Guest post by Crystal Bowman A note from Marti: Tom finally received a diagnosis of dementia not long before my friend Crystal Bowman wrote a children’s picture book dealing this challenging topic. But even at this stage in our journey, I recognized When Grandma Forgets, Love Remembers as an important work. I’m so thankful for this book, which captures the beauty of the grandparent-grandchild relationship all the way through the dementia journey. I also know a precocious 4-year-old for whom it will have special meaning. I encourage you to check it out for yourself or someone else who may need this vital resource. Senior Moments As we age, we joke about being forgetful or having a senior moment. But when memory loss is the result of dementia or Alzheimer’s, it isn’t funny anymore. With the Baby Boomer population aging, dementia is on the rise. It is estimated that 1 in 10 adults over the age of 65 have some form of dementia. This debilitating disease affects not only the person, but the extended family as well. How do parents explain to their children that Grandma or Grandpa no longer knows their name? Children are sad and confused when the relationship they enjoyed is no longer there. Parents need resources to help children understand why things are different. I Love You to the Stars, When Grandma Forgets, Love Remembers (Kregel Publishing, 2020), is a picture book that enables parents to explain memory loss to a child.   The Sweet Story The story begins when Grandma and her dog, Sunny, move in with a young boy and his mother. The boy and his grandma spend hours doing puzzles, reading books, and going to the park. One day, when the boy returns home from school, Grandma is in the driveway with a police officer. She and Sunny went for a walk and got lost. Things continue to worsen when she misplaces items in the house and when she no longer engages in activities. The mother explains that Grandma’s mind is sick and now it is their turn to help her. When they can no longer care for her, she moves to a home where caregivers help with her daily needs. The boy, his mom and Sunny visit her often and enjoy spending time with her again. The message in the story is that even though memories may fade, love will always last. The Story Behind the Story A professor from Denver Seminary lost his brilliant wife to dementia in her early 60s. He wrote about his painful journey in a memoir but wanted to reach children as well. The story of his wife was the inspiration for this book. It is considered...

Photo by Justin on Unsplash Twists. Turns. Slow, then fast. Up, up, up—then plunging down. And sometimes, what seems like a complete reversal. That describes not only a roller coaster ride but our journey to and through diagnoses (intentional plural).  In this post from a few weeks ago, I shared how after a long wait, Tom was finally approved for disability payments through the Social Security Administration. I no longer had to jump through hoop after hoop to get doctors to agree that something was wrong with him and/or agree on a diagnosis, which had previously wavered between frontotemporal degeneration, behavioral variant, and young-onset Alzheimer’s Disease (“young” onset means symptoms develop before age 65, and Tom had symptoms well before age 60, which is when I finally convinced him to see a neurologist).   As it turns out, we weren’t done with the diagnosis process after all. As I also mentioned in that post, we had one unsatisfactory visit to a neurologist in our new home state of South Carolina (where we moved in late 2019; we had seen a total of four neurologists in Florida). Once the perceived urgency of diagnosis was over, I didn’t want to go back to that doctor. I took the advice of a local friend and called the Brain Health Center at Emory University in Atlanta. We had tried to get Tom accepted there once before, but at the time, they wouldn’t take patients who lived more than an hour from the hospital (we live two hours away).  Both the pandemic and the fact that Tom now qualified for Medicare helped us. When I called in the spring of 2021, the screener said she would call me back “in a day or two” if he qualified. I got a call back that same afternoon.   A few weeks later, we met with Tom’s new neurologist for the first time—via Zoom as we sat parked outside a restaurant in Georgia (we had to be physically in the state because of medical licensing requirements). They had no in-person appointments, but I filled out multiple questionnaires ahead of time. The neurologist listened to both of us (although Tom stopped participating early on), asked insightful questions, and wanted to hear various details of Tom’s health. I mentioned that although many of his behaviors/symptoms were consistent with FTD, his early memory problems seemed to point more toward Alzheimer’s, and he had received both diagnoses.  To firm up the diagnosis, this neurologist recommended a lumbar puncture and an MRI (his third since 2017). We had declined a LP a few years prior, concerned about putting Tom through a stressful procedure, but this time, I said yes. Since I had gone to the trouble...

