Photo by Shirley Mitchell on Unsplash The truth of this Streisand classic has resounded in all our hearts over the past two years-plus. I knew the enforced time at home would prove more challenging for Tom (the original “E” in extrovert) than for me, the confirmed introvert. When the lockdown ended and we began getting out again, the joy I saw in his face and heard in his voice convinced me that we are indeed people who need people—and we would do our best to stay safe, but social.  I’ve written about the blessings of family and how much we treasure time with our five children, our two sons-in-love, and our grandson. We thank God for them every day, and as I wrote in last week’s blog, we couldn’t have survived the pandemic (especially the adventures of 2021, which I’ll share in an upcoming post) without them. We’re also grateful for extended family across the country (you know who you are, and we love you).  In addition to family, I am increasingly grateful for friends, who continue to give us the kinds of gifts we hold close in our hearts. Below, I list only a few:  — The friend who sends Tom brief notes with links to cartoons that mesh with the quirky sense of humor they share. Tom rarely looks at email these days, but he does pay attention to those. Better yet, they make him smile.   — The college friend of Tom’s who visited us early in the lockdown. He lived in Michigan, so when Tom told me he would be in the area for the weekend and wanted to stop by, I was sure this Reservist must have a military event. Only partway through his visit did I realize: There was no military event. Our friend had driven hours from home, spent the night in a motel, then driven several more hours that morning to reach us—only to drive all the way back to Michigan that same day. That’s more than friendship. That’s the sacrificial love of Jesus.  — A missionary friend from several states away whose husband also has a frontal-lobe dementia. She and I had only met online until she went out of her way to stop by in person, also during the first phase of the lockdown. Even our quick side hug on my front porch meant a great deal to me—but as not as much as the prayers, hard questions, and support from someone whose path looks startlingly similar to my own. She brought me a sunflower, a lovely metaphor for the brave beauty that stands and shines through even the darkest of circumstances.  — The college friend of Tom’s who messaged, then called...

Photo by Colin Davis on Unsplash It was the best of times; it was the worst of times. It was the age of coronavirus; it was the epoch of pandemic. We had dementia before us; we had faith behind us.  And through it all, we had a God who loved us and provided for our every need.  We moved to our new home in the upstate of South Carolina in late November of 2019, right as the first echoes of COVID-19 sounded in far-off countries. We had only just started to settle in when the lockdown came, and especially because of Tom’s dementia, we exercised what many describe as “an abundance of caution.”   “You don’t want him in the hospital without you,” our primary care doctor told me. “And that’s exactly what would happen.”   So we watched church services online. We visited with faraway family members on the phone and online. Our local daughter and her husband did our grocery shopping. And for many months, we saw few people other than medical professionals—and family.  We were then—and are now—so thankful for family. Yes, we could have quarantined from them as well—but without that at least weekly connection with our daughter, son-in-love, and preschool-age grandson, I’m not sure what would have happened. We needed those hugs, that laughter, that break from our increasingly quiet routine.   Tom needed that. I needed that.  As the lockdown wore on, a temporary family member joined us: a teenage foster grandson, a former student of our daughter’s. Arriving in November 2020, he would only live with her family for the rest of that school year.  You might not think a fifteen-year-old special education student who had lived his entire life in South Carolina and a sixty-five-year-old man living with dementia who had traveled the world as a professional musician and pastor would have much in common. But in this case, you’d be wrong.   We figured it out the first time “H” came to visit. Our daughter often taught from home, and sometimes H had school from home as well. But he didn’t always have to log in during the day, so he sometimes came to us instead.   “I have to work, so he’ll be spending most of the day with Daddy,” I told our daughter the first time she asked if H could visit.  “I know, Mom. They can just hang out.”  And hang out they did. Turns out they had simple board games (Uno, Yahtzee, Sorry!, even Candyland) in common. H showed incredible patience when he had to remind Tom whose turn it was or when Tom argued about a roll of the die, which was often. He only chuckled when Tom got...

