Coping: It's Not Just Hanging On

In a text yesterday, with a friend who is going through his own dementia journey caring for his wife, I used the word “coping.” It was the right word used in the right context but, I haven’t been able to stop thinking about that word since yesterday.

When you hear the word coping, what comes to mind?

Probably not something fun. You’re not “coping with a vacation” or “coping with a surprise inheritance.” Coping is almost always tied to something hard—grief, stress, illness, change. It usually signals that someone is just barely keeping their head above water.

But here’s the twist: coping has another meaning. One that’s actually kind of…crafty.

If you’ve ever done any woodworking or home improvement (or wandered into a hardware store with confidence you didn’t earn), you may have come across a coping saw. It’s a thin, flexible saw used to make detailed cuts—especially when you need one piece of wood to fit snugly against another at some weird angle. It’s not about hacking something apart. It’s about precision. Fitting. Shaping.

Now hang with me, because this got me thinking.

Isn’t that a better way to think about coping in the emotional sense, too?

Coping isn’t just about surviving the storm. It’s about figuring out how to shape yourself around a new reality. Maybe life took a sharp turn, and now you are trimming off some old expectations or reshaping the edges of what used to be familiar. It’s slow work. It takes patience. And honestly, some days you might feel like you’re using the wrong end of the saw.

The root of the word cope actually comes from old languages meaning “to strike” or “to contend.” In other words, to deal with something head-on. It wasn’t originally about quietly suffering—it was about showing up and doing what needed to be done, whether that meant going to battle or learning to live with a new normal.

So maybe we should stop treating coping like it’s something sad and pitiful. It’s not weakness. It’s craftsmanship. It’s adaptive, creative, even a little gritty.

“If you aren't in over your head, how do you know how tall you are?”
― T.S. Eliot

We’re not falling apart—we’re just figuring out how to fit into a new corner of life. One careful cut at a time.

What My Car Battery Taught Me About Potential

If you are one of the 19 people that consistently reads my blog, you know that I’ve been caregiving full-time for my wife, Carol for quite a while. It’s not a job I was trained for. There’s no manual, no certification. Just love, patience, leaning on God, and trying to recall how Carol handled things... and trying to do what she would have done.

But it's an unusual kind of exhausting. Not split a cord of firewood exhausting, not carrying your wife's shopping bags at the outlets exhausting, not taking off those post-workout yoga pants exhausting, no—the emotional and mental kind. For a long time, I didn’t even notice how depleted I had become. I was getting through each day like an iPhone 6S that only charges to 12% no matter how long it’s plugged in. Running on fumes, on my last leg, [insert favorite idiom here.]

Almost a year ago, I finally did something that felt almost radical: I hired someone to help me. Her name's Joanne. She comes three days a week. Six hours a day. 18 hours out of the week's 168. That’s it. But those three days give me back pieces of myself. Time to walk. Read. Think. Breathe. Write. Enjoy a $7 coffee. Remember that I’m still in here.

I started to feel like… me again.

And it got me thinking about energy. Not the caffeinated kind, but the deeper kind. The kind we all carry quietly—the stuff we call potential.


So Here’s Where the Battery Comes In

For almost 33 years I worked for a company that, among other things, produced a lot of battery-powered vehicles. So I know a bit about storage batteries. I promise this isn’t going to be a science lesson. But stick with me: a lead-acid battery (like the one in most non-EV cars) contains something called potential energy. It’s the power stored inside, just waiting to be used. Not buzzing. Not active. Just… ready.

A fully charged battery isn't a box of electricity though. It actually is a box of chemical potential energy. When a demand/ load is wired to it, there is a chemical reaction that immediately starts to occur (I'll spare you those details) that converts the chemical energy into electrical energy. But, as that chemical reaction occurs, the battery ingredients do start to lose some of the potential for energy. The lead materials convert to different forms of lead with lower potential energy. The dilute sulfuric acid changes and starts to move towards the chemical direction of water. But, even with repeated use, the battery still has potential.

That’s what I think we lose track of when life gets hard—especially when we’re feeling depleted from responsibilities, loss/grief, working too much, or simply surviving. We forget that even when we’re worn down, we still have energy inside us. It’s still there. It didn’t vanish. It’s just been slowly depleted by life.

Maybe you’re like I was—still functioning, still doing all the stuff, but forgetting what it feels like to be plugged into something that starts getting you back to full charge.


But, You Don’t Have to Always Be Fully Charged

Enough about me and my car battery. The truth? You don’t need to be at 100% to make a difference. A battery at 55% can still light up a room. You can still write, connect, smile, make someone’s day, or still tell people why you think about the Roman Empire.

We think potential has to look Instagram ready and strong. But often it looks like getting out of bed, getting dressed and walking around the block. Or calling a friend back. Or sitting with a quiet thought long enough to hear yourself think again. Or talking to God (that's a whole other power source conversation.)

The point is to keep the current flowing. Use the potential.

Recharge Without Guilt

Rest isn’t laziness. It’s physics. Help asked (or hired) isn't weakness. Took me some time to accept this. Today is Saturday. For many folks this is a recharge day. I have a friend who is celebrating a birthday today. I texted her Happy Birthday and asked her how she was spending her birthday. She said she was hanging out with her family. Recharge. I have another friend who is about to leave for the beach for their annual summer beach trip. Recharge.

Even the most powerful batteries need downtime. Recharging, especially after caregiving or loss or burnout, isn’t selfish—it’s how you make sure your light can last. It's the process that puts the energy potential back to it's optimum state. A battery that stays in an ongoing state of discharge eventually breaks down.

But, the beautiful part? Every little recharge you allow yourself gives you more to give. I'm a better caregiver when I keep the battery healthy.

Energy Vampires

I have an old Ford Taurus that has something that isn't obvious that constantly but slowly drains its battery. Mechanics call it a parasitic drain. Something less obvious that is draining energy. Even a good battery can get drained fast if it has somehow gotten connected to the wrong stuff. Be mindful of people, habits, or expectations that leave you feeling more drained than you ought to be. We have enough in our life that are the necessary energy consumers. We don't need the parasitic kind.

Boundaries are insulation. Use them. I've had to use them a lot given our circumstance.

I think I've learned some things as Carol and I have navigated this dementia journey. One is that I'm no good to Carol or anybody if I waste my potential. So that requires some battery maintenance. Rest, Relax, Recharge, Respite.

You need it too.

