dying. All that was left was to keep him safe, and ourselves sane.
I can’t tell you how heartbreaking it is to watch the light die in the eyes of the one who once had eyes only for you, but now has the ability only to look inward at himself and the memories that make him who he is. Larry showed symptoms of the Behavioral variant of FTD, as well as growing aphasia, the loss of words that eventually render a dementia patient mute. In addition to extreme apathy, loss of executive function and a loss of semantic knowledge, Larry’s emotional affect was extremely flat. He was still so, so polite, but the passion that he had for us was gone. He always thanked me for dinner, and repeated “I love you” back while he still could, but his loving gaze and his careful touch had evaporated with his synapses. My friend, my partner, my love was here, but not here, and my world came to a standstill.
Most of 2022 was spent accommodating Larry’s illness, finding caretakers to assist him while I continued to work from home, seeking information and watching for changes. His progress was fast, too fast, for what I had learned about FTD, and I began to suspect we had a secondary illness. Larry was showing signs of respiratory distress, difficulty breathing and muscle weakness. I was hearing a strange noise when he swallowed, and he was beginning to choke when he ate or drank, he sometimes bit his tongue painfully while eating. I could see the muscles of his arms and legs jumping sporadically, a symptom known as fasciculations. We all have twitching muscles sometimes, when we have overworked a muscle group, or are overly stressed, but this was happening in all his muscle groups, in all four limbs as well as his face and tongue, all at the same time. My suspicions confirmed in September of 2022, Larry was also diagnosed with ALS – Lou Gehrig’s disease.
Both FTD and ALS are terminal diseases, but ALS is particularly ruthless. Breathing and swallowing issues often follow the limb weakness and paralysis, but when they appear first, and when they accompany FTD, a patient just doesn’t have any time at all. We were forced to decide quickly if we would employ any of the usual interventions one does to preserve life with ALS – artificial ventilation, a feeding tube, medication to slow the progress. But Larry’s FTD, as well as his advance directives, put into writing as we “got our affairs in order” informed our decision. Not only would he not tolerate any devices – I couldn’t even keep an oxygen cannula on him – his original instructions were, “no ventilator, no feeding tube”. Even though the cognitive impairment was already beginning, he knew what the ramifications of both were, and he was decisive when we met with our lawyer. As well, his ability to speak was already gone by the time we received the ALS diagnosis, and I knew there would be no way for him to tell us if he was in pain, if the tubes were blocked, if he were nauseous…. And so, we did nothing.
Or rather, we did the only thing we could do, and that was to continue to love on him, ease his anxieties with CBD, tempt him with his favorite foods, take him on field trips to see his father, to Chick-Fil-A, to Culver’s and McDonald’s - his favorite restaurants - where he would hug on the lobby attendants and give knuckle-bumps to all the people he met there. He was always a sociable guy, but now was hyper-focused on meeting every person face-to-face, giving them a little piece of his kind heart everywhere he went. When I realized he was leaving the table to spit out the tiny amount of food and drink I was getting into him, I knew we had limited time. Even with his confused mind, he knew that to swallow meant he would choke and not be able to breathe, because he no longer had the muscles to cough and clear his airway. He chose to breathe, rather than eat, instinctively knowing that without breath, he could not live. Devastated, but determined, I gathered friends and family for one, final family celebration, where we could all spend some final moments with him and tell him how much he meant to us. I don’t know if he really understood what people were saying, but he was happy to see them, and it was a healing time for all of us.
Alone, these two diseases are insidious; together, they are almost unbearable. Our son and I watched Larry lose his purpose, and his strength, and his joy, and his SELF. We watched him lose US, drawing more and more inward as his disease progressed, unable at the end to understand the words of comfort that we shared with him, the words of love, the encouragement to rest. And we watched him die, slowly, desperate to stay alive, refusing to close his eyes, somehow understanding even in the chaos that was left of his mind that if he did, he would never open them again.
Throughout this painful journey, we focused on relishing the little things, looked for the joy every day as we all battled this horrible illness together. Drinking in every precious moment, savoring every second. We have no regrets, having given him the most loving, gentle descent possible. And now that he is gone, now that he is once again WHOLE, we are grateful – for all the support and love that we received along the way, for the memory of his joyful presence, his love for us, his strength of character, his calm assurance and bravery in the face of all the ills of the world. We remember all those things, and they are comforting us as we walk through our grief.
We will never, ever be the same again. But the hole left by his absence is filled with beautiful memories, and light and love and those things are sustaining us. As we heal from this, we remember his joyous face, hear the love in his voice and bask in it once again, those things having been gone from his daily affect long ago.
I can truly say “It is well with my soul,” for my soul is forever entwined with his, and will be forever encapsulated by the love that he poured over us every day of his life. And our son and I will continue this journey together, one step in front of the other every day, supporting one another as we go