Photo by Giorgio Trovato on Unsplash Regular (minus a lapse of nearly a year) readers of this blog may remember that Tom received a diagnosis of young-onset Alzheimer’s disease in October of 2019 from the fourth neurologist we’d seen in three years (the final three all in 2019 since, before that, I’d believed the neurologist and neuropsychologist who told me nothing was wrong with him).  And so I went with that diagnosis—but although the primary reason I needed a diagnosis was for his application for disability coverage, I still wondered if he had frontotemporal degeneration, behavioral variant. And when we finally got to South Carolina (late November 2020) and had an appointment with a wonderful primary care physician (January 2021), she wondered the same thing.  But in reality, she did more than wonder. In what I could only see as God directing us to the right physicians, she knew more than some neurologists we’d seen about FTD. And after a review of our story/Tom’s symptoms and records, she said: “I don’t believe for a moment that he has early-onset Alzheimer’s. This is classic FTD.”  I couldn’t help but agree. Looks like a duck, walks like a duck—you know the drill.  I won’t bore you with the details of our subsequent visit to a South Carolina neurologist who didn’t seem to know a thing about FTD and questioned whether Tom even had dementia. (Seriously? This again?)  However, once I sent him the paperwork from the South Florida neurologist (mentioned here), he did sign off on the papers I needed for Tom’s disability application to move ahead. I submitted our part in April of 2020—and, two long sets of paperwork and three phone calls later (they called me to ask more questions)—he finally received the approval letter in February of 2021, two weeks before his March 23 birthday made him eligible for Social Security anyway at age 65.  And yet—of course I’m grateful. The letter acknowledged him as “fully disabled” since Nov. 30, 2018—the final date of his employment at the final church where he served. Somehow, that felt satisfying, since that position ended in a horrible way because of his poor judgment and lack of impulse control. The government letter also promised that we would receive back disability payments effective to that date.  And, because it’s the government and those wheels grind ever slowly, it took several months for that check to arrive. Yes, it’s good to have, but no, we aren’t suddenly wealthy. For one thing, he has a fairly small Social Security income. For another, I can only use it for needs directly related to his care and support.  So that’s what I do. It’s in a special account, and...

Tom and Marti, August 6, 1983 One of my favorite dementia care experts (from whom I’ve learned a lot in the past year) has a particular saying for and about those living with dementia: “I am who I was, but I’m different.” I shared this thought with a dear friend last night as I tried to explain the changes in Tom: He’s still who he was, but he’s different. And on this Valentine’s Day evening, as I sit typing away while my beloved naps on the couch, I realize the concept also holds true about loving someone living with dementia. Back in the day (we met in 1980 and married in 1983), love meant praying together morning and night. Taking time for dates. Sitting on the same side of the table at a restaurant. Kissing after we prayed before meals. Choosing that oh-so-right greeting card. Special gifts (not too often or too extravagant, but always heartfelt.) Making big decisions only as a partnership. Discussing our faith and our children and our lives. And of course, so much more.Today, love looks much simpler. We still pray together at morning and night, but sometimes his thoughts fail to connect. We still have dates, but I plan them all. We still sit on the same side of the table at a restaurant, but only if I remind him. And we still kiss after we pray before meals—but he’s starting to forget that sometimes too. I don’t receive greeting cards or gifts from him anymore unless one of our children helps him find them. I make all the decisions, big and small, and usually don’t mention them to him. He either won’t understand, won’t remember, or both. We still discuss lots of things, but the conversations are much shorter and, of necessity, simpler. Scripture says, “When I became a man, I gave up childish ways” (1 Cor. 13:11b, ESV). Yet Tom is in a stage where he’s embracing childish ways more and more. While I’m working, he’s playing games on his iPad, watching TV, or reading books (he still enjoys reading, although he loses interest easily and can rarely describe the plot). When I’m not working, he still does those things unless I force some sort of needed change. He loves routine, and moving him out of it can upset him.His tastes in food have also gone back to the basic things he loved as a child: carbs. Sweets. Fast food (please don’t send me notes about nutrition; his doctors have agreed that in his situation, comfort food is just that: a comfort. And I do give him a basic healthy diet.) Whether I take him for a simple outing like a visit...