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I Applied For a New Passport

Given my current situation, which most people that have been reading my blog know, this action on my part might seem a bit odd. And maybe it is. I haven't needed a passport since Carol, our son, and I went to Korea exactly 13 years ago to visit our daughter and her husband, who was stationed over there.

she had a blast

Two months after Carol's dementia diagnosis in 2016, I took her to Niagara Falls (on her bucket list) and New England. We did walk over into Canada one of the days we were there but it didn't require a passport going in either direction. (This was before Canada was our 51st state.) I've not left the country in almost 9 years. It's an accomplishment now if I leave the house.

Rainbow Bridge US-Canada

You may have noticed the title of this blog does not say "I renewed my passport." That's because you only have up to 5 years after your 10 year passport expires to renew it. I've waited too long. I had to walk into a Post Office like I was getting my very first passport. (My expired passport was adequate proof of my citizenship though... my birth certificate was unnecessary.) By the way, why do so many cities' main US Post Office buildings feel like you are stepping back in time to 1979 when you enter? Except for the computers and electronic payment stuff they have at each station and no FBI pictures of the Unabomber on the wall, it still looks and feels like a bygone era in there. That said, the guy that handled my application could not have been any nicer. It was a painless experience.

So, sometime before college football season resumes, I should see a new passport come in the mail.

So then what?

I don't know.

I'm not sure that I can really articulate this. For me, the passport represents something. Sure, it documents that I am a citizen of the United States of America. And that's a pretty big deal. But, it is more than that. A valid US passport represents the freedom to travel to foreign lands and to be welcomed back on return. It says, no matter where I go, I can return home.

But, even more important than that, it is the idea of being able to go in the first place that is invigorating to my soul. (cue Mel Gibson shouting, "FREEDOM!")

The season that I am in right now is not a season of "go." It's not a season of getting out into the world and enjoying what it has to offer. This current season says, "stay." And it is with genuine cheerfulness and a profound sense of purpose that I do that because it is the right and necessary thing to do. And I do it because of love. I do confess though that I have to instruct the wanderlust creature inside of me to settle down... and wait. But it's often like I have a pestering back seat passenger nagging me with refrains of, "are we there yet?" I'm truly confessing here.

There will be a new season one day and I really don't know what that season will look like. I mean, how could I? I simultaneously yearn for it and absolutely dread the thought of it. That's an acutely strange place to be.

I don't know what tomorrow holds so I surely don't know what the next season does. My hands are full with today. But, whatever comes next, I probably shouldn't stagger into it as if I'm a deer staring into headlights. That's why I need my precious blue and gold permission slip that whispers, "it's OK... if you feel you need to go... then go." 

One day.

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Quiet Exile

It’s now 11:39 am on Saturday. I can see by my Kasa app, which shows views from the 3 different cameras I have pointed at the hospital bed occupying our bedroom, that Carol is still asleep. It’s not unusual for her to still be sleeping after 14 hours… sometimes she sleeps until early afternoon.

Earlier this morning I decided that I should write some. Maybe try to describe some things I have been feeling. Just this week, a good friend encouraged me to keep writing. And some recent posts by Sean Dietrich* (Sean of the South) have prompted me to maybe bare a bit more of my soul. Why not. As I have mentioned before... it is good therapy for me I think.

The dictionary defines exile this way:

exile

noun

: the state or a period of forced absence from one's country or home

Caring for a spouse with dementia is described as a labor of love, but rarely is it acknowledged for the real sense of exile it can bring. This exile isn’t marked by distance or borders, but by an invisible barrier that grows between the caregiver and the world to which they once belonged. As a caregiver, I remain physically present in my community—shopping at the same stores, walking the same streets, even spending much cherished snippets of time with friends and people I know—but emotionally and socially, right or wrong, I feel like a stranger in a place that no longer recognizes me.

The first signs of this exile appeared quietly (and none of what I am saying is criticism… it is just reality.) People stopped calling as frequently, unsure of what to say or how to offer support. Invitations dwindled, conversations grew awkward, and I began to sense that our presence—mine and Carol’s—was a reminder of something uncomfortable, something folks would rather not confront. Dementia is not just a disease of memory; it is a slow, painful unraveling of identity, and with it, the social fabric that once connected us to others, began to fray.

Daily life becomes a series of negotiations—managing moods, repeating answers, calming fears—and through it all, I find myself both overexposed and invisible. People may recognize the effort, but few truly understand the isolation. The emotional burden is heavy, compounded by grief that comes not in a single moment, but in a thousand small losses. Carol is still here, yet gone in so many ways. And, in losing her bit by bit, I also lose the future we imagined, the roles we once played, and the shared life that anchored me to my “community.”

Support groups (via a few online FB groups) offer some solace—a reminder that I am not alone in this exile—but they also reinforce the truth that this is a separate world, one outsiders seldom enter. While others make plans, chase goals, and talk about their next vacations, I measure time in medication schedules, hospice nurse visits, and quiet moments of lucidity.

I’m pretty sure being a caregiver has indelibly changed me. I think it has taught me some patience and compassion, yes, but also a hard-earned resilience… but mostly forged in solitude. Just me and God. I don’t seek pity, but I do wish for recognition—not as a hero, but as someone who, while caring for another, has quietly lost his place in the world I once called home. In that quiet loss is a truth many caregivers carry: that love, even when constant, can be a lonely road.

Sorry if this was hard to read. Imagine how hard it was to write.

*if you are not familiar with Sean, you really should check him out. He writes via Substack

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Things About My Carol: Part 9: "She Is Truly The Best Person I Have Ever Known"

GHHS 1973 yearbook

Back in 1973, they stated that Jean and Mike (not me, another Mike) were the most dependable. Nathaniel and Beulah were the wittiest. Amelia and Art were considered to be the most creative. They said that David and Stephanie had the best personalities. It was agreed that Yasmin and Mark were the most athletic. Victor and Debra were voted the most attractive. And, finally, everyone was sure that Deborah and Ronnie were going to be the most successful. Almost every high school has (or at least had) a (somewhat strange) tradition wherein graduating seniors vote to decide which of their fellow soon-to-be graduates are considered to be superlative in various categories important to 17 year olds. The names above are from my graduating class. I had no disagreement with our choices. These classmates of mine were well-deserving.

Carol (we graduated from different high schools) wasn't voted by her senior classmates as having had any superlative attributes that are yearbook worthy. Part of the reason was because she didn't stick around long enough to actually become a high school senior... she graduated early after her junior year. Given my recollection of what high school was like back in the 1900s, as well as Carol's somewhat in-the-background public persona, I doubt she would have been a winner of any parts of the popularity contest. And that would have suited her just fine.

