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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Yard shoes

still some life in them

 

Some of you might be the type that have shoes or boots that you bought brand-new for purposes of wearing when you are outdoors gardening or doing yard work. For many others of us, we're probably wearing "yard shoes." At least that's what I call them. Repurposed, old shoes.

It might be a pair of old sneakers that, at one time, were the "nice pair." These were the new athletic shoes (aka sneakers, tennis shoes, kicks, running shoes) that, at one time, were worthy of being worn out in public. If you paid enough and they were the right brand and style, you proudly showed them off. And you were very careful about where and when you wore them in order to keep them looking pristine.

In my case, the shoes above were never particularly special even when new. These so-called boat or deck shoes were on sale at Cabela's for $29.95 (regularly priced at $59.95.) Yeah, I'm sorta cheap. But, I've been a fan of the Sperry Topsider style shoes for a long time. And I'm not even a boat guy. So, they started out, about 4-5 years ago, looking like this:

But, you know, life is hard on shoes. Or maybe I'm just hard on them. Even trying to be careful not to let the shoes get dirty or scratched, it eventually happens. Over time, the shoes just start to get worn down and no longer look new. So, my new "I can wear these most anywhere" shoes, got relegated to the 2nd tier of shoe-dom. Now they have become Saturday-only shoes. You know, something you wear when you are running to Lowes, Home Depot, or to the gardening center. You might even wear them for a quick trip to the grocery store hoping you don't run into anyone you know since your shoes aren't exactly in the best shape.

Then, while wearing these "still sorta ok to wear in public" shoes, you notice something outside that needs cleaning up and you forget to change into your "ok to get messy" previous gen yard shoes first. And before you realize, you've spilled something, stepped into something, or some other non-recoverable accident occurs that renders the shoes no-longer-worthy-of-public-display.

And this is how we get "yard shoes." Once they become yard shoes, anything is fair game, as proven from the picture at the top of the page. Now they are 100% utilitarian (if that.) It no longer matters one bit how bad they look. They now serve only one purpose: to not be barefoot while out in the yard, garden, or driveway.

The temptation for analogy here is very strong. Prior to writing this nonsense, I conjured up all kinds of ideas about the life-cycle of shoes and how that may apply to life.

But, I resisted. I'll just let you ponder the possible lessons that might be applicable.

Hey, can we talk about that sweat-stained, salt-encrusted Brave's cap that you now only wear at home? Or that comfortable, raggedy pair of sweats you ladies own that never gets seen by another human except those that live in your house?

We all have something like this.

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Seasons

When you see the word seasons, my guess is that your immediate thought goes to the seasons that the earth experiences due to its axis tilt and orbit around the sun... winter solstice, spring equinox, summer solstice and autumn equinox. Most of us have a favorite season. And it seems that no matter which season we are in, we get tired of it and want the next season to arrive. Spring is beautiful but... I'm ready for the beach and swimming. Autumn is great but enough already... let's get on with winter so that we can see some snow and go skiing. We never seem to be satisfied.

But there are a host of other things that exist for a period of time that can best be described as a season:

College football season, prom season, pollen season, bow season (deer hunting,) mating season, peak travel season, bathing suit season, ski season, baseball season, flu season... I think you get my drift. 

The bible also mentions seasons. One passage in particular can be found in the Book of Ecclesiastes. In Chapter 3:1-8 it says (in the King James translation:)

"To every thing there is a season, and a time to every purpose under heaven:

A time to be born, and a time to die; a time to plant, and a time to pluck up that which was planted;

A time to kill, and a time to heal; a time to break down, and a time to build up;

A time to weep, and a time to laugh; a time to mourn, and a time to dance;

A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;

A time to get, and a time to lose; a time to keep, and a time to cast away;

A time to rend, and a time to sew; a time to keep silence, and a time to speak;

A time to love, and a time to hate; a time of war, and a time of peace."

Tradition holds that Ecclesiastes was written by King Solomon, however, many commentators and historians suggest a different author. Regardless of which very wise person wrote it, you must acknowledge the obvious truth found in those 8 verses. We don't necessarily like all the truths found in those words because they describe contrasting realities; some that we like, some that we don't.

We enjoy the seasons of life that go in accordance to our wishes, desires, and plans. We enjoy, more than others, certain seasons of our children's childhoods. People say things like, "enjoy this phase of their life because, before you know it, they will be grown."

In our careers we experience seasons... seasons of growth and promotion, seasons of raises and being an influencer, seasons of being highly valued and impactful. But, after enough time, things can change and not necessarily for the better.

