Photo by Aaron Burden on Unsplash What is something that you wish you’d have known early on, or wished you’d have done or put in place?  A woman whose husband is newly diagnosed with young-onset dementia, early stage, asked this question of other spouses/caregivers, and it moved me to think—and now, to write.  That’s part of the reason behind my blog, I thought. But her question also prompted some specific responses.   1. I wish I’d known more about dementia early on so I could have pushed sooner and harder for a diagnosis. No (because some of you will think this), I’m not beating myself up. You can only know what you know. But if I had understood sooner that dementia encompasses much more than memory problems, and especially that it can have various effects even while the affected individual still performs well on standard cognitive tests, I wouldn’t have accepted the “No, he doesn’t have dementia. Come back in a year” responses that I heard for more than two years.  2. I wish I’d known that dementia would change more than Tom’s mind and memory. Even before he was diagnosed, I noticed that he had lost his sense of smell, although I didn’t know that was a common symptom of dementia (no, not just of COVID-19). I noticed some obsessive behaviors. I noticed him having increasing trouble finishing tasks he started. I noticed him withdrawing from family and failing to initiate conversations. And I noticed a whole host of other problems, many of which I’ve written about on this blog, that I never knew had a thing to do with dementia—but they did, and they do.   3. I wish I’d known the true value of narrative. Although I make my living from story, I dismissed its worth. Neurologists and others want and need objective ways to measure symptoms and determine diagnoses, and I understand that. But I also believe strongly that they must consider reports from the individual and (because many people living with dementia, or LWD, often have, as Tom did, anosognosia, a lack of awareness of their symptoms) from those closest to them. Early on, the most supportive doctors we had were the ones who listened and took notes on what I reported. The least supportive were those who dismissed my concerns because the objective testing did not at the time support our subjective experience. And yes, the objective matches the subjective now. But why did we, and why do so many others, have to wait until their loved one is midstage in the disease before medical personnel will agree that there’s a serious problem? 4. I wish I’d known how many others were trapped in the same sea of...

(Image by Mylene from Pixabay) I hope this blog gives you as many hopeful, joyful snapshots of dementia as sad ones. But as I sit, alone again, in a quiet house after Tom’s early bedtime, I’m thinking of a term my dear friend and fellow writer Tracey Pratt taught me: anticipatory grief. That’s typically a type of grief that occurs before someone dies, sometimes (as in Tracey’s case with her only daughter) years before the death occurs.  As she worked on the initial chapters of her book on the topic, Tracey taught me that anticipatory grief is a genuine and difficult emotion, and each person’s journey is “unique, normal, and significant,” as she puts it. What neither she nor I knew was that I would, all too soon, experience anticipatory grief myself.  I remember the weight of shock that slammed into me when I read that dementia often results in death. Before dementia touched our family, I saw it as something that often happened as people moved toward the end of life, but I never thought of it as a killer. Although it’s very possible that Tom could die of something else, the various types of dementia are considered terminal. The destruction they cause to brain and body can and will ultimately result in death. Learning, understanding, and living that truth over the past few years—especially while Tom remains largely unaware—has resulted in our family’s experience of anticipatory grief.  The sudden loss of a spouse hurts. I have two close friends who have had that experience in the past few years, and I’ve watched their gut-wrenching grief.   But losing a spouse bit by bit hurts too. Although our family has had some wonderful times to celebrate since Tom’s diagnosis, we’ve also had some times of deep pain. I say “we” because, as you could tell if you read our son’s recent post, Tom’s dementia hurts our entire family.  My father died more than ten years ago, but like many others who mourn the loss of a loved one, I still get hit with a wave of grief when something reminds me of him. This happens with anticipatory grief too. Some of my recent, silent grief-moments include:  —Listening to Tom ask me how to spell a simple four- or five-letter word and wondering how much longer he will be able to play the word games he still enjoys.  —Taking over one more simple task because there’s one more thing he can no longer do and wondering, What next?   —Hearing Tom get hopelessly off-track as he shares his thoughts in Sunday school and wondering how much longer he’ll enjoy the class at all.  —Seeing his delight over the smallest pleasures—a dinner he enjoyed, a...