Photo by Jack Sharp on Unsplash It took us forever to reach this point in mid-September of 2019. In fact, it took not only the visits over three years to neurologists Nos. 1, 2 and 3, but also a 50-plus page questionnaire/application, prayer and what the brain clinic in South Florida said would be a long wait. But only a few days after I submitted the paperwork via certified mail, the clinic called with a sudden cancellation. Could we come in just a few days? You know my answer. As I drove the three-plus hours from Orlando, I prayed this would be that long-awaited moment: The diagnosis that said yes, Tom has dementia. The diagnosis that said yes, it’s FTD (frontotemporal degeneration). The diagnosis that would move him closer to qualifying for disability payments. I decided to travel the distance to neurologist No. 4 because we had reached a stalemate. After two tries, our insurance wouldn’t approve the PET scan neurologist No. 3 said she needed to differentiate between FTD and early-onset Alzheimer’s disease. Already struggling to cover our bills without Tom’s income, I wasn’t about to pay the estimated $5,000 cash for the scan. So I decided to visit one more neurologist—this time, one recommended by the Association for Frontotemporal Degeneration. I hadn’t known to check their list earlier because, until neurologist No. 3, I hadn’t known about FTD. After a slight GPS-induced detour, we arrived for our longest neurology visit to date. I found the team: — Thorough: The group, which included a dietician, physical therapist, nurse practitioner and social worker, met with Tom and me individually and collectively. The exam included neuropsychological testing as well. — Knowledgeable: I knew more about FTD now than I ever had, but this team knew more. That might seem obvious, but it had not proven true with doctors prior to neurologist No. 3. —Caring: This was the first appointment where anyone expressed concern for my mental and emotional health. Just having someone express empathy for our journey meant a lot.  The team members were more empathetic than the doctor, who seemed distant, even rude, but I happily accepted knowledge over hand-patting, especially when receiving the latter from anyone came as a surprise. After all the exams and discussions, the entire team met with both of us to give us what they’d promised at the start of our appointment: A diagnosis. In brief, here’s what they said: 1. Tom definitely has dementia. He shows marked impairment in several tested areas, in memory but also in logical sequencing and other elements associated with executive function. His 2019 MRI also shows marked shrinkage from the 2017 one, particularly in the frontal area of...

Photo by Danielle Rice on Unsplash Over the past several months of my somewhat irregular “snapshots of dementia” posts, I’ve written about lots of big things. Our painful journey toward diagnosis. Job losses. Wounds to our marriage and our family. Asking Tom to stop driving. And more. But I’ve also noticed that with dementia as with many areas of life, the little things often have just as much impact as the large ones. Consider the following as not a list of my favorite things but rather of the little things that touch my heart as I watch his early-onset dementia, frontotemporal degeneration, steal so much from my husband. — Open Doors: Tom’s short-term memory has become so short that he rarely remembers to close doors or drawers. You may recall that much earlier, we had to put special hinges on our front door to close it automatically because more than once, he left it standing open when he left for work. Now I can trace his path through our home by the doors and drawers he leaves open. Praise God for a refrigerator with an alarm! — Press Pause: Sometimes I find Tom standing in our hallway, a blank look on his face. Although it passes quickly, I know this means he’s started to go somewhere or do something and forgotten what he started out to do. I can hear some of you saying, “But I do that all the time.” Yes, but probably not fifteen or more times a day—and within only a few seconds of starting the activity. — Delayed Departure: My experience as the mother of five has prepared me well for my current stage of life. As a mom, I had to plan to leave 10 or 15 minutes earlier than the actual departure time because someone wouldn’t have their shoes on or another would need to make a bathroom stop. Even if I tell Tom, “We have to leave in a few minutes,” his broken brain can’t translate that to the steps he must take to be ready to go. In fact, if I give him only two things to do, he will usually forget one of them. These days, we exit more slowly and often have to make a trip or two back inside before our true departure. — “You’re So Smart”: Tom often makes this comment multiple times a day. “You’re so smart” because I could log onto the library website. “You’re so smart” because I knew how to install an app on my phone. “You’re so smart” because I remembered what I had planned for the weekend. What touches my heart here? He never used to say, “You’re so smart” because...