We don't remain 17 or 22 forever. I've known more than a few folks that continued to live out the glory days of their high school or college years well past the time when those achievements should have been filed under fond memories. It's like the 40-something guy in the bar bragging for the umpteenth time about the winning touchdown pass he threw in the region championship game (he fails to recount how they lost in the state title game.) Most of us don't rest on our teenage laurels. 

So, how do you measure success in life? How do you really know if you have done it right and made a difference? Some of the things we do as a consequence of our careers or other endeavors come with accolades, recognition, awards, and rewards. But, for most of us, we just live our lives as best we can not seeking or expecting trophies.

So here's my superlative declaration:

Carol Williams Toomey is the best person I have ever known.

"What is your criteria for saying that other than the fact that you feel you need to because she is your wife?" you may ask. I actually don't feel obligated to make that statement because she is my wife.

I don't think you have to believe or say that the person you married is the most attractive person you've ever met. I don't believe that your spouse must be the smartest person or have the best personality. Your spouse doesn't necessarily have to be your best friend in the world (although she is mine.) I mean, let's be pragmatic for a second. There are 340 million people in the United States alone. I know and have met people that are more physically beautiful, or intelligent, or creative, or successful, or funny, or talented, or several dozen other qualities that we often consider the most important. Make no mistake, my wife has all of the qualities I've just listed. But nobody would vote her as being "the most" on any of them.

But there are qualities that I have not listed that are far more important to me. The apostle Paul itemizes some of these important things in his letter to the Galatians- Chapter 5:22-23-  being loving, joyful, peaceful, patient, kind, a desire to do good, faithful, gentle, and not impulsive. He describes those as "fruits of the Spirit" (that would be the Holy Spirit.) I know Carol to have an abundance of all those qualities.

The Carol I have known for almost 43 years is a woman that loves profusely, is full of humility, is never attention seeking, is giving, caring, kind, compassionate, loyal, polite, friendly, gifted, fun-loving, clever, spicy, smart, hard-working, tender, beautiful, devoted...     

and has shown great patience with me.

When I met Carol I was a pretty broken person on the inside trying to maintain a facade that suggested otherwise. Once married, I don't think it took too long for Carol to figure out that I was going to be a work-in-process. She probably didn't intend to sign up for that but, she took on that unspoken assignment with patience and love.**

But this is the most important part. Carol was my first best glimpse of Jesus. Oh, I had grown up as a child going to church and even attended parochial school early on. But I was as lost out in left field as a person could be and had remained so well into adulthood. I honestly didn't know any better. Until I witnessed and experienced better.

And her example pointed me to the One that changed my life.

Carol is the best person I have ever known. For a hundred reasons. 

Most importantly, she reminds me of Jesus. 

** For the last 9 years, her dementia diagnosis has given me the unexpected opportunity to give back to her in many of the ways that she has given to me in the first 33 years of our marriage. So I don't consider caring for her over these last few years a burden at all. I consider it a great privilege.

I like to think that, in being an amazing role model, she taught me well.

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Things About My Carol: Part 6: "She's Also Had Cinephilia For Years"

It was mild at the beginning. I learned of it as early as our very first date when I took her to see Rocky III. Over the years, especially after our daughter was born, it got progressively more pronounced.

I remember she had gone to our pediatrician's office for a check up for Jessica. When she came home she told me what the pediatrician had said to her. She was still a bit in shock when she told me. Her revelation started out with a simple question, "do you know what Dr. Allen told me?" I immediately thought she was going to tell me about the results of Jessica's check-up or that something was wrong.... "no, what did he say... what's wrong?" I anxiously asked.

Then she told me. "Dr. David told me that he and Kathy go to two movies on their date nights!"

"Wait, what?" I said. "Yes, he said that they figured it made sense, since they were already paying for a babysitter, that they should make best use of that time... so they go to two movies on the same night!"

"That's crazy!" I said. She agreed but she also said that it makes perfect sense. Both of them love movies and try to maximize the cinema experience when they go out.

Btw, the word cinephilia comes from "cinema" and "philia"- one of the 4 ancient Greek words for love.

I remember the first Friday night (our regular date night) we decided to try it. There were movies that began around 6:45- 7pm and the next showings were usually 9:00pm or just after.

The immediate dilemma was do we go ahead and buy both sets of tickets or do we watch movie #1, leave the theater, buy tickets for movie #2, and re-enter the theater?

We chose poorly. We bought both sets of tickets. Being rookies at this, we discovered that, after watching movie #1, we were too tired to stay and watch movie #2. No refunds allowed. We gave the tickets to another couple.

We quickly learned that, although we were open to seeing two movies, it wasn't always practical. Sometimes there weren't two movies we wanted to see. Sometimes we were satisfied with our cinema experience after one movie or just wanted to do something else after the movie. And then there is that truism, "a mind can only absorb what the butt can endure." That said, I think we ended up going to two movies over 50% of the time when we went to the movies on date nights. (This gives you some idea of the volume of movies that Hollywood was putting out in the 80s and 90s.)

When we told our friends what we were doing you know what the most frequent question was?

"So, after the first movie do you just sneak into the second movie without paying?"

It was then we realized that either we needed to find less sketchy friends...  or maybe our friends thought we were the sketchy ones. Hmmm.

Carol loved going to the movies and just watching movies in general (romcoms are her favorite.) Call her a cinephile, movie junkie, film buff, or whatever. Movie watching has been one of her most favorite forms of entertainment for the 42 years I've known her.

Back in the VHS days we regularly rented videos from all the outlets in Augusta that rented them... grocery stores, Blockbuster, Phar-Mor (remember that discount drug store chain?) Sadly, Phar-Mor turned out to be the sketchy ones. The CEO and CFO were defrauding investors, hiding and falsifying financial information, and both were convicted and sentenced to prison. We also purchased many VHS movies when the pricing became less prohibitive (VHS tapes were expensive in the early days.) After a few years, the higher quality DVD era began. All the VHS tapes we bought eventually were just given away in yard sales. Nobody owned VHS players anymore.

Slowly but surely, Carol began acquiring DVD movies. And I had joined this new upstart named Netflix for movie rentals.

DVD mailers

They allowed you to check out DVD movies and they were delivered to you in the mail. The number of movies you could have checked out at one time was based on the membership level you had joined.

