Snapshots of Dementia: Four Things I Learned in My Crash Course
Yours truly with our oldest daughter, one day post-crash Crash. That’s what happened to me in mid-May last year. No, it wasn’t a car accident. We were visiting our local daughter and her family, who all had brand-new bikes. Our then three-year-old grandson was out riding his bike along with his 15-year-old foster brother (if you missed H’s story, find it here). “Mom, you can take my bike if you want and ride with them,” my daughter offered. Never mind that I hadn’t been on a bike for years. I used to ride a unicycle, so a bike should be no problem, right? Never mind that I need to stay well for my husband’s sake. Bike riding helps keep people healthy, right? Never mind any of the second thoughts I’ve had since that eventful day. I dutifully donned my daughter’s helmet (for which I am still thanking God) and rode down their long driveway behind the boys. I won’t bore you with all of the details, but after a few successful rides up, back, and around the drive and cul-de-sac, I hit some gravel. The bike flew one way, and I flew the other: down. Cut to the emergency room, one stitch in my left eyelid, bandages over deep wounds in my elbow, bruises and swelling on my face, and a broken left humerus (upper arm bone). My daughter, who went with me, brought me home around midnight. Under the influence of pain meds, I lost consciousness at home early the next morning, hitting my forehead on a door and wedging myself inside the bathroom in the process. My new motto: Go big or go—back to the ER. Another visit there for my daughter and me, but thankfully no concussion or other major injuries (the giant hematoma waited a few days to pop up on my forehead). This began a long saga of doctor’s visits, physical therapy, and ultimately a reverse shoulder replacement and more physical therapy. Almost a year later, my arm/shoulder still isn’t 100 percent, but it’s much better. Tom didn’t crash. He didn’t even—thankfully—see the crash take place. But through this time, I learned a few lessons to add to my care partner knowledge, and I want to share them now. 1) “Big feelings” happen. This is true not just with our four-year-old grandson but for those living with dementia too. As soon as the ambulance left, Tom paced around our daughter’s backyard for an hour or so, crying. Seeing me leave in the ambulance upset him for days. His brain can’t process change well, and his amygdala, the part of the brain that handles emotions, was working overtime. Anyone would feel upset if their spouse had such a bad accident. For someone living with dementia, it’s terrifying. 2) I can’t do this alone. I am Tom’s primary care partner, which means I take care of his daily needs. He can still do a lot for himself, but I manage his life, make sure he eats, sleeps, showers, and so on, because without me, he might not do any of those things and wouldn’t do most of them well. I knew a day would come when I needed more than occasional help. I never realized it would come so soon. 3) Family matters. I don’t...
read moreSnapshots of Dementia: People Who Need People
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 early on when she learned of Tom’s diagnosis. She spoke with me—and then with him. Since then, she has called him periodically just to chat. I’m sure his conversation wanders, but he is at his best when he talks about old times. I so appreciate her willingness to fit Tom into her busy life. — Old friends from the churches we’ve served (in Texas, New Mexico, California, South Carolina, Florida) who stay in touch through various means, including this blog. Just knowing we have people who care about us—no matter what—means more than I can express. — New friends from our...
read moreSnapshots of Dementia: A Tale of Two Blessings
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 aggravated about losing, which was even more often. I had to step in once in a while with a word of correction—always for Tom, never for H. When Tom lost patience with board games (usually after an hour or two), they watched movies or old TV shows. Once again, H demonstrated amazing patience as Tom rolled out many of his old favorites, including those H had seen before. They laughed at the same lines, and if H failed to do so, Tom made sure he knew why he should have. And once again, H never complained. I soon realized this...
read moreSnapshots of Dementia: Not-So-Easy Money
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 since he can’t manage his finances, the government (after another application and brief wait) named me his representative payee, which means I receive the money and manage it for him. I use it only for expenses directly related to his care, primarily medical and dental needs so far. For example, he had let his teeth go terribly in the years prior to diagnosis, and once the government check came, we could now afford the work he needed to get his mouth back into shape. How all this impacts diagnosis is yet another story. But since (again, if you’re a regular...
read moreSnapshots of Dementia: Love, Actually
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 to Wendy’s or spend time with him watching one of his favorite shows, he will often tell me it’s “the best day ever.” I agree, smiling. I have a lot of those days now—smiling on the outside, heart breaking on the inside. Because the man I have loved and built a life with for so many years is fading away in front of me: repeating his favorite stories to anyone who will listen, forgetting to turn off almost every light he turns on or close almost any door he’s opened. Yes, his short-term memory is that short. And no, none...
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I've asked God to use my writing and speaking to count for eternity. I'm passionate about relationships and creativity.