by Andrew Pieper The Ohio State fight song rang out across the soccer field as hundreds of band members marched in unison, performing the iconic Script Ohio a mere fifteen feet in front of my dad, who sat on his walker, smiling and tapping his hand to the beat. Dementia has stolen many things from him: walking without pain, remembering what we were going to do that day despite having the conversation several times before, even constructing sentences at times now proved difficult for one of the most intelligent and humorous human beings I’ve had the privilege to know. Indeed, the list of things that are different with my dad is much longer than the things that have stayed the same over the span of the past few years.   However, one of the things on that short list is music. He hasn’t lost a beat, literally. His doctors told us music will probably be one of the things he keeps the longest, simply because it’s been such an integral part of his life for so many decades.   Upon hearing this news a year ago, I decided to buy a trumpet and take up playing again after giving it up in middle school, and we’ve been able to practice and talk music together. It’s really something to see how often on my weekly video chats with my parents, my dad is quiet and disengaged, but if I start talking about music, he instantly comes back. One time, I was describing a song, “So it goes A, A, B, C . . .” and without having any music in front of him, he corrected me right away, saying “Oh, that B is a B flat.” He just knew because it’s part of who he is, just like tapping his hand to the beat of the band. It wasn’t something conscious; it’s just part of him.   We had driven over 500 miles across five states for this: to see the pride of the Buckeyes, the Ohio State University Marching Band, practice and then perform in a primetime game on a clear Saturday evening. (My mom is the Ohio State graduate, but Dad and I have become equally big fans.) I had emailed earlier in the week with Christopher Hoch, the band director, asking him what I should do to provide my dad with the best music experience possible. He was very gracious, telling me the time and place where they practiced and what to expect on game day.   It wasn’t the easiest trip. From constantly reminding Dad what time we were doing things to changing out pain patches on his back, I devoted my full-time attention to making sure he...

Tom plays his trumpet for an Easter sunrise service, c. 2006. Three snapshots. Three brief glimpses over the past week that, like the rest of my snapshots, help show you what life is like for a family living with dementia. Although Tom is the one LWD, in some ways, all those who interact with him are LWD as well. And that’s especially true for me as his care partner (for more on this term, see here). FRIDAY AFTERNOON: GRANDPARENTS’ DAY  We took off in the middle of the day to visit our grandson’s school (he just started 4K) for Grandparents’ Day. Pre-dementia, this would have been an easy and enjoyable trip. With dementia, it was enjoyable and stressful, including:  — Leaving later than I planned because no matter how early I get Tom started, it seems he needs more time.  — Arriving to a crowded parking lot and ignoring Tom’s demand that I double-park. Because of his leg and back pain, I would like to have dropped him off at the door, but I knew he might not remember to wait for me. We had to park across a two-lane highway and walk down a small hill to the school.  — Watching Tom make a beeline for the cookie table as soon as we entered the cafeteria (first Grandparents’ Day stop). All the other grandparents were waiting in line, so it felt a little awkward, but it didn’t cause a problem.  — Because God providentially brought our grandson’s other grandparents there at the same time, we entered his classroom together. Lincoln’s delighted “Nana and Papa! Grandma and Grandpa!” made everything worthwhile for all of us.  — Following Lincoln through two crowded hallways so he could show us the STEM room. With a very active almost five-year-old and Grandpa on a walker, this was challenging enough, but it became even more so when Tom left for the restroom as soon as we arrived. Somehow, I was able to corral Tom, have Lincoln escort us, and return to the STEM room and then his classroom with no mishaps beyond my own elevated heart rate.   — Returning to the classroom to learn that his teacher and his other grandparents had been concerned about our long absence. I found myself apologizing for a situation I couldn’t have controlled, and I thought: This is who he is now. He can’t plan ahead, so I need to learn to expect the unexpected. I also need to adjust the things we do together—or ask for more help along the way.   He’s still Tom; he’s just different now. And it’s OK.  WEDNESDAY EVENING: Tom has started helping with a children’s choir at our church. This came at his initiative; he has...

