My Husband Was Diagnosed With Dementia at 36. Here’s How I First Knew Something Was Wrong

Kristin Holloway

In 2016, Kristin Holloway’s 36-year-old husband, Lee, suddenly lost interest in his job and stopped taking care of his personal hygiene, among other drastic behavioral changes. His doctors suspected he was experiencing psychological distress—but after a series of tests, Lee was diagnosed with frontotemporal degeneration (FTD), the most common type of dementia in people younger than 60. Now, Kristin sits on the board of The Association for Frontotemporal Degeneration, where she helps fund FTD research and innovation. Here’s her story, as told to health writer Julia Ries.

Lee and I started dating in early 2013. We first met when we worked next to each other at his company, an internet security firm, for a couple of years. I didn’t expect things to turn romantic, but he separated from his wife around the time I ended an engagement, and we started to bond over our breakups with a lot of coffees and conversations about life. The relationship took off, and we got engaged in 2014.

Lee struggled with migraine for a long time. Even before we started dating, he slept a ton, got overly exhausted, and missed work due to his symptoms. When we got together, he said he wanted to fix his health and get to the bottom of his migraine attacks.

Because some studies suggest that heart murmurs might contribute to migraine, he was evaluated for a heart murmur he was born with at Stanford University. Some of his doctors recommended that he have surgery—specifically, an aortic valve replacement—to correct the murmur, and, the hope was, to alleviate his migraine. We decided as a couple that sooner was better than later and scheduled the surgery for February 2015, even though our wedding was approaching.

Lee’s six-and-a-half-hour open-heart surgery was a success, and everything moved ahead: He recovered as I continued to work full-time and plan our wedding, and eventually he felt well enough to return to work. In June of 2015, we flew to Hawaii and got married. It was a beautiful wedding, and we had an amazing honeymoon. Afterward, we returned home to San Francisco. Everything seemed good and normal, and in January of 2016 I found out I was pregnant.

In May, a little over a year after his surgery, things changed. Lee started regularly missing work and going in very late—more than he ever did in the past. He was given a performance improvement plan, which was shocking. This was his company, he was one of the founders…. It didn’t make sense. He stopped showering every day, and he’d wear one outfit to work on Thursday, then on Friday wake up and put the exact same clothes back on. This was odd: He’d always taken pride in his appearance.

I didn’t know what to do. I was six months pregnant and about to go on maternity leave. Lee was clearly struggling, so I suggested he take time off of work to rest. I thought that, maybe, he was still recovering from the surgery and possibly dealing with trauma from it. Eventually, he agreed—and in July 2016, he stepped down from the tech company. I was shocked and devastated, but I was also really concerned about his health and how he was acting. He was increasingly apathetic and didn’t seem as engaged in life. He just didn’t care as much about things he cared about in the past.

When he stopped working, his behavior sharply declined. He didn’t change out of his pajamas and spent a lot of time on the couch. He watched the same movies and TV shows on repeat. By September, he watched Home Alone about 10 times a week. He showed no motivation or desire to be productive. That wasn’t normal behavior for anyone, let alone my brilliant, amazing husband.

I started maternity leave in September, meaning I was home and around Lee a lot. I noticed he developed obsessive tendencies: He constantly counted the floorboards in our house and the trees in our yard. Meanwhile, his apathy got worse and worse. He obsessively talked about how he survived his heart surgery and needed to rest. He became hyperfocused on it. Again, I thought something psychological was going on that was affecting his recovery. But, at this point, I was nine months pregnant, so I was focused on having my baby—after that, we could figure out what was happening with Lee.

A week after my due date, we went to the hospital to have our baby. Lee slept through my entire labor and delivery. I had complications and needed to have a C-section, and, at one point, Lee popped up and got into a tense argument with my doctor about whether that was necessary. It was very unlike him to be that combative.

We had our son—who was happy and healthy—and went home. My mom came and stayed with us for three weeks. There was finally somebody else seeing what our day-to-day life was like, and she became concerned about his behavior too. The apathy and obsessive tendencies intensified that fall—he now touched every corner of the countertop and refused to shower. He became very nostalgic for people, places, and things from his childhood. He’d watch the same scene from movies over and over. I woke up to a new version of my husband every single day, and I was terrified.

I told Lee I wasn’t happy and needed more help with the baby—he really didn’t have a response other than “I’ll get better.” I worried it was a marriage issue—maybe this wasn’t the life he wanted. I hired a full-time nanny, which we hadn’t planned to do, and booked a session with a marriage and family therapist. During the first appointment I cried and he had a blank look on his face. The therapist asked Lee how he felt about my emotions and, again, he said he’d get better. I kept thinking, Something is very wrong.

The therapist told me Lee’s level of apathy was abnormal and recommended he see a psychiatrist. I started making appointments with all kinds of doctors, including our general practitioner, a cardiologist, a neurologist, a psychiatrist, and a neuropsychologist. Mind you, our baby was only a few months old. I was pumping milk in the car in between all of these appointments for my husband who, at this point, had trouble getting out of bed. I was in complete survival mode.

My husband was 35. His cardiologist said he was physically healthy—his blood work was normal and his heart looked strong—but that he could be dealing with psychological issues. In January 2017, we saw the neuropsychologist, who said there were two options: Lee was either having a deep psychological break or there was something wrong neurologically. Nobody had a clear-cut answer. I was devastated, and I felt like no one was listening to me. But the brain is complicated, and these were complicated symptoms in an otherwise young, healthy man.