A friend and I were sorta talking about this topic the other day. We are both old guys but remember when our opinions and influence in a certain domain were respected and requested. But now it is no longer our time to be the influencers, change makers, or decision-makers. That time has now passed to another generation of influencers and decision-makers... as it should be. And we need to be OK with that. A time to influence and a time to be influenced.

(I'm the bald one)

An interesting (at least to me) coincidence occurred in the last two days. I was looking on my old laptop yesterday for a Word document and, in doing so, came across a letter I had written in November 2012 to our then senior pastor. In it, I acknowledged the many changes that our church was wrestling with and the dissatisfaction with the way things were that I sensed was swirling around. I was the worship leader in our contemporary service at the time and had been in that role for 7 years. I had prayed and been sensing that it might be time for me to step aside and let someone else take over the duties of worship leader. So I offered to resign. My sense was obviously correct as my resignation was immediately accepted. I did agree to stay on until a new worship leader could be found, which took until April 2015 to accomplish. The coincidence was that today, a Facebook Memory from 9 years ago popped up that showed pictures of me and the praise team from my last Sunday leading worship... April 22, 2015. My role leading worship was meant to only be for a season... not forever. A time to lead and a time to be led.

But, our instincts are to hold on for dear life to all the things we want not to change. We lament, "why can't things be like they used to be?" Or, in contrast, "when will this miserable time come to an end?"

Because, as the writer of Ecclesiastes tells us so eloquently and directly, life is a continual series of seasons and change. Some of those come back around and repeat like the earth's seasonal cycles (although never exactly the same.) But some seasons have a start and they have an end, never to be repeated. Some of those seasons will be the kinds we wish for while others will be seasons that we wish would just stop.

But we need to try to see God at work in all our seasons... seasons of great joy and seasons of lament and difficulty. Because He is there with us in all of them and there is something He desires to teach us through all our seasons. Even if it is just reminding us that He loves us and has everything under control.

To every thing there is a season.

And in the words of Pete Seeger: turn, turn, turn.

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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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Cheap? ...or just thrifty?

Stretch that thing

My parents were divorced in 1959. I wasn't even 4-years old. After the divorce, mom and we three kids moved in with my grandmother who, only a couple of years earlier, had become a widow. She operated a nursing home and it had an attached personal residence in the back. A nursing home would be where I called home for the next four years until my mother remarried and we moved away to Boston.

My grandmother was born in 1905. When the US stock market crashed in October 1929, marking the beginning of the Great Depression, she was newly married and soon to be pregnant with her first child (my mother.) My mother's earliest memories would have been ones overwhelmingly influenced by the brutal economic climate and the unimaginable social calamity of her earliest childhood years. Bread lines, unemployment, homelessness, and general malaise and hopelessness were the order of the day for millions of people. Fortunately, our family fared better than some.

There was a motto during those times: "Use it up, wear it out, make do, or do without." Frugality was required and it affected how most households operated. If you had any available greenspace, you planted a vegetable garden. Meals were dominated by one-pot varieties, casseroles, soups, lower-cost meals like macaroni and cheese, beans and franks, and creamed asparagus or chipped beef on toast. And you never wasted anything, especially food. It was considered sinful to waste food. 

By the time I came along in the mid-50s, I was living with two women that knew how to squeeze every drop out of every dollar spent. Most of my clothes had been my brother's a few years earlier. We never threw away any bread no matter how stale it became (mold was the determining factor, not freshness.) I remember smelling the milk (every time) before pouring it to check for the aroma of sourness. If I thought it was sour I'd tell my grandmother and she would say, "drink it... it's fine." She was right, of course. (But it really was becoming sour.)

I find it pretty funny that I still live, in many ways, with one foot in the depression-influenced environment in which I was raised and the life of plenty I have enjoyed most of my adult life.

I think nothing of spending $9 for a cup of coffee (w/ tip) from my favorite coffee shop but I still feel the urge to invert a virtually empty ketchup bottle directly on top of the newly opened one to get the last $0.26 worth of that Heinz goodness into the new bottle.

still some in there

You'd think it was frankincense from biblical times.

I don't think twice about buying a $200 DeWalt power tool that I may actually only use 3 times before that tool sees its first birthday... and yet, I still hesitate throwing out a jar of Better Than Bouillon in my refrigerator that has a "Best used by" date of 2022 (because I know it is still usable and won't kill anyone.)

My life straddles the world of encyclopedias and the AI driven search engines of 2024. I'm a guy that gets all my money's worth out of my Amazon Prime membership but still has the urge to wash out and re-use Ziplock bags (I don't though.) I am doing better.... you'll find no leftovers in margarine or Cool Whip containers (I can't write Cool Whip without hearing Stewie from Family Guy say Cool Hwip.)