(Photo by Fadi Xd on Unsplash) Note: My favorite (and only) niece was married this past weekend in a lovely ceremony that included a reading from 1 Corinthians 13. Thinking back on our wedding, where that same passage was read, moved me to write the following paraphrase specifically for caregivers of those living with dementia (“person LWD” in the paraphrase below). If I know all about dementia and can discuss my person LWD’s situation, but do not have love, I become a voice my person LWD would rather not hear.  If I’ve done all sorts of research and understand what my person LWD and I are facing, and if I have faith to believe God can change it all, but do not have love, it matters not.  And if I make all sorts of sacrifices, changing my work, adjusting my priorities, and rearranging my schedule on behalf of my person LWD, but do not have love, I haven’t helped anyone in any way. Love is patient when my person LWD forgets what I’ve said only moments before. Love is kind when my person LWD does something that will cause me extra work. Love is not jealous of the extra attention my person LWD receives from family or friends. Love does not brag about what a great job I’m doing as a caregiver; instead, love recognizes and affirms both my personal imperfections and my prayerful dependence on God.  Love does not speak to the person LWD in private in ways it would not want known in public; it does not manipulate situations toward its own selfish outcome; it stays calm when the person LWD becomes agitated; it does not keep a mental list of how much it has sacrificed and how many times it has served.   Love does not rejoice when others do things it considers wrong or inappropriate in relating to the person LWD; instead, it takes delight when more people appreciate the person LWD and want to build a relationship with that person.  Love preserves the dignity of the person LWD; it never stops believing and hoping for the best while enduring even the worst of situations.   Love never fails the person LWD. After all, any special insights and learning about dementia will one day disappear, as will the distinctions between those LWD and those not.  Like the person LWD, we have only a partial understanding of the mystery that is the mind. But one day, all of our earthly concerns will fall away, and God will restore everything lost or broken. Long ago, my person LWD set aside their childish ways. But today, more and more, they are speaking, thinking, and reasoning like a child. Today; I understand only...

(Wikimedia Commons) I remember the day when I knew I had to make a change in my parenting style. I don’t know that I heard an audible voice, but as I moved from the pantry to the table to count out the animal crackers for my children, God spoke: Stop trying to control everything.  I’m not sure what I was afraid would happen if I didn’t count out the treats—that the kids would eat too many? That we’d run out too quickly?—but that day, I stopped. I poured the animal crackers into their little bowls (or onto their little napkins; I honestly don’t remember). Maybe one bowl had more than the other. Maybe it didn’t.  But from that moment on, I stopped counting. And controlling.  God’s animal cracker instruction served me well as my children matured, because throughout that process, I could control less and less: Their rate of growth. Their emotions. Their likes and dislikes. And ultimately, their choices about their lives. The realization that I could control little and shouldn’t control much saved our entire family a lot of stress. I learned to, as a friend puts it, go with the flow of the Holy Spirit. And although our family remained imperfect, I believe we were all much healthier and happier as a result.   So tonight, when Tom once again went to bed at 9 p.m., exhausted from trying to function with huge gaps in his thinking, I found myself cleaning, just as I sometimes did when my kids were small and he was out on pastoral visits. For a busy woman, there’s something near-magical about a quiet house with no dishes in the sink, no mess on the counter, and no crumbs on the floor.  But then I realized the source of my satisfaction: control.  In our dementia journey, I have little control over lots of things. I can’t control:  — How many times Tom will interrupt my work to ask for help with his word games; tell me meandering stories about his online golf game; or have me find his glasses, coffee mug, or remote.  — How long he’ll use a walker or if that walker will someday become a wheelchair.   — If he’ll get to play with our coming grandchildren as he has with Lincoln.   — If he’ll remember how to make his coffee tomorrow (he’s forgotten a couple of times in the last few weeks).   — If he’ll make it through a full church service this weekend (we’ve had to leave early the last two Sundays). — How long he’ll be able to take his own shower and dress himself, both of which he does with increasingly less skill.   — If his words...