My husband was diagnosed with frontotemporal dementia and passed away at age 39

• Ryan, the husband of Tia Collin, died of frontotemporal dementia at the age of 39.
• The illness made him forget Collin and their four children.
• This is Collin’s story as told to Kelly Burch.

I never believed in love at first sight. But when I met my husband Ryan, there was an instant familiarity. I was a 20 year old single mother recovering from a broken back. Ryan swore he would love my son and me, so we were married just seven months after we met.

Ryan served in the Navy, but when I got pregnant with our fourth child, he faced a long deployment on an aircraft carrier. He couldn’t stay away from the family for that long, so he quit military service.

At that time I was happy that my husband was home. Looking back, that decision makes even more sense because I know what came next. Ryan died of frontotemporal dementia at the age of 39. My kids didn’t get much time with their dad. I will be forever grateful that he was with them when he could be.

Ryan was my best friend and the neighborhood father

After leaving the Navy, Ryan joined the local sheriff’s office. He was a great officer and a great father. When he pulled into the driveway, not only our children but also the children from the neighborhood came to him. He was just so nice.

Ryan was my best friend to me. My beloved too, but it is our friendship that I will always miss. We had rich conversations about everything.

Ryan was the most laid back guy. We were careful parenting before that was a thing, and we were always patient and kind to each other. Our time together was short, so I’m thankful we didn’t fight much.

Around the age of 35 he started to change

All of that was what made it so shocking when Ryan started to change. He became completely apathetic. I thought it was work stress so I organized a vacation to Disney World to give us a break. During that trip, Ryan ran away with our kids, but came back without them. We were supposed to stay for two weeks, but we left after a week. I was so mad because I thought Ryan was just a jerk.

At home, Ryan had outbursts. He spent $35,000, our entire savings. I was afraid he was having an affair. We swore our kids would never be afraid of us, but they were starting to get scared of Ryan.

Then I asked him to leave. It was horrible – Ryan just couldn’t understand why I kicked him out, but I had to stay on the line for our kids.

Ryan was misdiagnosed with a mental illness

I didn’t know Ryan had problems at work too. At the age of 35, he failed a fitness test, psychological screening. He lost his job and our health insurance. His parents took him to a community mental health center, where he was diagnosed with schizophrenia and later depression with psychosis. None of those diagnoses suited me. Ryan had passed Navy and Police psychological screenings. He had no history of mental illness.

Meanwhile, Ryan was getting worse and worse right before my eyes. When I visited him with his parents, all he said was “How are the kids?” He started repeating and then slurping that line. In the end, all he could muster was “the kids?”

Within a year, Ryan was nonverbal and incontinent. He could barely swallow and spent a long time in the hospital. Everyone was ready to give him up and pressured me to send him to the state hospital. But I had to keep fighting for him.

I found Ryan’s diagnosis in a fiction book

During all this, I took the kids on a trip to see my family. On the way home I picked up a fiction book. A minor character had frontotemporal dementia and I saw Ryan in those pages. I was excited – we finally had an answer. But I realized that this is a terrible price.

I had to fight every step of the way to get Ryan tested. Finally, he went to a neuropsychologist. He couldn’t speak at all, but she asked him to write a sentence. He scribbled two words: “the kids?”

When his diagnosis was confirmed, we got in the car. I asked Ryan if he heard what the doctor said. He replied with the only word he spoke: “yep.” I said, “Ryan, do you know you’re dying?”

“Yes,” he replied.

I thought of all the conversations we had during our marriage. Ryan was here with me, but not here. It was such a deep loss.

Ryan died two years later, at the age of 39

Getting Ryan the care he needed was so challenging. No hospital wants to care for a demented patient with military training. The VA didn’t help. Finally, Ryan was placed in a hospice an hour and a half away. Every Monday, Wednesday, and Friday, I put the kids on the bus and went to visit Ryan, just walking the halls with him.

We had talked about life support when Ryan was healthy. Don’t let me live, he had told me. Now he was forced to live as his brain shrunk and carried him further and further away. There was no option to end his suffering, so the least I could do was be there for him.

Ryan lived like this for two years. I watched our kids become tweens and teens living in the shadow of a dying father. I read a lot about anticipatory grief at the time, but when Ryan finally passed away at age 39, I was devastated. I wanted to tear the pages out of every book about anticipatory grief.

That was almost 14 years ago. Today my children are doing well. I have two grandchildren. I turn 50 this spring and look forward to my future.

Our family was shaped by the pain of living through a diagnosis that held no hope. Ryan could never survive frontotemporal dementia, but I knew the rest of us had to survive and live on. That’s the best way to honor who Ryan was.