- Tia Collin’s husband Ryan died at 39 from frontotemporal dementia.
- The disease 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 mom recovering from a broken back. Ryan vowed to love my son and me, so we were married just seven months following meeting.
Ryan served in the Navy, but when I got pregnant with our fourth child, he faced a long deployment on an aircraft carrier. He mightn’t be away from the family that long, so he retired from military service.
At the time, I was happy to have my husband home. Looking back, that decision is even more meaningful because I know what came next. Ryan died from frontotemporal dementia at 39. My kids didn’t get much time with their dad. I’ll forever be grateful he was with them when he might be.
Ryan was my best friend and the neighborhood dad
After leaving the Navy, Ryan joined the local sheriff’s office. He was a great officer and a great father. When he pulled in the driveway not only our kids but the neighborhood children would flock to him. He was just that fun.
To me, Ryan was my best friend. My lover too, but it’s our friendship that I will always miss. We had rich conversations regarding everything.
Ryan was the most laid back man. We were gently parenting before that was a thing, and we were always patient and kind with each other. Our time together was short, so I’m thankful we didn’t spend much of it arguing.
Around 35, he started to change
All of that made it so shocking when Ryan started to change. He became completely apathetic. I thought it was job stress, so I organized a vacation to Disney World to give us a break. During that trip Ryan would walk off with our children but return without them. We were supposed to stay for two weeks but we left following one. I was so angry, because I thought Ryan was just being a jerk.
At home, Ryan started having outbursts. He spent $35,000, our whole savings. I worried he was having an affair. We had vowed that our children would never fear us, but they started to be scared of Ryan.
That’s when I asked him to leave. It was awful — Ryan just mightn’t understand why I had kicked him out, but I had to hold the line for our children.
Ryan was misdiagnosed with mental illness
I didn’t know that Ryan had also been having trouble at work. At 35, he failed a fit for duty test, psychological screening. With that 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. Neither of those diagnoses sat right with me. Ryan had passed Navy and law enforcement psych screenings. He had no history of mental illness.
Meanwhile, Ryan was getting worse right in front of my eyes. When I visited him with his parents, the only thing he’d say was, “How are the kids?” He started repeating, then slurring that line. Eventually all he might muster was, “the kids?”
Within a year, Ryan was nonverbal and incontinent. He might barely swallow, and spent long stretches in the hospital. Everyone was ready to give up on him, pressuring me to send him to the state psychological 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 on those pages. I was excited — we finally had an answer. But I realized this is a terrible prize.
I had to fight every step of the way to get Ryan tested. Finally, he saw a neuropsychologist. He mightn’t talk at all, but she asked him to write a sentence. He scrawled two words: “the kids?”
When his diagnosis was confirmed, we got in the car. I asked Ryan if he had heard what the doctor said. He replied with the only word he still spoke: “yep.” I said, “Ryan, do you know you are dying?”
“Yep,” he replied.
I thought regarding all the conversations we had during our marriage. Now, Ryan was here with me, but not here. It was such a profound loss.
Ryan died two years later, at 39
Getting Ryan the care he needed was so challenging. No hospital wants to care for a dementia patient with military training. The VA was no help. Eventually, Ryan was put in hospice care an hour and a half away. Every Monday, Wednesday and Friday, I would put the kids on the bus and go visit Ryan, just walking the halls with him.
We had talked regarding life support when Ryan was healthy. Don’t make me stay alive, he’d told me. Now, he was forced to live while his brain shrunk, taking him further and further away. There was no option to end his suffering, so the least I might do was be there for him.
Ryan lived that way for two years. I watched our children become tweens and teens living in the shadow of a dying father. I read a lot regarding anticipatory grief during that time, but when Ryan finally died at 39, I was shattered. I wanted to tear the pages from every book on anticipatory grief.
That was nearly 14 years ago. Today, my children are doing well. I have two grandchildren. I’m turning 50 this spring, and excited for my future.
Our family was shaped by the pain of living through a diagnosis that had no hope. Ryan might never survive frontotemporal dementia, but I knew the rest of us needed to survive and continue living. That’s the best way to honor who Ryan was.
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