Tom and Marti at his surprise party, March 11, 2016 When Tom turned 60 in March of 2016, our family threw him a major surprise party. I wanted to make it special because I’d never really held a big party for him before, and his father died at age 59 of a massive heart attack so we all saw this as a milestone birthday. The evening included family, friends, food and (no surprise to anyone who knows Tom, a longtime professional trumpet player and worship pastor) a music theme complete with vinyl records lining one wall, note-shaped balloons atop black-and-white balloon towers and a musical staff where friends could write their own notes on (you guessed it) notes! I would never have pulled off such an incredible party without huge help from all of our children (forever kudos to our daughter Kristen, party planner and decorate extraordinaire). We scheduled it two weeks before his actual birthday because our two youngest daughters, both still in college, had spring break on successive weeks, and the weekend in between was the only time we could guarantee they could both attend. However, I could have pulled off the surprise element on my own. Even then, Tom’s mind did not hold onto dates and events. For at least a year before this, I had begun to wonder what might be happening with him. That night, I only needed one small lie to get him to the nearby church venue. “Remember? It’s David’s (a mutual friend’s) birthday, and they’re having a surprise party for him. I asked you, and you said we should go.” Of course, no one had invited us to this nonexistent party, and we had never discussed anything about going to the church. But I knew he would think he’d just forgotten one more conversation. Everything happened exactly as I thought, and we walked into the fellowship hall as scheduled. What happened next gave the party a personal subtext I’ll never forget. As we stood at the door with all our children along with many friends calling out, “Surprise,” I watched Tom turn and stare. Turn and stare. Stare some more. He looked at me. “These people don’t even know David,” he said at last. I stood on tiptoe, gave him a hug and whispered, “This party’s for you, baby. It’s your surprise party!” Only then did the understanding come over his face. But for the next 10 minutes or so, he still seemed in shock. Later, he said he was so surprised that he couldn’t process it all. And I don’t doubt that a bit. But what I also believe was that his brain was already showing definite signs of decline,...

Before beginning a Hunt, it is wise to ask someone what you are looking for before you begin looking for it. —Winnie the Pooh “By the time they’re diagnosed, most people with dementia are already mid-stage in their disease just because the diagnosis process is so long,” the facilitator told our class of dementia caregivers. “I would say on average, most people take three and a half years to get diagnosed.” No one else looked surprised by this information; they’d no doubt heard it before. But it shocked and energized me. By the time of this class (January 2020), I knew my husband suffered from a dementia called frontotemporal degeneration (FTD). I knew FTD is considered a rare dementia (only 10-20% of people with dementia have FTD), is typically an early-onset disease and is often misdiagnosed. I knew that in our case, I’d suspected a problem for more than five years and had actively pursued a diagnosis for more than three. I knew that during that pursuit, my husband had lost three jobs in a row and given away more than $25,000 to online scammers while two neurologists and a neuropsychologist were still telling me he had no significant cognitive issues. But really? The average length of time for a dementia diagnosis is three and a half years? Even for someone without a rare type? Some of the other dementia statistics stagger me too. Across the globe, experts anticipate that dementia rates will double every 20 years, with an estimated 81 million cases by 2040. Accurate diagnosis matters because the treatments for dementia vary with the disease. In the case of FTD, some of the medications used to treat other disorders can even cause harm. Accurate diagnosis also matters because of pain. I don’t refer primarily to physical pain but to the mental, emotional, financial, and spiritual anguish that touches so many families as dementia rakes its ugly claw across their lives. And so I write. For my husband, who remains largely unaware of the depth of his cognitive issues. For my children, who face the pain of watching their once-vibrant father fade. For other dementia families whose lives have been tragically and permanently disrupted. For my fellow caregivers, who need to know more than I did when we began this journey down a path we did not choose. And for all those who need to see how this set of diseases leaves its ugly imprint on the lives of individuals created in the image of God. Although I’ll try to provide helpful links, I’m not a doctor or researcher, so please don’t look to this blog for medical advice or counsel. What I hope to share here are small glimpses, snapshots as it were, of dementia as experienced by our...