Today, we must have between 500-600 movies on DVD. I actually tried to sell off our entire collection at a yard sale about 7 years ago but, I got no takers even at the very discounted box-load price. The DVD (and Blu-Ray) era was over, I guess.

this ain't even the half of it

When COVID hit, I was thankful that we had all those movies because, you know, not every movie is available on the streaming services. And, for many years after Carol's dementia diagnosis, movie watching was still her favorite thing to do. She'd watch a couple most every day. Sadly, the interest and her ability to remain focused has waned over the last 18 months or so as it has become harder and harder for her to even follow along with the movie's dialog. I'm not sure how much of it she can even understand anymore.

The other day I put in the DVD of "Pride and Prejudice" (the Keira Knightley version) to watch with her. It was always one of her favorite movies since its release 20 years ago but, the longer it played, the more it seemed to just agitate her. So I hit stop and ejected it. I used to earn pretty significant brownie points if together we watched the chemistry unfold between Elizabeth Bennett and Mr. Darcy. (I never told her that I actually do like that movie.)

The cinephilia was great while it lasted.

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Phar-Mor logo by RilennEdits - Own work, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=138121506

How Are You Doing?

More than a pick-up line?

Many years ago, during my life in the corporate world, we had a guy named Joe who worked in our Purchasing Department (that's what it was called way back in the olden days.) I actually went to high school with his son. I can remember passing him in the hallway one day and, as is often the case when you are doing a drive-by greeting, I said, "hey, good morning, how are you doing?" When we ask that question we usually expect a response like, "good, how about you?" It's not meant to be a real interrogatory; it's mostly just a casual salutation. But, on that morning, Joe took it as an actual question. For about 3 or 4 minutes he shared several things that were not going so well in his world at that time. I really had no choice but to stand there in the hallway and hear him out because, after all, I did ask him the question. I was caught off-guard and it was bit awkward. I wasn't expecting him to share with me how he was actually doing. But, the subsequent times I asked Joe that question, I was prepared to listen to this very nice guy, old enough to be my father, who apparently needed someone he knew and trusted to listen. Sometimes it was personal, sometimes it was job related, sometimes it was simply, "good, and you?"

A few years back, I taught a series of Sunday School lessons when I was leading a group of young parents. I called the series "Lies We Hear and Say At Church." The very first lesson topic was how we give the answer, "I'm doing fine" when asked at church (or most anywhere, really) how we are doing.

This should be no shock to anyone: it is sometimes untrue.

But here's the thing. When it is untrue, we often don't really know what to say instead.

Sometimes we fib because we just don't want to burden people with the truth. Sometimes we assume it is being asked more as a greeting than a real inquiry. Sometimes we truly don't know how to describe how we are doing. Sometimes it is just easier to say, "I'm doing OK, I'm hanging in there, I'm great, I can't complain, I'm doing the best I can." We've all said and heard some version of that answer almost every day.

There is another question that can be equally hard to answer... or at least answer honestly.

"How can I help?"

I was reading a blog on this very topic that posed a suggestion, "What if I had a list of responses ready ahead of time so I woudn't stutter and stammer and ultimately let the opportunity go to waste?" She then listed 15 example responses.

I'm not too sure I would be comfortable with having a laundry list at the ready. It would almost be like casually suggesting to someone, "hey we need to get together for lunch soon" and the person says, "that sounds great... how about right now?" Whoa whoa whoa! That was too quick. I wasn't ready for that answer.

There are several things I am not very good at doing. One is navigating the food spread at a reception, banquet, etc. where the food is self-serve with multiple tables, carving stations, etc. I always spend way too much time talking to people and miss out on getting much to eat. The buffet professionals, however, know exactly how to maximize the gastro experience. Some are adept at balancing multiple plates with one hand and loading them to the maximum. Others are the no-plate-needed buffet table grazers that feed for a while at one station and then move on to the next until they have gotten their fill of everything available. I don't think I even ate at our daughter's wedding reception. And I paid for all that food! I'm just no good at it.

The other thing I'm not good at is answering the question in any meaningful way when asked, "how can I (or we) help?" (especially these days) Sometimes people even suggest answers that I usually politely dismiss. Why do I do that?

Maybe I think I should be capable of keeping all the plates in my life spinning without letting any fall. Maybe it is pride. Maybe it is fear. I wish I knew.

"How are you doing?"

"How can I help?"

I need to be more like Joe.

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Things About My Carol: Part 2: "And though she be but little, she is fierce"

Some of you reading this have never actually met my wife, at least not in person. For those that have not, allow me to confidently boast... you have truly missed out.

Rudy and Fortune

In the classic sports movie, "Rudy," the title character has dreamed his whole life of playing football for his beloved Notre Dame. He has, by pure dogged determination, made it onto the practice squad for two years. However, he quits the team prior to the final game practice because he learns that he will not be able to "dress out" for at least one game, as he was promised by his former head coach. Feeling sorry for himself, he seeks a sympathetic ear from the head groundskeeper, Fortune, who had befriended and mentored him. Fortune speaks some reality to the undersized Rudy. He tells him, "...you're five foot nothin', a hundred and nothin'..." and goes on to tell him that he should be thankful to have even gotten on the practice squad, not to mention the quality education he has earned from the elite school.

I've always liked that line... five foot nothin', a hundred and nothin'. Why? Because it literally describes Carol. She tops out at five feet, 1 inch. Her average weight throughout most of the non-pregnant times of our marriage was right at 100. Five foot nothin', a hundred and nothin'.

However...

"And though she be but little, she is fierce!" (Emphasis mine.)

For you non- Shakespeareans, this is a well-known line from the play, "A Midsummer Night's Dream" (Helena is speaking about diminutive Hermia.)

The quote is often used today as a reminder that a person can be strong and brave even if they are small in stature. I have many adjectives that come to my mind when I think of Carol. Strong and brave are certainly on that list. As is fierce.

During the earlier years of our marriage, let's just say that some of my behaviors created disagreements and arguments. Far more times than not, whatever it was that Carol was upset about, her concerns weren't without merit. I, however, would sometimes get defensive and I could usually out-argue her. She would eventually withdraw (both verbally and emotionally.) Even now I regret the way my less mature self handled some of our disagreements. But, when she was determined to make me see that I needed to see her point, she didn't back down. Like I said, she is fierce.

