(Unsplash) Marriage to someone who is living with dementia has taught me lots of things, many of which I’ve shared on this forum. I’ve learned about the disease, about the changing needs of people LWD, and about myself.   I’ve also learned that, all along the way, there’s a lot those not in this situation don’t see—even when they spend time with someone LWD. This is true not because anyone is trying to hide or have secrets but simply because what we observe in a few minutes—or even a few hours—of anyone else’s life, LWD or otherwise, never gives us the whole picture. Even my snapshots of dementia, as transparent as I seek to be, are just that: snapshots, small glimpses, and usually from my own perspective. Although I’ve tried to give Tom’s perspective a time or two, that’s getting more and more difficult to share.   Here, then, are some glimpses of what you do and don’t see (or would and wouldn’t see, if it were possible) when you see Tom and me:  WHAT YOU DO SEE: Tom and Marti arriving at church, medical appointment, or another scheduled outing.  WHAT YOU DON’T: The time it takes to get ready to leave. This includes last-minute bathroom trips or changes of clothes if he has spilled something along with finding sunglasses, reading glasses, sweater, and other necessary but often-misplaced items as well as (often) going back to close whichever door he exits and forgets to close.   WHAT YOU DO SEE: Tom smiling and nodding, enjoying others’ company.  WHAT YOU DON’T: Tom recalling fewer names and participating less and less in discussions because he can’t come up with quick responses.  WHAT YOU DO SEE: Tom eating an unusually heavy meal, often with dessert.  WHAT YOU DON’T: Tom’s lack of appetite control; he can eat a huge amount or very little without realizing what he’s doing or feeling either hungry or full.  WHAT YOU DO SEE: Tom adding excessive amounts of salt, pepper, or both to his food.  WHAT YOU DON’T: Tom’s dementia has stolen his sense of smell, which has diminished his sense of taste. As his dementia worsens, this seems to be worsening too.  WHAT YOU DO SEE: Tom wearing a sweater, long sleeves, and long pants even when temperatures are in the eighties or nineties.  WHAT YOU DON’T: Tom’s brain doesn’t process temperature well, and he is often cold. We keep a blanket in the car and a cardigan in the pouch on his walker to try to combat this problem.   WHAT YOU DO SEE: Tom following behind me with his walker.  WHAT YOU DON’T: Him becoming nervous and unsure where to go when I’m not in front of him. I...

Do hard things.  So reads the plaque on my office wall, courtesy of my two former “work daughters.” That phrase became our mantra as we learned that God often calls us to the more challenging choices, those more difficult, more sacrificial, and often, more right.  He calls us to do hard things.  For me, that sometimes means handling insurance, tax, or other details I’d prefer to ignore. Sometimes it means interrupting my work multiple times a day to help Tom with a word game or find a (temporarily) lost item. Sometimes it means taking on yet another household task he can no longer perform.  And sometimes it means helping him tackle a challenge I’m not sure he can handle. In the past, if such a situation occurred while I was raising children, I might have said I was giving my child the freedom to fail.   But Tom already experiences small failures multiple times a day. When I help him do hard things, I’m giving him the freedom to succeed—even if success doesn’t look the way it used to.  For most of his working life, Tom served as a senior pastor, then a worship pastor/minister of music. He also played his trumpet professionally for churches and other venues. As a worship pastor, he planned and directed a number of Christmas productions, some with three performances per Christmas season and components including drama, lights, and sound as well as choral work.   This year, when our worship pastor announced that our choir would combine with two others for a community Christmas presentation, I felt both excited and sad. The music came from one of Tom’s all-time favorite arrangers, but the production was shorter and less complicated than the ones he had directed. Yet as I read over it, I knew it might still be too much for him.  I wondered about his physical ability. I knew he wouldn’t be able to stand for much of the time, but I also knew that, just as he used to tell his choir members, it would be fine if he sat.   I wondered about his emotional ability. How hard would it be for him to “only” sing when, just a few years ago, he had directed similar productions?  I wondered about his cognitive ability. During our regular choir practices, I’d noticed him struggling to follow along with his music at times. How would he handle this more difficult score?   Tom accepted the idea of the Christmas production well—not enthusiastically, but he rarely shows enthusiasm anymore now that he is living with dementia. Before long, he told me he wanted to try out for a solo.  What? I’m wondering if he can even sing in the choir, and...

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...

