In a recent article published on the website The Cut, author Katherine Nichols shares the tumultuous FTD journey that followed her husband’s diagnosis.

When their relationship began, Nichols and her husband “E.” had an idyllic marriage that she characterized as a “true partnership.”

“He welcomed and treated my children as his own,” Nichols said. “We sought and honored each other’s advice. We made each other laugh. He brought me coffee at five o’clock every morning before we ran seven miles at a relentless pace, always leaving me feeling a step behind.”

The couple’s first years together were energetic and fulfilling, but the pace of those years would make it difficult to recall when E. began to experience his first difficulties. Over time, he started having issues processing information, forming sentences, and completing tasks at work. Nichols emphasizes for unaware readers how subtle and sporadic the onset of FTD is and how difficult it is to spot early on.

As months passed, E.’s behavior grew more erratic, in contrast to his usual demeanor. Nichols writes that he experienced mood swings, lied more frequently, had difficulty managing finances at home and budgeting at work, and even began to say angry things like “you disgust me” to her. Nichols writes that she repeatedly tried to persuade E. to see a doctor, failing to convince him and receiving uncharacteristic responses from him like “you’re the problem.”

E. eventually sought medical help; in the evaluation’s lead-up, Nichols writes that E. was deeply affectionate towards her. Later, after an intensive series of screenings, E. was diagnosed with primary progressive aphasia (PPA). On the way back from the appointment, E.’s behavior was completely different; he was furious with Nichols for speaking truthfully to their care team.

Two weeks after diagnosis, the family began preparing for a long-planned trip to Washington, DC. But E. abruptly decided to stay home and clean the garage; Nichols believed he needed time to process the diagnosis.

While on vacation, the couple communicated daily, exchanging loving messages. Upon returning home, however, Nichols discovered that E. had not only cleaned the garage, but furniture was also missing from their home. E. then told Nichols that he had moved out and filed for divorce.

Nichols fought the divorce at first, receiving conflicting advice from attorneys and ethicists that she sought advice from. She writes that battling the divorce felt like a “moral imperative”; she was devoted to her husband and the oath of her marriage and had promised E. that she would never leave.

“Eventually, that battle threatened my children’s welfare, my health, and my finances without benefiting him the way I intended,” Nichols said. “So I capitulated without walking away — simultaneously vowing to continue helping him however I could as I settled into a townhouse with my children and started a new job.”

After their divorce, E. continued to court Nichols between bouts of detachment. However, through it all, Nichols stood by E., noting that her commitment to “do the right thing” didn’t waver.

Throughout her journey, Nichols turned to her father – talking to him constantly for reassurance and guidance. When things got tough, Nichols’ father was able to look at the situation objectively and guide her to the best decision.

“I felt like a diver rising from extreme depths and darkness, unable to see the way up, at risk for blackout and decompression sickness,” Nichols said. “My father was the anchor line directing me to the surface, and I held onto him as if my life depended on it.”

A few years into the FTD journey, though, Nichols writes that her father began to experience eerily similar symptoms. In addition to cognitive decline, Nichols’ father experienced hallucinations and physical symptoms. He was later diagnosed with Lewy body dementia.

Wrapped up in sorrow and helplessness, Nichols says that she always wanted to “do more” – but only when she learned to step back did she see how much the love and support she gave meant to them.

“[During my last visit with E.,] verbal communication was impossible,” Nichols said. “I sat with him, saying and doing little beyond showing him a few pictures and holding his hand. His thumb stroked my palm with a familiarity that replaced any last words we might have spoken.”

Do you need advice for your own FTD journey? AFTD’s HelpLine can provide personalized guidance to help you through everything from getting diagnosed to finding care. Contact the HelpLine at 1-866-507-7222 or info@theaftd.org.