The psychiatrist told me I was in for a long, tough road. I was like, “Well, what does that mean?” and he told me it was possible Lee had a rare form of early-onset dementia. I didn’t even respond. I was thinking, Dementia? This is the disease older people get when they start forgetting things. That’s not possible. That was the last thing I ever expected a doctor to say he had—I couldn’t believe it. Lee, meanwhile, was totally unaware of what this meant. He said he was still recovering from heart surgery and would get better. I thought maybe he was in denial.

I went back to work in February 2017. We didn’t have a diagnosis, but the baby was well-cared for and Lee could be by himself. The psychiatrist and neuropsychologist both said he needed to get brain scans, which would reveal any abnormalities, like atrophy in the brain. He got an MRI of his head and we met with a neurologist to review the results in March. At the start of the appointment, she conducted a few quick behavioral tests and said nothing seemed wrong with Lee—but then she reviewed the scans, which stated there was “atrophy in the brain that is inconsistent with the patient’s age.”

My whole world ended. Up until this point, I still had hope he had a severe yet treatable psychological disorder. But I knew this was confirmation he had a neurodegenerative disease. It was the worst-case scenario. I was heartbroken.

I called my boss, explained what the scans revealed, and gave my two-week notice. My job was such a big part of who I was, but I knew I had to stop working to focus on my family. My husband was not going to get better. Every moment would be the last time I’d be with a healthy version of him.

I booked an appointment at the memory and aging clinic at UCSF. I dropped all of Lee’s medical reports off and said, “My husband is 36 years old, he has atrophy in his brain, and we need answers.” In April, Lee had a three-day evaluation, during which a group of neurodegenerative specialists completed a thorough exam of his health, including blood tests, additional MRI scans, psychology assessments, and interviews with family members—his parents, brother, my parents, and me. We still hoped there was something we could do to help Lee improve. Lee was unaware of what was going on—he thought he was there because he previously had migraine and heart surgery. We met with a panel of doctors who told us they believed Lee had behavioral-variant frontotemporal degeneration (FTD).

I wasn’t shocked. Based on research I conducted and everything I learned about neurodegenerative diseases in the past few weeks, I suspected it was FTD—and now we had an answer. We asked what our options were, and the doctors said there were no treatments or medications that could help him recover, and that this was terminal. The best thing we could do was take Lee home and ensure he had a good quality of life. That was it. I felt so much grief, but Lee wasn’t even registering the severity of this diagnosis.

I went home and learned everything I could about how to take care of Lee and what to expect—which was that FTD is different for every single person. For the next year, I was his caregiver. He underwent more testing and scans, and we learned he did not have a genetic type of FTD, but a sporadic form that developed by chance (which, by the way, accounts for between 50% and 70% of all FTD diagnoses). I was relieved it wasn’t genetic, but that didn’t make it any easier: My family was now faced with caring for a progressive disease in a very young, otherwise healthy, man.

My parents visited and helped out a lot, and Lee would occasionally go stay with his parents. He started walking up to 10 miles a day—he’d bolt outside, leave our front door wide open, and cross the street with no regard for oncoming traffic. He’d also leave the baby gate open, which put our son at risk of falling down the stairs.

The situation wasn’t safe, and soon it became untenable. It became too difficult to care for Lee at home, and we decided that he would go live with his parents. I was now, in a way, a single parent, and looking at a future where I was the sole provider. I had to go back to work—we didn’t have the resources for me not to. I had to make the decision to focus on my son—I had to in order to raise my child, to survive.

Lee is now 43. For the past two years, he’s lived in a facility where he gets around-the-clock care. He’s still physically active, but nonverbal. The juxtaposition of my son’s development and Lee’s progression has been a wild journey: When my son became potty trained, Lee became incontinent. When my son started talking, Lee stopped.

Nothing about our life will ever be normal again, but I want it to be happy. I needed to have space from the situation and reclaim my life. Don’t get me wrong, I am very involved in Lee’s care and his doctor visits. We see him very frequently—about once a month—and that’s what’s appropriate for us.

In 2020, I reached out to The Association for Frontotemporal Degeneration (AFTD) and joined the board. I set up a fund in Lee’s honor—The Holloway Family Fund—and launched a yearly summit where leading FTD doctors and researchers come together to share the latest research and treatment options.

There was no hope of recovery for Lee. This was my way of turning the pain into purpose. In the face of what was a very hopeless, dark journey, joining AFTD has been incredibly rewarding. I’m not going to silently suffer—I cannot help my husband beat FTD, but I can help myself, I can help my child, and I can help this community of people who are affected by FTD. Even though there aren’t options for him, I really want there to be options for others in the future.

It’s really hard to save yourself before taking care of everybody else, but you have to so that you can show up and be present, smart, and strategic about the decisions you need to make on behalf of someone who’s sick. Along the way, some people might have been judgmental about the fact that I outsourced some of Lee’s care. I processed a tremendous amount of shame and grief about this. But I did what I did to save myself. I did it to save my son. I wouldn’t change anything I did. Throughout this entire journey, it was so important to me that I was there for my son and that I made time for myself. I wanted to carve out a life for myself independent from my husband and his diagnosis. It goes back to that saying: You have to put your mask on first.


Originally Appeared on SELF