Geralt on Pixabay Don’t have unrealistic expectations of your spouse. I had that advice drilled into me even before my marriage. I learned not to expect Tom, who had been raised in a far different family setting from mine, to do, say, or think things exactly as I did. I learned not to expect Tom, who was a pastor and spiritual leader, to be the perfect husband and father any more than I could be the perfect wife. And I learned that neither of us should expect the other to change. Instead, Tom and I learned, albeit slowly and sometimes painfully, to talk and pray through our differences. Sometimes he changed. Sometimes I changed. More often than not, we both did.  Having an increasingly loose hold on expectations has helped me survive without too many scars before and since our living-with-dementia journey. I say “increasingly loose” because as Tom’s dementia changes him, I must change my expectations too.   I wrote about how he stopped taking care of our lawn a few years before we knew he was LWD. Once I realized he was not going to take care of it (although I had no idea dementia was a factor), I stopped expecting him to do so.   But when we packed up our Florida home, downsized, and moved to South Carolina in November nearly four years ago, it bothered me somewhat that Tom didn’t help at all. He didn’t sort a single item or pack a single box. In fact, his attempt to box up the theology books he sold to an online bookstore became an organizational disaster that brought me hours of extra work. That incident helped lower my expectations. I understood: Tom could no longer pack. And I didn’t want him to. At that time, since we didn’t have any sort of dementia diagnosis for Tom, I was still operating in a not-so-magical neverland, not knowing what he could and couldn’t do or what I should and shouldn’t expect. After he lost three jobs in a row, I decided he could no longer work. I no longer expected him to do so. After he had some near-misses with the car, our family decided he could no longer drive. We no longer expected him to do so. And after both of these changes and more, I decided to move closer to family—whether or not Tom’s doctors ever agreed he had a problem. I no longer expected him to have the wisdom to make such a big decision in a wise, caring way.  All of these decisions shaped our expectations of Tom. But none of us had a real idea how much the expectations would continue to shift as we went along. Here...

(L-R) Sheryl, Marti, Tom, and David in our first meeting on the ship Our Great Alaskan Adventure taught us—in more ways than one—how thankful we are that “I’ve Got a Friend Like You.”  We knew we’d be traveling with Barbara and Hardy (see Part 1 of “The Great Alaskan Adventure” if you missed it.) But we didn’t know that we’d also be traveling with friends we have known for more than thirty years. David and Sheryl Neal were members of the second church Tom pastored, located in Southern California. Their three children are close to the same ages as our oldest three children, and when our fourth child and third daughter decided to come more than five weeks early, the Neals got the early-morning phone call and child-sitting duties.  David and Sheryl have remained our friends through the many years and moves. Whenever we went back to the area, we made sure to visit them, even staying in their home for a few days on our last trip there. Sheryl and I have stayed in touch via emails, phone calls, and texts about joys, sorrows, and prayer needs along the way.  The day before we left for Seattle, where we would embark on our cruise, one of our foster grandchildren (who happens to live with that fourth child of ours) required emergency surgery. Of course, I texted Sheryl to pray. In the process, I mentioned that I was out running final errands for our cruise, which apparently I’d forgotten to tell her about.  “Wait, we leave for an Alaskan cruise Friday,” she texted back.   I didn’t even consider the possibility that it might be the same cruise. I knew other couples who had gone to Alaska this summer, and I also knew multiple cruise lines cover that route. Still, Sheryl asked me to share the details (see text exchange below). I didn’t actually faint, but I’m sure I came close to it. And I’m thankful we have the photos to prove that we ended up on the same ship. For them, this was a Celiac Cruise; Sheryl has navigated her way through celiac disease for some time, and the wonderful invention of unique cruise, complete with a private dining room and chef, has made travel possible for her once again.  Will Tom remember us?  the Neals wondered ahead of time. When Sheryl mentioned this to me, I assured her he would. He might not remember the names of the couples he sees in Sunday school every week, but he would remember these dear and longtime friends. I had no doubt.  We all boarded the ship Saturday but couldn’t connect until Sunday. I had told Tom before we left that David and...