She employed an effective tactic. She would occasionally write me a letter. You can't argue with a letter. There was one, multi-page letter in particular that I have kept to this day. I'm hesitant to disclose it, even 27 years later, because of the nature of it.  When I got home and found this letter on the dresser, I took it outside, sat on the picnic table, and read it. Through tear-filled, convicted eyes I read that I hadn't been spending enough time with our kids, and specifically with our son, then a third-grader. She said that I was allowing my job and my commitments at church to consume too much of my time and attention and that, if I didn't do something about it, I would look back one day and regret the time lost with our young kids. It takes a certain tenacity and ferocity to not give up on saying what needs saying when you know something is important and worth fighting for. That letter was a 2x4 to my forehead. It was also a letter full of love. She knew I needed both.

I saw that strength and courage so many times over the course of the 42 years we have been together. From her daddy's prostate cancer diagnosis two years before I even met her to his subsequent diagnosis over 10 years later when the cancer had metastasized and returned, I saw her strength and courage. I saw the strength as we helped her mama deal with her husband's death and eventually helped her sell her house and move into ours. And I saw that courage and strength when her mother's pancreatic cancer diagnosis came about 4 years later. Carol was determined that we would care for her at home while, at the same time, she continued home schooling our daughter. Carol never complained. She worked to keep our home life as normal as possible while caring for her mama right up until the end.

Carol did a lot of things fiercely. She loved her children... fiercely. She loved their spouses... fiercely. She loved the grandchildren... fiercely.

There was nothing nonchalant about Carol's love. If she loved you, she loved you fiercely.

And she loves her Savior with even greater intensity.

And all through her courageous, never complaining battle with this insidious disease that she fights, she keeps reminding me:

Though she be but little, she is fierce. Little Carol. One tough woman.

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Things About My Carol: Part 1: "She Can Talk Your Ear Off"

I mean this in a very good way

Just today, a Facebook Memory (you know those daily prompts from Facebook about things you posted years ago?) popped up on my feed. It was a video I posted 15 years ago shortly after our daughter's wedding. It's just a short 23 second clip of Jessica, Carol, and bridesmaids in the bridal room. I'm a pretty sentimental slob. Never really was that way until after our daughter was born. After the kids were born I found myself wiping my eyes to Budweiser Clydesdale commercials and sappy movies. I did get teary-eyed when I saw that 15-year old clip this morning though. I'll tell you why in a minute.

When Carol and I started dating back in the 1900s, I was amazed at how much she loved to talk to people. While she was always a bit on the shy side, once she was comfortable with you she would talk... and talk and talk. And she didn't care what your station was in life, she loved to talk to anyone and everyone... the wait staff, the lady that cleaned our hotel room, kitchen staff at church, the janitors at school. In fact, she would go out of her way to have a conversation with folks that in some cases get completely overlooked in our society. I always admired that about her. It's just the way she is wired. We were always the last ones to leave church when we had a nighttime service because of the conversations afterwards (I'll take some responsibility for this one too... I can be a bit chatty.) I could see the janitorial staff waiting in the wings for us to get out so they could finish and go home. I remember one night after leaving a restaurant I discovered that, somewhere along the way, Carol had disappeared. I was getting the kids into the minivan muttering "where is your mother?" Well, I look inside the restaurant and there she is having a full blown conversation with who knows who at one of the tables. It's obviously someone she knows and she is talking away. They can't eat their meal and I can't go home. I almost left her there. I could fill volumes about my Carol. Bottom line? She could talk your ear off.

Primary Progressive Aphasia. PPA. Probably not one of the most well known diseases. More people may be familiar with the singular term aphasia. Aphasia can affect people for several reasons. Sometimes it is a temporary condition and sometimes it is permanent and gets progressively worse. Aphasia is basically a disorder in the brain that impairs a person's ability to communicate. People that have suffered a stroke, brain injury, or have neurogenerative disease can experience aphasia.

Many of you already know this. In 2016, when Carol was first diagnosed we were told she had primary progressive aphasia which is one of the forms/ variants of frontotemporal dementia. I could get deeper into the weeds on it but, you can always Google it yourself if you are curious. More detail doesn't really add to what I wanted to say here.

It started with difficulty word-finding. There would be longer than normal pauses or more ums and ahs than normal when she would speak or answer a question. She couldn't come up with the word. As time went on it became more pronounced. Later it seemed she was having difficulty understanding some things spoken to her. Eventually the words were fewer and farther in between. Most recently, nearly all speaking has essentially ceased.

I remember coming home from work many an evening after Jessica and Michael were born and Carol would meet me at the door and want to tell me all about what had happened that day (she was a stay at home mom and I knew how hard that could be.) She hadn't spoken to another adult all day. I had just spent my entire day talking to employees, bosses, and customers non-stop. I can remember putting my hand up while we would be sitting on the couch and asking her, "please... can you not talk for just a few minutes until I can unwind a bit?" She always took it in the spirit in which I asked it. Sometimes she just spoke more than I could absorb. Later we would talk about our day and all the other things couples talk about.

I say all that to tell you this.

Among so many other things, I miss her voice. And when I unmuted that video this morning I heard the voice I haven't really heard in a year or two. And it reminded me of how much I miss it. And it hit me pretty hard. I'm having a hard time typing right now while she is sitting in the recliner right next to me.

(Be sure to unmute)

Yes, we have boxes of videos somewhere from all the video she took throughout our kids' entire childhoods. And I know we have her talking and laughing in several of them. I have only two voicemails on my phone from 2017 that I had the foresight to not delete. I listen to them occasionally. I will never  delete them.

Oh, how I wish she would talk my ear off again.

I'll share some more things about my Carol in future blogs. Most of what I write is really just for me. You are more than welcome to eavesdrop though. Never stop talking to the people you love.

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Is It Still Christmas If I Don't Decorate?

Carol was always the one that made the house look so nice for Christmas. The only real question was what day on the calendar was it appropriate to start decorating and putting up the Christmas tree. I was always in the camp of waiting at least until after we celebrated Thanksgiving, my favorite holiday. But the pull was always strong to decorate earlier as we fell deeper and deeper into the trappings of the advertisers, retailers, and Hallmark, who begin their Yuletide barrage even before Halloween (did I just say that out loud?) Or maybe it is just that Carol loved to get the house all dressed up for Christmas and the earlier the better. I never put up much of a fuss though. No need. I knew who the Christmas boss was.

This will be our 9th Christmas in Dementialand. In the first few years after her diagnosis, Carol was still able to do her thing as far as Christmas decorating goes. One of the many things (and favorite things of mine) she used to do was display, all around the house, the many different nativities we had acquired. We had several. Over the years I tried to find new ones in my/ our travels. We had nativities from Israel, Italy, Brazil, Panama, and Ecuador, among others places. Some were full manger scenes, some were just a piece or three.

