Mom (R) and I aboard the zodiac (small rubber boat used for off-ship excursions). I mentioned in my last post that I had the privilege of having some time away, and I’ve also written on social media about my amazing trip with my mom (her ninetieth birthday present from our family). This was a bucket-list item for her, a small-boat cruise off the Atlantic provinces of Canada, but it ended up being the trip of a lifetime for us both!   Mom and I share many of the same interests, including a continuing love of learning. This trip was perfect for us because not only did we get to see lots of amazing sites—including Sable Island, a coveted destination spot that boasts its own herd of 500-plus wild horses—but Adventure Canada brought biologists, anthropologists, naturalists, and more along to help us understand and appreciate everything we saw. Mom and I will be forever grateful for the many growth opportunities as well as the wonderful new friends we met.  During our trip, I also discovered some things about myself and my caregiving situation. Here are five things I learned during my time away.  1. I needed a break: The first few days of our trip, I slept. A lot—ten to twelve hours at night with some daytime naps as well. I was amazed at both how tired I was and how good it felt to get enough rest! It also took me those first few days to realize that I’ve been living without adequate rest. I plan to correct that because I enjoy the way it feels to have sleep, and I know it is much better for my life and my health in general.   2. Caregiving carries with it a unique level of stress. Yes, this is closely tied to point 1. But wasn’t I also a caregiver on my trip? You might think so, but my mom is amazingly sharp, with only mild, age-related cognitive decline. I did have to open the heavy doors, carry our bags, and watch out for her on stairways and hikes, but I did not have to make all the decisions, ensure her safety every time we went anywhere, and carry a private concern that she might say or do something inappropriate. Those are all part of what makes even a simple trip to the grocery store with Tom an increasing challenge.   3. I now view the world through a caregiving lens. I tried hard not to talk about Tom or caregiving all the time (although I’m not sure my mom would say I succeeded). I do know that he was often in my thoughts, and I realized for the first time that I now relate to much of...

A recent photo of Tom in his recliner, one of his birthday gifts this year. Although I shared a guest post last week, most of the snapshots of dementia so far come from me. Today, I wanted you to hear from someone else—someone who’s been present throughout our dementia journey. That person is my husband of almost 39 years, who has been living with dementia for at least the past five years and probably much longer.   As Tom’s symptoms progress, he has increasing trouble focusing on more than the simplest information. Always a creative who loved to share ideas and information, he used to say he didn’t think outside the box—he couldn’t even find it. Today, his cognitive box is small—and it shrinks a little more every day.  I conducted the following “inside edition” interview one evening this week—not the best time for him because of the sundowning I mention in this post. Despite my editorial distaste for ellipses, I’ve used them here to indicate pauses—sometimes long ones. I consider this a true snapshot of dementia: Tom’s perspective in his own words, even when his answer doesn’t match my question.  MP: So if you were going to tell someone what it’s like to have a young-onset dementia like this, what would you say?   TP: It is just deceptive. One point, you can be clear-headed. . . and putting footstep after footstep, and then other times, you. . . it’s. . . You know that I. . . I try to. . . try to keep a good. . . attitude and. . . it’s frustrating to me that like, when I have sundowner’s, because it just. . . it’s just like Let’s Make a Deal. You open it and suddenly you’re just there. You can’t change your emotions. . . Your continued encouragement and taking care of me and setting up stuff for me. . . it’s so encouraging. Sometimes you have pulled me off the cliff … and I feel encouraged and loved and cared for. . . . I never in any of my dreams ever thought that this is where I would be now (tears).      MP: What do you think is the hardest thing for you about having this disease?  TP: One thing would be. . . there are times when I can walk, and. . . I try. . . I try to keep reading because I don’t want to be locked in on word games and my golf game [both games he plays on his iPad]. . . . There’s not very many times that it happens, but sometimes you are wanting to do something or wanting to go someplace. . . and I’m trying...

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...