Photo by Khorena Sanders on Unsplash Author’s Note: This post is part two of a two-part series. Check out part one at this link, then pick up the story below. For one of the first times ever, I posted a brief summary of my concern on the Facebook support group I had recently joined for spouses or partners of those with frontotemporal degeneration (FTD). By this time, my kids and I had looked at the symptoms of FTD, behavioral type, and been amazed. After months and years of trying to find out what was wrong, here was a disease that looked like a perfect match. Why had no one mentioned this before? We’d have to wait for more testing, but it certainly looked like this was a possibility. I may write more about this later, but this group was rapidly becoming an information source, sounding board and source of encouragement for me. And this case, it was a lifeline. I shared the various driving-related incidents that had occurred and that we still didn’t have a real diagnosis or definitive answer. But to a person, everyone who responded (and there were more than 40 who did) to my question said: Do it now. Don’t delay. Keep him from driving no matter what. I read stories of accidents, of liabilities, of spouses who were still driving and had major problems. I read of doctors who refused to say the FTD patient needed to give up their license, only to have an accident occur. But mostly, I read what I’d already read on this site: Our story. And I knew it was time. I shared all this information (what had happened with their dad and driving, what our former pastor had said, what the other spouses had said) in brief with the next set of reinforcements I called in: Our children. I am sure I sounded at least somewhat irrational (after all, by this point, I probably had sleep deprivation.) But I could not in good conscience keep letting Tom out on the road. Or could I? I knew I needed the wise counsel of those who also loved him and wanted his best. I didn’t want to mess this up. I don’t actually remember which of our children I contacted, but I do know they all agreed to “talk amongst themselves.” The conclusion? No, Dad should not drive. Yes, they should help me tell him. Our two oldest daughters suggested they initiate a Skype call with Tom and me (this was before Zoom had reached its present-day popularity). “After all,” said one, not quite tongue-in-cheek. “He’ll know we must be serious if the two of us agree.” We made the call....

Photo by Marc-Olivier Jodoin on Unsplash Before we could return to neurologist No. 3 for the second time, a crisis occurred that forced our family into a huge decision. At this point, Tom was still driving. In fact, he was driving for a ride-share company. Sounds crazy for someone who might have dementia, right? Well, yes. And no. Think about it. He had lost three jobs in quick succession. Where could he find work? He loved to drive. And although he struggled with directions now, God and GPS cover a multitude of sins. Add that to the fact that no doctor had diagnosed any specific problem beyond depression, and you’ll see why (although I did have concerns) Tom remained on the road. I discussed Tom’s driving with my adult children (for a while, I had noticed him following more closely than he should) and they agreed that removing driving privileges would be difficult. When necessary, maybe a doctor could make that decision, but not right now. That was our plan. So yes, I’ll go ahead and say it: We were wrong. And I apologize to anyone I may have unknowingly scared or hurt because we were not more proactive. And I pray—and fear—for all of those who may be endangered by those still in the diagnosis or pre-diagnosis process with a disease like Tom’s. I’m convinced; there are many still on the road who should not be. Here’s what happened. Tom was driving for the rideshare company and quite happy to do so. I wasn’t as happy, because he was staying out for longer and longer periods of time. He had a certain daily financial goal, and he would stay out until he reached it. No. Matter. What. Of course, I didn’t know then about the obsessions his type of dementia (frontotemporal degeneration, or FTD) causes (read more about that in this post.) His desire to work and the low pay rate played right into this. The more he drove, the more he wanted to drive. And although I didn’t realize it at the time, I now know he didn’t have the logic or understanding to think, I’m tired. I should stop driving. I need to go home. For him, it truly was all about the money. He was so happy to contribute to our family finances again that he would drive. And drive. And sleep at the side of the road. And drive. As days and weeks passed, I became more and more concerned about his hours. I had more than one serious talk with him where he would promise to “only” work eight hours. Of course, he never kept those promises. At the time, I thought he...

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...