                  

As the years went by, the responsibility fell to me to do the Christmas decorating. Trust me, you don't want me doing your Christmas decorating. I have no talent for it. But I've tried, at least, to put up our little pencil tree with a few ornaments and some other sparse decorations here and there.

This year has been different. This year I've done nothing. Our kids and grandkids are coming to spend Christmas with us (this is "our" year for Christmas; last year was our year for Thanksgiving.) Our family won't be here for Christmas day though. They will do Christmas morning at their own homes with their kids. As it should be. Kids and grandkids arrive a day or two after Christmas.

But, Carol doesn't even know it is December, much less soon-to-be-Christmas. So, I have done zero decorating this year. It's not because I'm lazy or depressed or anything. It just seems... unnecessary. I've been focused on other things. Of course, I have presents for all four grandkids and they will tear into them when they all get here. And we will feast on a great meal together Saturday. And we will rejoice!

So, is it still Christmas if I don't decorate? I guess that depends on what the holiday means.

Jesus Christ is still Emmanuel... God with us. And we will still celebrate the gift that God gave all of us over 2,000 years ago. I'm pretty sure that God is more concerned with what is in my heart than what is under (or on) my roof.

Christmas isn't Christmas because of anything I do. Or you do. Christmas is Christmas because of what God has done. Jesus is all the adornment we could ever need.

The answer is yes.

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Hurricane, Hospital, and Hospice

• It wasn't supposed to hit here.
• An ambulance ride was not in our plans.
• We were supposed to finish our working careers, retire, spend some time traveling, and visit our grandchildren as often as their parents would allow us to. 

Are you a planner? Maybe you are one of those people that has a to-do list, sticks tightly to a budget, has/had a 5, 10, 25, and/or 50 year financial plan. You prepare daily itineraries way in advance, broken down to the hour, whenever you go on vacation. I've never been a person disciplined enough to do all that. At least not to the degree that people that have "planner" in their job titles recommend that you do.

The hurricane:

It wasn't supposed to hit here. When I went to bed after watching the Weather Channel's coverage of Hurricane Helene, I was concerned for the friends and the family of family that live in and around Atlanta. We live 150 miles east of downtown Atlanta. We really had nothing to be concerned about except more rain that would be dumped on top of the excessive rainfall that we had already experienced that week. But, around 3:30am, I was awakened to discover that the hurricane not only didn't go to Atlanta; I realized it had come our way and was making a direct hit on our area. By later that morning it was clear that our whole area was devastated by wind speeds upwards of 100 mph.. Everyone lost power. Some lost water, some lost cell service, some lost lots of trees, some lost their roofs and cars. Some lost their whole house. Some lost their lives. We were fortunate. No home damage. After 3 days with no power and temperatures climbing into the very uncomfortable range with no prospect of power being restored anytime soon, I decided that we needed to evacuate. Our daughter and her family live in Mobile, AL. That's where we were going to go.

I hadn't planned having to evacuate from a hurricane's aftermath living this far from the Gulf of Mexico and the Atlantic Ocean.

The hospital:

I knew that a 7-8 hour drive was going to take some toll on Carol. Traveling is difficult for her these days. But, I knew, once we got to Mobile, that some normalcy would be restored. Electricity, air conditioning, fresh food in a working refrigerator, hot water for bathing, loving family around us. Our son and his family's situation in Asheville, NC was even more dire. The massive flooding tried to wash away the entirety of Western NC. And much of it was washed away. And a lot of people died. They decided that they too needed to evacuate to Mobile. They were going to arrive the day after we did. I was excited for the opportunity to have all of our little family together. That was the plan.

I didn't expect to have to call 911. I knew 24 hours after we arrived that something was very wrong. Carol was listless and, by late afternoon, wasn't able to even stand with help. So, I called 911. The paramedics arrived around 6:30pm and in short order got her to the Emergency Room. I arrived there shortly after the ambulance and took care of all the registration requirements. It was almost an hour before they finally escorted me to the ER room where she was. After blood work and CT scans and who knows what else, they suspected that she had a nasty blood infection. Emergency Rooms have to triage patients in order to prioritize their resources and activity. People that have life-threatening issues take priority for understandable reasons. I've told people that unless you've been shot, stabbed, or have overdosed, the ER at nighttime is no place to be. But here we were.

At 3am they finally moved her up 11 floors to a room.

I hadn't planned for her (and me) to spend the next 13 days in the hospital. We were supposed to be enjoying our hurricane evacuation and our family mini-reunion.

Hospice:

The plan prior to her hospital discharge was for her to spend a week or two or three in a rehab facility to get some PT to help her regain her mobility and strength. And maybe gain back some of the 10 lbs. she lost. I even filled out all the paperwork at a rehab/ nursing home in Mobile. It was the best of the very few places that even had a bed available. But, as the discharge day approached, I was nagged by the thought that this was not what I needed to do. I had reservations about the facility, despite all appearances during my tour, that it seemed... adequate. I prayed for discernment to make the best decision for Carol. The day prior to discharge, I advised the hospital that we were not, in fact, going to discharge her to rehab; we were going to discharge her to my car. And I was immediately going to drive her home where she belonged. (By then, the power at our home had been restored.)

Once home and after a follow up visit with her primary care physician, we decided, given where she was in her dementia progression, it was time to bring in hospice to help me care for her.

I think planning is a good and appropriate thing for responsible adults to do. But, as we all know, our ability to plan for things in ways that give us confidence that we have control over outcomes often leaves us... disappointed. Or worse.

I certainly never planned to be hit by a hurricane. Nor did I plan for a 2-week hospital stay. I also didn't plan to need hospice care for the love of my life... at least not right now.

We had planned (maybe dreamed is the appropriate word) that our retirement years would look very different than they have actually looked. But, life happens. Priorities change. And plans change. So many of you that are reading this understand because you have had your own change-of-plan experiences that have rocked you to your core.

When we can't control, we are required to trust. So that's what I do. It is what God wants me to do.

But I also give thanks. My life with Carol has been a blessing beyond my wildest plans and dreams.

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Help!

 

My collection of Beatles' albums on vinyl isn't as extensive as I'd like. Most of my albums are the earlier ones, purchased in the mid-60s. I don't regret that at all though. In 1965, the Beatles released their 5th album, "Help!" In the UK, it was released on Parlophone Records with 14 song tracks. Unfortunately, I purchased the North America released "Help!" movie soundtrack album (photo of my album cover above) on Capitol records which did not contain all 14 songs from the original album but did contain some other tracks that were in the movie.

