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Snapshots of Dementia: The Great Depression (or not)

Posted by on August 4, 2020 in Dementia | 6 comments

Snapshots 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...

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Snapshots of Dementia: Letter to My Sweetheart

Posted by on July 24, 2020 in Dementia | 48 comments

Snapshots 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...

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Snapshots of Dementia: It Takes a Team

Posted by on July 22, 2020 in Dementia | 4 comments

Snapshots 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...

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Snapshots of Dementia: Whole Lotta Shakin’ Going On

Posted by on July 17, 2020 in Dementia | 4 comments

Snapshots of Dementia: Whole Lotta Shakin’ Going On

“Whatever you do, if they take you out to lunch, don’t hold your drink like that.” Photo by Nira Giri on Unsplash Two close friends gave Tom this advice as they sat at one of our favorite Charleston restaurants (we lived on one of Charleston’s barrier islands before we moved to Florida). The year was 2007, and these two prominent businessmen were giving him tips as he prepared to interview for a ministry job in the Orlando area. But what difference would the way he held his drink make? When he told me about their comment, I knew exactly what they meant. Tom has what doctors call an “essential tremor” in his right hand. I don’t remember that he had it when we first met more than 40 years ago, but I do know he’s had it for a long time. This genetic condition causes involuntary shaking and can occur almost anywhere in the body, but most often in the hands, especially when performing activities such as tying shoes or drinking from a glass. The Mayo Clinic says it “is usually not a dangerous condition, but it typically worsens over time and can be severe in some people.” Tom’s sweet tea, in the grand old Southern tradition, came in a heavy glass. His friends noticed his hand shaking and didn’t want it to signal any sort of problem. I’m not sure if he remembered not to hold a glass during the interview process, but he did get the job, and our family moved to Florida that July. I bring up the tremor because it was yet another symptom I questioned when I became concerned about other issues and began our quest for a diagnosis. Tom’s first neurologist was the one who told me it was called an essential tremor, and that it was “nothing to be concerned about; lots of people have them.” At his casual words, I heaved an inner sigh. I had plenty of other thins to be concerned about. But of course back then, I didn’t realize how many. Only a few months after that visit, as I sat in church with Tom one summer Sunday, he put his arm around me, and I noticed it was shaking violently. His tremor, I thought. It seems so much worse. But then I realized something that concerned me even more: It was the wrong arm. I didn’t realize it then, but Tom was experiencing great stress. Our pastor told me during my lifechanging pre-Christmas visit that no matter what they discussed before the service or how similar the order of worship was each week, one of the many things Tom couldn’t seem to remember was when he should return to the platform to lead the closing hymn. He watched intently every Sunday, fearful of missing his cue. I’m sure he experienced other kinds of stress, but that Sunday, it all found expression in his trembling left arm. After that, I started paying more attention to his tremor. It had definitely gotten worse and had moved into both hands and arms, not just one. He laughed it off as “something I’ve always had; I don’t even know when it started,” but I viewed it as one more sign and symptom: Something was wrong with my husband. I shared this...

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Snapshots of Dementia: The Greatest Gift

Posted by on July 14, 2020 in Dementia | 20 comments

Snapshots of Dementia: The Greatest Gift

It began with a gift. A simple Christmas gift. But it turned into so much more. Kringler (Dansk Kringle) Every year, our family carries out a tradition my mother began. Although we don’t have a Danish background, we bake a filled Danish coffeecake called Kringler at Christmas. My mother always made several to share with neighbors, co-workers and special friends, and I do the same. Some year, just like Mom, I’ve made more than 20 of these delectable treats. This December, my list was small. Our life seemed that way too. The year 2018 had been another year of challenge. Tom and I continued our marriage counseling. Our counselors had stopped it that spring for several months because of his lack of progress. They wanted to see what the neurologist and neuropsychologist said, but once those doctors cleared him, we moved forward once again. But 2018 was also the year I turned 60, and that July, my children surprised me with a family party and photos. I remember our oldest daughter saying, “Mom. You have to find a new neurologist. Dad dropped the ball multiple times when we were putting this together.” “But we did see another doctor,” I reminded her, referring to the many hours of testing with the neuropsychologist. I already felt overwhelmed with work and ministry and marriage. How could I even think about finding a new doctor? But all too soon, life forced me to think about just that. Because in late November, Tom acted on another “terrible, horrible, no-good, very bad” idea and lost a job he loved. A job he’d held for more than five years. Just a few weeks later, he made another bad decision in a temporary delivery position he’d found. Another job loss. What was happening? But Christmas is still the celebration of our Savior’s birth, and I still had so much to thank Him for, including the fact that I had a job and could work. That Christmas, I stopped by our former pastor’s house to bring him and his wife a Kringler. They had retired from the church in June, and although they knew about what had happened, I hadn’t spoken with them at all. In fact, I had barely spoken to anyone about it because I knew I would fall apart. My work schedule meant I finally showed up at my friends’ house with their gift on Dec. 24. They graciously invited me in, and when our former pastor asked me about what had happened, my tears flowed. I still look back on that day as a turning point. Not because I was finally sharing our struggles, as huge as that was, but because before I got very far into our story, this wise man looked over his glasses at me and spoke these plain and powerful words. “Marti. There has to be a neurological explanation for this. You’ve got to find a new doctor.” All these months, I had hesitated to speak with him—and almost anyone—about Tom’s problems. How many times had I heard, in one way or another, “He’s fine”? But our former pastor started telling me about the many changes he had observed in Tom. And his list, although work-related, was almost identical to mine: The incomplete tasks. The withdrawal from relationships. The forgotten...

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