Photo by Xianyu hao, Unsplash I am a person of tears. I cry when I’m sad. I cry when I’m happy. I cry when I worship. I cry—you get the picture. My children remember me not as the mom who screamed when they were disobedient but as the mom who (you guessed it) cried. I’ve written before about these tears here and how, in Tom’s (more and more rare) moments of awareness of his condition, sometimes, we cry.  As far as I can tell, I feel things more deeply than many people. I believe this quality makes me a better intercessor and a better writer, but it also means that, as the wife of a man living with dementia, I cry.  Why do I cry? Not because of the pain of the past, the years when doctors kept saying Tom was fine but his behavior showed us he wasn’t.   Not because of the responsibility. Yes, it still feels like a weight—being in charge of everything about our lives together, from small to big decisions, tasks, schedules, and everything in between—but God has given me what I need, and I’m consistently amazed at His provision.  Not because of the diagnosis. Knowing Tom has what I consider a terrible disease makes me sad, but we waited so long to receive medical affirmation of our suspicions that when it came, I felt more relief than sadness.  Not because of lost jobs. I did cry—a lot—when Tom had to leave his final worship pastor position. We loved our church and the people there. But Tom was in such a bad place emotionally/spiritually/and of course cognitively at that time that I knew something had to shift. So although the tears came, I also realized it was time, probably past time, for him to go.  So why do I cry?  Because of our children. Every mother will tell you she’d rather hurt a thousand times herself than see her child hurt once. All our children are grown now, but their father’s disease still wounds them. We all hate the way dementia is stealing him from us. And I know it gives them additional concerns for the future, all of which I wish I could remove but none of which I can.  Because of our grandson. As I wrote about here, Lincoln and his love for Grandpa have taught me much about genuine love. Lincoln doesn’t mind that Grandpa gets mixed up easily, makes awkward comments, or doesn’t remember what someone told him only a few minutes earlier. But knowing that this little boy will continue to grow, change, and progress while Grandpa grows, changes, and regresses? That makes my heart hurt and my tears flow....

Photo by TheDigitalArtist on Pixabay That brief phrase might be my best answer to the question I hear most often about my husband: How’s he doing? I doubt those who ask have time or desire to hear the long version of my response. So “it’s complicated” works well. Before I had the privilege of carrying a child, I thought pregnancy meant you gained weight, your abdomen grew larger, and in nine months, you had a baby. I had no idea that so many areas of my body, from hair to fingernails to feet, would change as I journeyed through those months. That’s how dementia is. Before it struck our family, I pictured it as a primarily a memory problem. For Tom (but not for all people living with dementia) memory loss plays a big part, but dementia affects so much more than memory. The best way I can think of to explain “it’s complicated” is to compare how he was two years ago (just after we moved to our home in South Carolina) to now in several key areas. 2020 SPEECH: Has become increasingly halting. VISION: Poor depth perception. MEMORY: Remembers many people but not dates and events; needs daily reminders to take medication. DIET: Normal, some food and drink obsessions. Has lost his sense of smell, which has begun to affect his sense of taste; likes and dislikes are changing. HOUSEHOLD TASKS: Little initiative to help on his own but vacuums, mops with reminders, and does occasional other chores. FINANCES: Can no longer manage bank accounts or personal finances; still has a debit card and one credit card that I monitor. EMPLOYMENT: Retired after losing three successive jobs in late 2018/early 2019, all dementia-related but has no benefits. DRIVING: Our family asked him to give up driving in April 2019 after minor accidents plus observation of his driving; still wants to transfer his Florida driver’s license to South Carolina “just in case.” PERSONAL CARE: Normal except that he stopped going to the dentist a few years ago and needs treatment. BALANCE: Diagnosed with a balance problem in late 2019 and had a few weeks of physical therapy. SWALLOWING: No known issues; coughs (a lot) and chokes (sometimes). SLEEP: Normal; was acting out his dreams and had restless nights until one neurologist prescribed an antidepressant. INTERESTS: Decreasing; still engages with family with encouragement, enjoys church, music, movies, TV, reading, golf, and has obsession with an online golf game. Will often choose this game over engaging with family. A former professional trumpet player, he has not practiced consistently since May 2017. 2022 SPEECH: Much slower with frequent pauses, often gives up. VISION: Narrowing field, misses many objects. MEMORY: Remembers people...

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...