Most songs do not begin with the song title as the very first thing you hear when the song begins. But "Help!" does just that. I find that very appropriate.

I like everything about the song. It gets straight to the point. It's pretty simple like many of the Beatles' early songs. It has great instrumentation and harmonies.

But it also speaks some powerful truth. And it speaks to something many, if not most of us, have a hard time doing... asking for help.

From our earliest years as toddlers we yearn to become more and more independent. And parents of teenagers can give testimony to how that continual process brings challenges into family relationships. In Western culture, we are conditioned to not want to be seen as needing help except in the most innocuous or widely commonplace ways. From my experience and observation, men especially struggle with asking for help. It might partially explain some of the things we see occur all around us that can be dysfunctional on one end of the scale or can be fatal on the other. We see it frequently... somebody didn't seek out help or, if they did, they didn't receive what was needed.

We all need some help. I'm no different.

Those of you that read my amateur and infrequent blog know about my wife's dementia. I've shared in earlier blogs some of what that looks like and I've shared some PSA type info from our experience and my observations.

I've known for quite a while now that caregiving is hard and can grind you down. And, as disease progression continues, it gets even harder and can be more of a grind. Many of us that are providing care for a loved one know that we need help but, like me, many of us keep putting it off for any number of reasons. One reason is the hesitation to admit that we can't do it all ourselves. We can be uncomfortable asking for help.

The lyrics to the Beatles' song go like this:

"(Help) I need somebody

(Help) Not just anybody

(Help) You know I need someone

Help."

Those were the words that I kept postponing.

But, no more.

Two weeks ago I hired a caregiver to give me some much needed... help.

And, after entering our 3rd week, I'm dumbfounded that I waited so long.

Joanne is wonderful and is exactly the "somebody" that isn't just "anybody" but, she is exactly who I (and Carol) needed.

We all need some help. Ask for it or go get it.

Help! lyrics © Kobalt Music Publishing Ltd., Sony/ATV Music Publishing LLC

Listen to "Help" on YouTube

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I don't have the words

"I don't have the words"

If you are any kind of a sports fan, you've witnessed something like this. After the championship football game, the sideline reporter grabs the quarterback or other star player of the winning team and asks them what this win means to them. And the next thing you sometimes hear is, "I don't have the words."

It's true. We have moments in our lives when something we experience leaves us... speechless. We are unable to articulate, in that moment, what we are feeling. We say things like, "words fail me." We imply that our vocabulary is inadequate to give a proper description or account of something that is incredibly special or moving. It's not that we have an inadequate vocabulary; it is usually just a case of emotion temporarily overwhelming our communication skill... we can't find the words.

When we were very young, our vocabularies were quite limited. I fondly remember learning new vocabulary words in elementary school. As we grew older, through learning and experience, our vocabularies expanded giving us the database for our written and verbal skills. And it is common knowledge that reading is one of the most powerful ways for children (and adults) to be exposed to and retain vocabulary words. It is believed that an average 20-year old's vocabulary is 42,000 lexemes. (Sit, sits, sat, sitting are 4 words but they are forms of the same lexeme.)

So, having or not having words can be an issue of education/ breadth of vocabulary, a matter of articulation skill or lack thereof, a function of our current emotional state and/or preparedness, or any number of other factors.

All of these words and our ability to hear them, our knowledge of how to read them, and arrange them in such a way that allows us to understand and to express ourselves, reside in multiple regions in our brain. Psychologists and neuroscientists refer to the "language center" to encompass the various parts of the brain that collectively allow us to process language. And it's not just the words we hear, see, and speak. Our very thoughts and ideas are comprised of words/ language. Language is also an essential part of our working memory and cognitive capability.

Almost 8 years ago my wife began to have some struggles with normal communication. She was specifically having trouble with word-finding. When she would get hung up she'd say, "I can't get my words out" and that eventually progressed to "I don't have the words." After a multitude of tests and one very long neuropsychological examination, she was diagnosed with aphasia. And her aphasia was connected to cognitive, memory, and even some early motor issues (apraxia.)  In a nutshell... dementia.

Dementia isn't really a disease in and of itself and not all dementias are the same.

Dementia is a brain condition caused by an underlying disease such as Alzheimer's or other diseases like Parkinson's, or vascular disease, or primary progressive aphasia, to name a few. We often think of dementia as primarily memory loss but it involves so many other things.

In Carol's case, the primary areas of her brain that are damaged and are shrinking are the frontal and temporal areas. Eventually the damage will move deeper into areas of the brain that control some pretty important functional parts of the body.

Over the last 8 years, we have moved from "I don't have the words" (which are themselves spoken words in a sentence) to very few words spoken at all. I frequently wonder what her thoughts are. Or if she can still pray silently. I wonder if there is any communication in her dreams. I like to think that there's more going on in her head and it just isn't being made known to all of us.

And, despite this terrible road she has been on, she's the same sweet Carol I've known for nearly 42 years

And how much does she mean to me? 

I don't have the words.

Disclaimer: I don't profess to be a doctor, scientist, or expert and therefore what I have written may not perfectly describe the subject matter. I've written what my understanding is from my own observations and research these last few years. Some of it may be a bit inaccurate but, I'm not trying to write a medical abstract. I'm just sharing my opinions and thoughts. Look, I'm just a husband. (But I did stay at a Holiday Inn Express once.)

Some of you may feel that I am oversharing about my wife's illness. I will respond this way. I am finding that expressing my thoughts about this journey is therapeutic for me. I'm not much for journaling so this has become my outlet to write some thoughts down. And maybe this is informative for at least some of you. So, if that's OK, I'll continue sharing my thoughts until I no longer want to or am no longer able. I'm encouraged that we finally speak very openly about conditions affecting women's ta-tas and men's prostates but, we seem to shrink to only whispers in secret when it comes to maladies of and injuries to the brain. We shouldn't feel constrained about talking about this subject. So many people and families are affected by it.

Thanks for reading.

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Broken Toys

 

Carol and I were up in Asheville a few weekends ago to visit with our son, his wife, and their adorable 16-month old son (or as we like to say, our adorable grandson.) Asheville has been one of our favorite places for many years, long before they ever moved there... in fact, long before our kids were even born. While there, they took us over to the River Arts District to walk through Marquee, which is a large artist's gallery/ antique mall. 