(L-R) Mary Beth Chapman, Hardy Lee, Barbara Winkler, Tom, Marti, Steven Curtis Chapman Our family loves music. Not just because Tom worked as a professional musician and worship pastor before he was living with dementia, although that has a lot to do with it. We can all name songs that meant a lot to us at various points in our family’s life—many of them from the contemporary Christian genre.  One of the artists who has had a great impact on our lives is Steven Curtis Chapman, who also happens to be the most-awarded Christian music artist of all time. Tom and I have laughed, cried, and sung along with his music for much of our marriage; he released his first album the year our first two daughters were born, and his “Cinderella” played at the daddy-daughter dance for a family wedding.  Just as his songs have accompanied our lives, they also became the soundtrack for our trip. The second listed below, which also features SCC, is by his longtime friend Geoff Moore and is also a family favorite. Enjoy and excuse the hairstyles! ‘The Great Adventure’ Because I knew Tom and I would celebrate our fortieth anniversary this summer, when I saw a magazine ad last fall for a week-long “Great Alaskan Adventure” cruise with Stephen Curtis and Mary Beth Chapman and friends (including Geoff Moore), an idea sparked. Could we?  “I’ve always wanted to go to Alaska!” Tom said when I showed him the ad. The fact that he remembered the idea and mentioned it several days in a row also spurred me onward.  Had I seen the ad a month or two earlier, I might not have had the courage to do anything about it. But our son’s own great adventure in taking his dad to an Ohio State football game last fall, along with our four daughters’ enthusiastic approval of the idea, gave me the courage to plan the trip. Whale watching in Juneau, Alaska For one full week in July, we had the incredible gifts of a mini-Christian conference with teaching from Scotty Smith, founding pastor of Christ Church, Franklin, Tennessee, and music from SCC and family/friends; the amenities of a luxury cruise ship; and the raw beauty of Alaska—including whale watching, a narrow-gauge railway ride up the White Pass and Yukon Route from Skagway, and gorgeous views of the Endicott Arm and Dawes Glacier—plus a guided bus tour of beautiful Victoria, British Columbia, complete with (for all my Canadian friends) a visit to Timmie’s!  But wait. There’s more.   ‘I’ve Got a Friend Like You’ We experienced many blessings during the trip, but the greatest came because of two sets of friends. One is a couple we’ve only known for a...

(Hans Peter Gauster, Unsplash) Life is hard, and it might not get easier.”  Every one of our children knows this phrase well. While growing up, they often heard it from their dad (and eventually from each other as well as from me). It entered our lives as a line in an Amy Grant song, “We Believe in God.”  Tom is living this reality now. Life with dementia is increasingly hard, especially in this year that has seen a steeper decline in his cognition and abilities.  “What’s the hardest thing about living with dementia?” I asked him this morning.  He had just misplaced his coffee mug and needed my help to find it, so although he hesitated, he had an answer. “Well, two things. First, I can’t remember where stuff is.”  “Second …,” He gave one of his now-characteristic lengthy pauses, and after a couple of minutes had passed, I reminded him of the question.   “Well, second (another long pause) … I’m sorry, I don’t remember.”  “That’s OK, baby, I was just wondering what you thought. Is there something that really bothers you about having dementia?”  “(Long pause) “If I think of something later, I’ll let you know.”  I recently had to fill out a survey for an upcoming doctor’s appointment Tom has with the Brain Clinic at Emory University. It had to do with activities of daily living, a term health care professionals used to describe an individual’s daily self-care activities. I’ve filled out this survey before (Tom hasn’t been able to answer any medical questions on his own since 2018), but this time, I noticed that in more categories than ever before, I answered either “does not perform” or “cannot perform without help.”   The ADL questions referred to such activities as fixing meals, driving a car, and keeping track of medication. Tom can’t do any of those activities, and for most of the remaining ones on the list, he requires a lot of assistance.   What the questionnaire doesn’t reveal is how much assistance he needs. Although pet care wasn’t on the list, he needs more and more help in caring for his beloved box turtles. Last year, he could go out to our backyard pen and feed them on his own. This year, I go with him. He might forget that he’s not supposed to climb into the pen, which poses a fall risk. He might forget why he’s out there, and I remind him to give the turtles their food, which I’ve helped prepare. And of course without my reminders, he would forget that he needed to feed the turtles at all.  Other ways his life has become harder as his brain change becomes more marked include: ...

Photo by Andres Siimon on Unsplash I’ve had it!” my friend said. “I’m so tired of doing everything around here! She used to care so much about having a nice home. Now all she does is sit in front of the TV.”  His words about his wife, who is living with dementia, reminded me of a time in our lives in 2015—more than four years before Tom was diagnosed. He seemed more tired every night than he had in the past, and I wondered if he was aging prematurely or perhaps just differently than I.   And I really wondered about his obsession with simple computer games. In the evenings or on weekends, he would sit in front of his laptop for hours, not watching TV or engaging with me, just playing the same game over and over.    In the meantime, I was either doing housework or working on a freelance assignment or walking the dog or. . . you get the picture. But what I didn’t do was lawn care.  Our house in Florida didn’t have much of a yard; a pool and lanai (screened porch) took up most of the backyard. Mowing the grass didn’t take much time, but throughout our marriage, Tom had never wanted me to take on that chore anyway. And since I’m allergic to almost every kind of grass, I never minded.  Over the past year or so, he had done less and less with our yard. But suddenly, he wasn’t taking care of the lawn at all. We had no children left at home, so we couldn’t assign this chore to one of them. The grass that had almost taken over some of the beds around the lanai was growing again, and I just couldn’t take on this job too.  So—long before I took charge of our finances and every other aspect of our lives—I contacted a friend who has a lawn business. He and his team quickly got our yard back into shape, all while Tom and I were out of town, then continued servicing the lawn every week.  What should have seemed strange was that Tom never objected to nor seemed grateful for this plan. In the past, paying someone for something he could do would not have been his idea of a wise expenditure. But he never said a word. In fact, only a few months after I hired the lawn service, Tom sold our lawnmower for a ridiculously low price to a neighbor who needed one.  I was amazed. Was he planning never to mow the lawn again?  Now that I know that he was at least on his way toward LWD, I know he didn’t have a plan...