Tom’s walk-in turtle pen Some of my posts carry a lot of emotional weight, last week’s being a good example. Since living with dementia itself carries a lot of emotional weight, in order to present accurate snapshots, I do my best to let you see what I see and even feel what I feel.  But sometimes, what I feel is not sadness but love and light. Back in our child-rearing years, God sometimes allowed me to step outside of the chaos and catch a glimpse of the beauty. He does that with dementia too.   So, lest you think we’re living in constant heartbreak, please know that we also have times of genuine joy.  I find that joy when:  — Our primary care physician speaks to Tom as a real person, laughs at his humor, and waits patiently for his responses.  — Our four-year-old grandson can’t wait to go bowling with Grandpa.  — Our young worship pastor shows respect for Tom’s musicianship as well as his sense of humor.  — We spend the morning running errands, which will wear Tom out for the rest of the day, and he tells me, “This was the best day ever.”  — Tom expresses amazement when I find something, usually his reading glasses or the TV remote, that he’s lost for the fourth time in an hour.  — A friend texts us just to check on us and remind us how much we mean to her.  — Our nearby children invite us to meet them for a spontaneous meal or other treat.  — Our farther-away children call or video chat with us.   — The staff of our local library gives every indication of helpfulness and no indication of annoyance when Tom gets confused during the checkout process.  — Our senior pastor refers to him as “Pastor Tom.”   — Tom finds delight in a simple meal because for him, simple is good.  — A doctor or other medical staffer looks at the whole picture of his health rather than pulling out one specific element.  — Tom blows a few notes on his trumpet or gives our son advice about how to play a particular song.  — Our oldest daughter hand-picks two of her students to help her build a walk-in turtle pen so her dad will stay safe when caring for his beloved box turtles.  — We visit a nursing home with our church’s senior adult choir, and Tom not only sings beautifully but speaks words of encouragement to every resident he meets.  — I look forward to some time away, knowing our youngest daughter, with help from her siblings, will keep Tom both happy and healthy while I’m gone. (More about that in my next post.)  If you’re a dementia care partner, what...

Photo by David Mullins on Unsplash As I’ve said before, Tom and I are the typical opposites who attract. We realized early on in our marriage that even our sleep patterns differed. I could remain alert late at night but took a while to feel like talking in the morning. He needed an earlier bedtime but arose, fully recharged, no matter how early the alarm clock rang.  All that changed, however, with the arrival of our first child—and then our second ten months later. I’ve often said that mothers have to be both night owls and early birds. Once again, my parenting experience has served me well, as I now need alertness at many times of the day. That’s especially true because over the past several months, sundowning has played a more significant role in our lives.  In case you haven’t heard of sundowning or sundown syndrome, it refers to a set of symptoms that typically occur as daylight begins to fade, generally in older adults with one or more forms of dementia. It can involve restlessness, agitation, irritability, confusion, and more—and it often makes going to bed and staying asleep a challenge.  Tom has taken medication to help him sleep since we first began treating his dementia symptoms, so I suppose he’s shown sundowning behaviors for a while. Without the medication, he tends to wake up much more or becomes agitated, even violent, in his sleep. With the medication, he sleeps well—for the most part.  As a person living with dementia, he also requires more sleep than he used to. The activities of daily living are much more difficult for him than in the past. His broken brain has to work harder to process simple conversations and ideas. If we have an outing or appointment during the day, he almost always comes home exhausted. He still loves interacting with people, but the mental challenge wears him out.   That exhaustion was one of those dementia symptoms I noticed long before the doctors agreed with me that anything was wrong. The simplest tasks seemed to tire him, and he took naps whenever he had the opportunity—something he’d never done before. I wondered if he was aging prematurely, and in a way, I guess he was. If you look at photos of him now compared to even a few years ago, you can see the toll his disease has taken on his face. Of course, that’s nothing like the toll it has taken on his life.  Tom’s sundowning means I can’t ask him questions late in the day and expect a coherent (or any) response. His tremors worsen, so he’s more likely to spill his food and drinks. For the past month...

Roses from my garden, 2022 Friends and acquaintances often ask me how Tom is doing. The short answer is that there’s no short answer. The long answer? Well, I wrote about that here.  If that question is a FAQ, this next phrase is an FMS: Frequently Made Statement. It comes in several different formats, but they all sound a lot like this:   — “I hope you’re taking care of yourself.”  — “Don’t forget to take care of yourself.”  — “You know, you really need to take care of yourself.”  You get the picture: I have friends and family members who want to make sure I’m not lost in the process of caring for Tom. I don’t think a lot about this topic until someone brings it up, but I do find ways of caring for myself. Just as the rest of our life looks very different now than it did only a few years ago, self-care looks different too. For one thing, I can rarely leave the house without Tom. For another, I’m the breadwinner rather than the freelancer who scheduled her work around family and other commitments. The COVID-19 pandemic hit not long after I began working from home and caring for Tom full time. For more than a year, we didn’t go out much at all. That and my God-given bent toward home and family shape my lifestyle even now.   So, in no particular order, these are a few of the ways I practice self-care:  — Exercise: I’ve been in the habit of walking at least three miles/day for many years. I try to do four or five miles a day now. Much of that happens inside the house because Tom’s leg pain means he doesn’t always feel like walking, but when we can, we still enjoy walking outside together.  — Showers: After multiple mission trips to countries where water is a luxury, a shower remains a cherished gift. Right now, I can still shower while Tom rests in his recliner. Those few moments of peace, enhanced by my favorite bath products, provide simple but special self-care.   — Worship:  Worship feeds my soul and spirit more than anything else. When I attend choir practice, the songs stay in my heart all week and provide needed strength. If and when Tom can no longer attend church services, I plan to have someone else care for him so I can still go. Online church is a wonderful provision, but it doesn’t replace in-person connection.   — Baking: Gone are the days of making 50 dozen cinnamon rolls over a three-day period to support our children’s mission trips. But I still love to bake, and that meshes well with...