Dementia is a cruel, unpredictable disease that doesn’t just affect the individual diagnosed, but also their loved ones. It steals memories, changes abilities, and disrupts lives in ways that few can truly understand until they live through it. This is a story about one couple’s journey through the diagnosis of Frontotemporal Dementia (FTD) and aphasia, a disease that has left one person physically present, but mentally lost. It’s about love, life, the emotional toll of caregiving, and the heartbreak of watching a loved one fade away. Yet through it all, there’s an unwavering commitment to refusing to go down with the ship.
Understanding the Diagnosis and Initial Impact
When you’re living a life with someone, it can be difficult to pinpoint the exact moment when things begin to change. For the narrator of this story, it started in the winter of 2020. She and her husband, John, had traveled together for several months before they both fell ill in early February, long before the world knew about the threat of COVID-19. John, known for always having the worst of something, started mentioning his memory issues. She assumed it was simply brain fog from their sickness, dismissing it. But soon, the signs started becoming impossible to ignore.
The First Signs of Change
The early signs were subtle, but upon reflection, they were there. John, once sharp and attentive, started doing things that were out of character. During dinners, he’d leave her sitting alone at the table to take phone calls. He would make strange comments like, “That’s your favorite,” even when it made no sense. And, despite their years of connection, he seemed to never listen or understand what she was saying, often responding with an indifferent “Yeah, right.”
In hindsight, these actions were more than just quirks or stress responses. They were early indicators of something deeper. John himself started noticing it around 2016-2017, when he struggled to recall simple things, like the names of animals or objects. But it wasn’t until 2022, after much uncertainty and frustration, that they finally received the diagnosis: John had Frontotemporal Dementia (FTD), specifically the semantic variant, which also led to aphasia, a condition that severely impacted his ability to communicate.
The Gut-Wrenching Diagnosis
Receiving the diagnosis of FTD was gut-wrenching for both of them. The narrator, who had just lost her mother a week before John’s diagnosis, found it hard to process the news. She’d never even heard of FTD. John, however, was more familiar with the condition, having heard about it in connection to a sports coach who had died from it. Despite his initial acknowledgment, John remained mostly silent about his diagnosis. His main request to his wife was for patience, as his brain no longer worked as it once had.
Emotionally, it was a hard blow. The couple had spent over three decades together, and this diagnosis felt like the beginning of the end. In the midst of her grief, the narrator found herself not only grieving for her mother but also facing the gradual loss of her husband.
The Struggles with Aphasia and Communication
Aphasia is a cruel companion to FTD, and it’s something that’s difficult to truly understand unless you’ve lived with it. John’s ability to communicate declined rapidly, and as his speech became more disjointed, so did his ability to perform his job. He struggled with tasks he’d been doing for years and, despite his increasing frustration, couldn’t seem to articulate what was happening inside his mind. His temper flared, likely due to his inability to understand simple questions or instructions.
The challenges became daily obstacles. The narrator had to constantly adjust to John’s changing behavior and declining communication skills. Though she loved him deeply, the frustration of watching him struggle was hard to bear. They would no longer talk like they used to. The man she knew was slowly disappearing.
Adapting to a New Normal
As John’s symptoms progressed, the narrator had to find new ways to adapt to their daily life. A typical day for them now starts at 7 a.m., followed by a visit to Wawa, a ritual they’ve maintained since his license was suspended in January 2024. Afterward, John spends most of the day watching TV and napping, with the biggest challenge being getting him to shower, brush his teeth, and change clothes.
Over time, the narrator developed routines to help manage the day-to-day tasks. For instance, she discovered that if she turned on the shower for John, he would get in, and sometimes he would dress himself as if anticipating what would happen next. She also began putting toothpaste on his toothbrush and guiding him to the bathroom, steps she once never imagined she’d have to take.
However, there were still moments when John grew frustrated, especially when she touched his personal things or cleaned around the house. For the narrator, the hardest part was seeing him struggle to communicate. He could no longer form words to carry on a conversation, and any attempt at a meaningful exchange was futile. His understanding of language faded, and as time passed, the communication barriers became even more pronounced.
The Emotional Impact of Caregiving
Caring for someone with FTD and aphasia is a lonely and emotionally draining journey. The narrator reflects on how the disease has altered their relationship. No longer a wife in the traditional sense, she has become a caregiver. The reality of the situation weighs heavily on her, and the feeling of loss is constant. The love they once shared is no longer easily accessible in the form of shared conversations or activities. The disease has taken that from them, and it’s heartbreaking.
In a poignant moment, the narrator shares a line she heard on a podcast: “I am no longer a wife; I am waiting to be a widow.” The weight of that sentiment struck a chord, as the reality of watching a loved one slip away gradually sinks in. The hardest part has been the loss of the man she married — the man who shared their memories and their life together.
Finding Strength and Support
Throughout this journey, the narrator has found solace in the support of her family, friends, and an online community of others dealing with FTD. Though the disease has isolated her in many ways, the support of these individuals has been invaluable. She also offers advice for others starting this journey, recommending they seek the help of an eldercare lawyer early on, take pictures and videos, and gather as many memories as possible before the disease takes even more.
The narrator’s strength comes from her family, especially her grandchildren. They bring her joy and purpose, reminding her that there is still light in her life, despite the shadows cast by dementia.
A Final Message
Reflecting on her journey, the narrator’s message is one of love, resilience, and the unbreakable support that continues to exist, even in the face of such a devastating diagnosis. To her husband, she would say: “I love you. Thank you for everything you did for our family. I miss the man I married especially your voice.”
Despite the relentless advance of FTD, the narrator is determined not to let this disease take everything from her. She refuses to go down with the ship. Instead, she will continue to navigate the storm, buoyed by the love and support that still exists in her life.
