Snapshots of Dementia: Third Time’s the Charm
Photo by Steve Johnson on Unsplash Before I started these “Snapshots of Dementia” blog posts, I asked my Facebook friends about the idea. The volume and intensity of responses amazed me. I remember thinking at the time, OK, people, I hope all of you who said yes will read it. And you have. I’ve had more interest in these dementia posts than anything else I’ve written here (I posted regularly for a few years before Tom’s health began to go downhill and I took a full-time job.) So as a preface to today’s post: THANK YOU! I am grateful my words make a difference. I believe our story matters, or I wouldn’t share it. Ultimately, I pray it makes enough of a difference that others won’t have to wait so long for diagnosis or disability or even just plain old understanding (reference: man in the red truck). But in the meantime, I am living this journey as well as writing it. And this week, that’s been a challenge. For now, let’s just say the government and the medical profession are working hard to make sure I have more to write about. At the point where I last shared about our progress, we had finally visited Neurologist No. 2, with fairly unsatisfactory results. I was on my way to making an appointment with Neurologist No. 3: In the meantime, to review the medical part of our journey so far: 1. Neurologist No. 1 (two visits, a year-plus apart): “He’s fine, just short-term memory problems, no worse than my 80-year-old Alzheimer’s patients.” 2. Neuropsychologist (one visit for testing, one for feedback): “He’s fine, just ADHD and shame from poor behavioral choices. He can do better.” 3. Neurologist No. 2 (two visits a few weeks apart): “He’s sort of fine. He has depression. I need to watch him closely.” (No, thank you). You may recall I had already enlisted the help of a prayer team. One of those prayer partners, a dear and longtime friend, is also a registered nurse whose husband has Parkinson’s Disease. As she and I talked, I expressed my concern that Tom might have Dementia With Lewy Bodies (DLB), a Parkinson’s related disease (it has gained recent notoriety because comedian Robin Williams apparently had this diagnosis). He had several Parkinson’s-type symptoms (I’ve written about the tremors, and he also drags his feet when he walks and sometimes stumbles.) From what I had read about DLB, I knew it might be a match. My wonderful friend urged me to seek (and even helped me seek) the care of a neurologist who was also a movement specialist. I called and explained our situation and secured an appointment. They needed Tom’s records from neurologists No. 1 and 2, so I called and requested them. No problem, right? By now, you know the answer: Wrong. Neurologist No. 1 sent the records. Neurologist No. 2 was not nearly so accommodating. No, they could not send the records electronically. Yes, we could get them if we insisted, but they didn’t recommend it. And yes, we could only get them if we went into the office and paid a fee. Because I had Tom make the request, it took three phone calls to find out this information. And of course, we paid the fee (who...
read moreSnapshots of Dementia: To the Man in the Red Pickup
Dear Man in the Red Pickup, Photo by Neonbrand on Unsplash I know you were angry yesterday morning as you hurried to work. Maybe you were late, and the older couple walking along your route didn’t help. I too have experienced frustration when a biker or pedestrian slowed my progress. It’s no fun, especially when you need to reach your destination on time. And of course, it didn’t help that this road had no sidewalks. What was this couple doing out there anyway? Because I work in a world of words, I often see information as the answer to everything. Still, I realize you may not be interested in information. But since I remained silent while you screamed and swore at my husband, I thought I’d offer more of the story—albeit a little late. You see, there’s at least one thing you couldn’t have known about him: He has an early-onset dementia called FTD (frontotemporal degeneration) that prevents him from making wise, quick decisions. So when you tried to teach him a lesson by staying firmly in your lane yesterday, and he didn’t move, he wasn’t being stubborn—at least, not in the way you or I might be. He simply isn’t able to process a concept such as “A truck is coming. It may not stop or move over. I should get out of the way” fast enough to do what you expected. I realize you saw his behavior as arrogant and rude. But this is far from the truth. Until about two years ago, he was a pastor who loved (and still loves) God and people. Even at his best, he would have thought you should respect him as a pedestrian, but I doubt he would have challenged you by remaining in your lane. Now, he just can’t think fast enough to move over, even when I tell him to (which I did as you approached us). So even though you told him, “Next time, I won’t stop,” I’m not sure he has the mental ability to change his behavior. My husband’s dementia also causes obsessions. One of his current ones is walking, and so the two of us walk at least 3.5 miles every morning and nearly that far every evening when he’s not too tired (his dementia also causes exhaustion). Several months ago, our family made the decision not to let him walk alone anymore. Although he knows about the COVID-19 pandemic and social distancing, he can’t follow the steps needed to carry out those restrictions on his own. His lack of logic also means that more than once, I’ve had to pull him back from crossing a street as a car headed right toward him. Why do we walk on that road where you met us? As you know, few streets in our area have sidewalks, and that route happens to be my husband’s favorite. We go early in the morning (we leave at 6:30 or 6:45 a.m.) when traffic is light. Yes, we could walk at the local rec center, but until now, I’ve felt safe on the roads. I had already told him that when school started back, we might have to readjust our route. He has lost so many freedoms (he cannot work or drive anymore) that I didn’t want to take...