I knew it would happen. I just didn’t know it would be so soon.  I knew the day would come when our oldest grandson, who is now five and a half, would show more responsibility, be more careful, and have more understanding than my husband, who is living with dementia.   I knew the day would come when our grandson’s brain, which is constantly growing, would work better and faster than my husband’s, which is constantly shrinking. I knew the day would come when the two would—in terms of cognitive ability—meet in the middle, one continuing to advance, the other continuing to decline.  I knew it would happen. I just didn’t know it would hurt so much.  I didn’t come to this realization in an instant, of course. In reaching this conclusion, I am probably several months behind.  One of the places Tom and Lincoln both love is Chick-fil-A, Tom for the food and Lincoln for the play area (not to mention the ice cream). Over this school year, we have often picked Lincoln up on a Friday and taken him either to our house or this favorite spot for dinner and play time.  When we visit our local Chick-fil-A, we have to walk across the drive-thru lane to enter the restaurant. I used to hold our grandson’s hand when we did this to make sure he stayed safe.   But for the past several months, I’ve asked Lincoln to keep Grandpa safe. He walks beside Tom, holding his hand or his walker; looks both ways when we have to cross the drive-thru lane; and opens the door so Tom and I can go through first.  In the past, I loved our trips to Chick-fil-A because it was one of the few places where Tom would engage with Lincoln. He would stay in the play area with him, hiding from him as he came down the slide, then jumping out to “scare” him. Even while LWD, he did his best to make sure Lincoln stayed safe.  These days, I choose a table close to the play area because Tom rarely wants to go inside with Lincoln. I can monitor our busy boy from the table or, if I’m in the play area with him, keep an eye on Tom, who is usually sitting at the table, eating or staring into space.  We can still do the same activity; it’s just different now. We can still enjoy our time together; it’s just different now. Tom’s still himself; he’s just different now. As time has gone on and his brain change has continued, I’ve made some necessary adjustments. Some of these have been big ones: Managing all our money. Becoming the sole breadwinner....

Tom singing at a nursing home, July 2022 A big part of my writing life has come through my relationship with Dr. Walker Moore of Back 40 Ministries. He and I have collaborated on three books and worked together in both his former and his current ministry as well as on the mission field. I’ve also edited his weekly column in the Oklahoma Baptist Messenger for a number of years, and we’ve shared in other publishing projects as well.  One of my favorite teachings in our book Rite of Passage Parenting and its companion workbook is the concept of a significant task: a special assignment that demonstrates an individual’s worth to the people who are important to them. For a four-year-old, a significant task might be emptying the wastebaskets or helping sort laundry.  For a fifteen-year-old, a significant task might be changing the oil in the car or taking responsibility for a part of the family budget. Those who don’t have significant tasks often look for significance elsewhere—often in inappropriate ways and places.  I realized not long after Tom’s official diagnosis that one of the wounds for people living with dementia comes from the loss of their significant tasks. Near the end of 2018, Tom experienced the loss of his worship pastor job followed by the loss of the ability to hold a job at all. Within a few months, our family also asked him to stop driving—another loss of a significant task. And before all this, when he secretly gave away thousands of dollars to online scammers, I took over our finances and removed yet another significant task.  I didn’t want to manage everything, and my personality is by no means controlling. But Tom’s dementia has meant I have no choice but to be in charge of our significant tasks. So how can he still know he has value and purpose?  My solution has been to let Tom be as responsible as he is able as long as he is able. These are his primary significant tasks:   — Coffee Service: Tom loves coffee; I do not, so he’s almost always made the coffee in our home. Before we sold our Florida house, our son had to repair a warped kitchen drawer because Tom had forgotten to put the carafe under the coffeemaker so many times. A few years ago, our wise children gave him a coffeemaker that dispenses only a cup at a time. Tom still has frequent spills (yesterday’s soaked two bath towels plus), and I often find him reading the instruction sheet for the coffeemaker over and over. I’ve started helping him more, but I want him to keep this task as long as he can because it means so much to him.  — Water Delivery: I don’t...