In one of the booths there was an old bicycle, probably from the 40s or 50s. I remember thinking that somebody must have decided long ago that this bike had value and, rather than just sending it to the junkpile, they kept it for all these years. Somebody found or bought it, cleaned it up a bit, and put a price tag on it that is many times more than what the bike sold for when it was brand new. I shared with Carol that, when I was a boy, my 3-year older brother had an old Rollfast brand bike which, well worn and largely beaten up, eventually got handed down to me and I promptly beat it up some more. It finally got replaced several years later when I purchased, with money I had earned one summer mowing lawns, a brand new Schwinn Varsity 10-speed. 

Rollfast

Both that old Rollfast and my Schwinn would probably be worth a lot now despite the fact that they were both well worn by the time I was done with them. I started to think about all the toys in my childhood that ended up discarded... considered to have no more value.

In 1991, I went on a mission trip to Panama to help construct a church building to replace an old raggedy tent they had been using for worship. It was shortly after Christmas (the dry season) and there were dozens of kids around the church site because that time of year was like their summer vacation from school. I remember one kid playing with some sort of stick toy for hours on end. When I finally went over to talk with him I got a closer look at his "toy." Picture a wooden stick with the cardboard insert of a toilet paper roll glued on the end and then a feather glued to the cardboard tube. (I asked AI to make me a picture from my description... see below)

AI's interpretation of it

At least that was all that remained of what his parents originally made for him as his Christmas toy. From a distance, I had been amazed watching him play with it for hours. I was humbled deeply when I saw up close what most of us would consider a sad, useless bunch of trash glued together. Despite its current condition, this "broken toy" was still very valuable in this sweet boy's eyes. He could not have been more proud of that toy. After all, it was a gift. But most of us don't have the same attitude as that little boy.

I think sometimes our attitude towards people can be similar to how we think about broken toys. Broken toys are no longer useful, right? But what about broken people?

People that battle with alcohol or drug addiction. Steer clear of these people. They're not worth the effort. Talk about broken.

People that have failed. Failed in school, failed in business, failed in marriage. Failures. Failure may be contagious. Ease away from these unsuccessful folks.

People that are struggling and their struggles make us feel too uncomfortable. Debilitating physical illness, mental health challenges, terminal disease, ambulatory problems. These toys are no fun to play with anymore. I mean, they don't even work right. Let's just play with the unbroken ones.

We live in a disposable world. In many cases, that disposability makes things easier and more convenient. I think some of that disposability has carried over into other parts of our lives, our relationships, and our society in general. Disposing of people can also be easier and more convenient rather than showing them that they still matter and have worth to us. 

People shouldn't be disposable or forgotten. Even the broken ones.

Maybe especially the broken ones. Broken toys still have value.

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How Do You Eat An Elephant?

We all know the answer to this one.

You eat an elephant one bite at a time.

Have you ever thought about the different techniques that are used to eat some of the more common foods that we consume without knife, fork, or spoon?

I need you to get your mind's eye in focus here. One at a time, I want you to picture how you hold and then eat these common food items below. Think about your fingers/ hand(s) position, how you grasp it, and your "attack angle" to take a bite.

• A hard shell taco (although a true Mexican taco is always soft, flour tortilla)
• A hot dog with chili and slaw
• A large slice of NY style pizza
• A big, juicy, gourmet hamburger
• A double scoop ice cream cone
• Buffalo wings
• Ribs
• Corn on the cob

I recently saw a graphic that illustrated the correct way to eat a taco... grasp from the top, holding at the center of gravity of the taco, taco in alignment with mouth, head angled 45 degrees, and go for it. Sounds about right to me. Oh, and pray the corn tortilla doesn't shatter into a dozen pieces.

My experience eating a hot dog (especially one with many toppings) is an underneath grip (two hands initially,) hot dog/bun perpendicular to your face and level with the ground.... mouth wide open, straight in.

Now, the NY style (let's call it "floppy") pizza has a couple of variations when eating. There is the fold-in-half-method, folding from the mid-line of the crust to the point, thus eliminating the floppiness and even allowing it to be eaten one-handed. And there is also the two-handed non-folded method; crust held by the fingers of one hand, and pointed end supported by the fingers of the other hand (or even the back of the fingers of the other hand.)

The bigger the hamburger and the greater the toppings, the more challenging it is to eat without making a complete mess. But, it clearly is a two-handed method with solid grips with thumbs and fingers at 3:30 and 8:30.

Ice cream-in-a-cone eating includes the straight-up lick method, the more sideways lick while twirling method, and the psycho biting method. This is not an exhaustive list of methods by any means.

The ones I've listed above that have a similar holding technique are the chicken wing, rib, and corn on the cob. On the other hand, I've seen an entire chicken wing (flat or drum) placed in the mouth and pulled back out while the teeth scrape everything off leaving only bone/ joint. Never saw anyone do that with a baby back rib or corn on the cobb.

I was having lunch the other day with a friend and we were talking about how infrequently Carol and I go out to eat these days. With her dementia, she has started to lose the ability to navigate the eating process. She still does fairly well at home with a fork and spoon provided I've pre-cut things into bite-size pieces. And while introducing more finger type foods is generally the migration for folks with dementia that can still feed themselves, not all finger foods are truly "finger" foods. Chicken nuggets, French fries, cut up raw vegetable/ fruit or other food items that are easy to hold and are one or two-bite items are what I now consider finger foods. (Some of the finger foods aren't things you want to eat too frequently though.)

Sandwiches that can easily fall apart (i.e. a Jersey Mike's sub or a BLT, etc.) are too difficult and frustrating for her. So now I prepare sandwiches with "sticky" ingredients that can hold the sandwich together like peanut butter, pimiento cheese, grilled cheese, chicken salad, etc.

The other day we had chili slaw dogs. Mine were prepared the normal way. Hers I "deconstructed" and cut the bun and hot dog into bite-size pieces. Then I layered on some mustard, chili, and slaw and she was able to eat it fairly successfully with a fork. It looked like a mess on her plate but, she loved it and ate it all. Where there's a will, there's a way.

Those of you that have raised kids and helped them learn how to eat have an understanding of what I'm talking about. It's just that, in many ways, we are moving in reverse.

Navigating Dementialand and all that comes with it is sorta like eating an elephant.

We're just taking it one bite at a time.

*I'm sure some of you reading this have experience taking care of a loved one with Alzheimer's disease or other form of dementia and what I've shared is familiar to you. For others, I share this for no other reason than to give you a better understanding. You can better appreciate why we and others in our situation no longer participate in most social events.

I'm no expert on dementia but, to the extent I can be helpful to others that are new to this, please feel free to reach out if I can provide some guidance or encouragement.

Remember... one bite at a time.