read moreSnapshots of Dementia: The Great Depression (or not)
Photo by Stefano Pollio on Unsplash If your snapshots are anything like mine, they fill a shoebox (OK, mine fill an entire trunk) and most are in random order. I have long-ago dreams of putting them in beautiful, chronological albums (I’m sure God has a special place in heaven for those who have achieved this wondrous feat), but so far, it hasn’t happened. I don’t think it will happen with these snapshots either. So, although I’ve written somewhat chronologically, you may have noticed I’ve also skipped back, forth and around as I’ve focused my lens on different parts of our journey and of Tom’s disease. And I imagine that, even if you’ve never been exposed to dementia before, you’ve seen that this disease is exactly like that. Messy. Disorganized. Uncomfortable. I’ll move us forward a bit on our timeline to our visits with a second neurologist. We’re all the way up to early 2019 now, and many things have changed for Tom. Just the year before, his first neurologist told us (for the second time) that things were basically fine, that he just had some short-term memory loss and (for the first and only time) that he was “better than the 80-year-old Alzheimer’s patients I see.” A neuropsychologist had also done extensive testing (which I eventually found out our insurance did not cover, although no one told me that at the time; I mention this so anyone reading will check first and not have to shell out the nearly $1800 I did almost a year later). This doctor concluded that Tom was very intelligent, probably had adult ADHD (a diagnosis he had already received) and was dealing with shame as the result of some of his extremely poor and uncharacteristic behavioral choices over the past few years. No one told us about frontotemporal degeneration (FTD), behavioral type. No one mentioned that dementia could not only cause memory loss and confused thinking but that it could also cause personality changes of the extreme type we saw in Tom. No one mentioned that perhaps he didn’t have a moral problem but a mental one. That’s why I have such a deep commitment to tell our story. I did suspect a problem; I just didn’t realize so much of what I was seeing in my husband was tied to what we now know to be FTD. But I digress. Finally, we visited a second neurologist. This one came recommended from more than one friend. I was confident that this time, we would get some answers. So much had changed in Tom’s life that I felt sure the doctor would see the problems right away. We had (well, I had, because Tom could no longer fill out anything so complicated) lots of paperwork to fill out before this visit, but I didn’t mind. I wanted the doctor to have information. I even added a copy of a letter from our former pastor about the changes he had seen in Tom’s work ability, moving from “highly competent” to much less than that over the more than five-year period Tom had served under him. At this visit, the neurologist and her staff asked lots of questions. In fact, we spoke more with the staff than we did with the doctor. She examined Tom briefly and...
read moreSnapshots of Dementia: Letter to My Sweetheart
Photo by Aaron Burden on Unsplash You don’t understand How to play a game Or pay a bill Or pull a name From your contacts list, which you cannot find For a villain lurks Inside your mind. You always said We’d be the two Who’d stay in love Our whole lives through And indeed we have—yet today, somehow You’re a little boy I’m the parent now. My shattered heart Breaks more each day As you, my darling, Fade away. Like a photograph in too-bright sun You sit tired, confused The thief has won. But no! The Father Showers grace. Takes every tear And, in its place, Brings relief and comfort, sure release From the chains that bind Grants perfect peace. My deep desire To serve my King I wrap in this, My offering. To bless in ways, be they large or small, When no one’s around To see at all. To give to you As I’ve received, Bring joy to you When I am grieved. To put you first In every way. To grant each wish, Take time to play. Speak words of love, Do each hard task. Still hold your hand When you cannot ask. One day we’ll end This earth-soaked race One day we’ll see With unveiled face One day your horn Again will sound One day we’ll kneel On holy ground. Until then, dear, My joy will be To serve and love you Faithfully. As I wrote this, I was thinking of course of my husband, Tom, but I was also remembering my dad and my mother’s loving care for him through his many years as a Type 2 diabetic and then as a cancer patient. These words are for Tom, but they’re also in honor of Mom and all those who offer loving care for others. Your story matters because you do. Feel free to share in the comments...
read moreSnapshots of Dementia: It Takes a Team
Tom and I with our “original 5.” Photo Credit: Jake Burton After my Christmas revelation via our former pastor, I did something I’ll never regret. First, I wrote my mother and told her the Reader’s Digest version of our story. Although we spoke every few days, I had not yet shared my concerns for Tom’s health. I knew it was time—past time. And in my typical style, I found it easier to write than speak (especially since I knew this story would come with tears). After I wrote the letter, I realized something else: It summed up a huge area of our lives that I had kept hidden from almost everyone. I was already on the hunt for a new neurologist, but we needed much more than that. We needed prayer. I’ve shared plenty of the mistakes I made on our journey, but at this point, God moved me to do something I’ve never regretted. I had an email list of friends who had supported our family in prayer on various mission trips through the years. I quickly pulled names and addresses together for a new “Pieper Prayer Team,” added a note at the top and forwarded my letter to Mom to my praying friends. I expected prayer. But I didn’t expect the peace and power I experienced as responses came flooding in and prayers went flying up. I had fought to protect Tom for so long. Now, I told myself, the support mattered much more than any remaining fear of what people would think. I also received wise counsel from various friends who had either a medical background or caregiving experience. Almost without my realizing it, the Lord had surrounded me, physically and virtually, with a wonderful team. But Tom and I already had a smaller, more intimate team that had loved and supported us for years. Our five adult children (and two children-in-love) listened, loved and helped—each in his or her own way. Even as they grieved the reality of what was happening to their dad, they also urged me to keep seeking answers. I also consulted with them all about a big change I planned to make. I’d decided to sell our home and move to South Carolina, close to our oldest daughter and her family and also to our second daughter, who lives just two hours away. I knew we could support each other no matter what might come our way. Once again, what seemed like several insurmountable tasks lay before me. We still needed a diagnosis for Tom. My salary and freelance work could cover our expenses—barely. Our home would need some repairs and upgrading before we could put it on the market. And then there was the matter of a new job for me, since my company in Florida didn’t allow remote work. “Make a list of what you need to do for the house and share it with us,” our oldest daughter urged. She and her husband had just moved, so she knew what I was facing. “Then we can help you add to it.” My son, visiting for the holidays, did a walk-through with me to come up with a list. And he said something I never expected. “I’ll stay and help you, Mom. I can work during the day and...
read moreWelcome
I've asked God to use my writing and speaking to count for eternity. I'm passionate about relationships and creativity.