We always seem to have and make good use of leftovers. "I can make a meal for us out of these leftovers from the last 3 days," I say. I feel so accomplished when we "clean out the fridge" like I have successfully taken all my scraps of cloth and made an heirloom quilt (I've never made a quilt, btw.)

So, my question is, am I cheap or am I just thrifty?

I think the answer is yes.

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Is This Really Living?

It is good, right?

There is a term that has been around since the 1950s called Activities of Daily Living... ADL. The term is used to describe the 6 most basic functional "skills" that adults should possess. They are:

• Ambulating- moving from point to point and walking independently
• Feeding- feeding yourself
• Dressing- choosing appropriate clothing and dressing yourself
• Personal hygiene- bathing, grooming, maintaining your dental hygiene, nails and hair
• Continence- controlling your bladder and bowel function
• Toileting- getting to and from the toilet and "tidying up" afterwards

According to the National Institute of Health, there is also a list of "Instrumental" ADLs. These are:

• Transportation and shopping
• Managing finances
• Shopping and meal preparation (shopping is evidently important)
• Housecleaning and home maintenance
• Managing communication with others
• Managing medications

I can't help but stay focused on the term "daily living." I know these described capabilities are primarily used to assess the degree to which adults may or may not need to be dependent on someone else to navigate pretty basic but necessary things. (I am intimately familiar with all of this these days.) And I don't really have a better description to offer to what they call "daily living." But there has to be more to daily living than the 6 basics and 6 bonus items above, right? I mean, wouldn't this be better described as "daily existing?" Is what's listed above... really living?

I vaguely remember my high school psychology class but I do remember reading about Maslow's Hierarchy of Needs. It was like the food pyramid only completely different. I know I need nuts, grains, and vegetables but, according to Maslow,  I also need intimate relationships and self actualization, among other things.

Source: Chiquo, CC BY-SA 4.0 via Wikimedia Commons

So, if I have all these needed things, does that mean that I am truly living? Or am I just surviving, or existing, or is there some other basal term that is appropriate?

There has to be more to life than food, and shelter, and toileting, and shopping, and holding a fork, and being creative, and balancing a checkbook, right? I realize my question smacks of a myopic, first-world interrogatory but, my question remains nonetheless.

Isn't there more to life than having these core needs met?

Maybe the bible can help me out here. I'm not looking to merely get by, to only navigate from one day to the next until death us do part. So, I went looking to see what scripture says about life's intention. Well, as it turns out, there is a whole lot to be found there about how we should live our life and what our expectations can be in doing so. In fact, there is so much there that this blog won't remotely be able to do it justice. But one verse in particular stands out.

Jesus is answering the Pharisees in John chapter 10 (Jesus had just healed a man who was born blind and the Pharisees were fixated on his potential rule breaking and the reason for the man's blindness rather than the miracle Jesus had just performed.) In Chapter 10, Jesus explains why He came and uses the metaphorical image of being the Good Shepherd. The shepherd would lay down his life for his sheep. His sheep know him and know him so well that they can pick out his voice above all the noisy voices that might surround them. And then Jesus says this at the end of verse 10 (I'm quoting from the New American Standard version because this was my very first bible... given to me by my wife.) "...I came so that they may have life, and have it abundantly." (emphasis mine) Now that sounds better than activities and needs.

The Greek word used for abundant is περισσὸν (perissos) and Barnes' Notes on the Bible commentary translates it this way:

"Literally, that they may have abundance, or that which abounds. The word denotes that which is not absolutely essential to life, but which is superadded to make life happy. They shall not merely have life – simple, bare existence – but they shall have all those superadded things which are needful to make that life eminently blessed and happy.”

Thayer's Greek Lexicon defines perissos/ abundant as: "over and above, more than is necessary, superadded"

With all due respect to Sidney Katz' ADLs and Maslow's pyramid of needs, I'm pretty sure I want an abundant life. 

I want what Jesus is offering. I don't want to just get by day-by-day. And I'm not talking about material things or what the world would say is an abundant life. I want to live life with a different perspective and a different priority. I want what my Creator intended for me.

And that's why I have been a Jesus follower since 1984. And He is faithful.

Carol and I could not navigate our "daily living" without Him.

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New American Standard Bible Copyright© 1960 - 2020 by The Lockman Foundation.

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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It Changed My Life

You will sometimes hear people talk about something being "life changing." I've heard folks describe everything from their air fryer to an incredible travel experience to the birth of a child in that way. (Some of you might be a bit overly obsessed with your kitchen appliance.)

Seriously describing something as life changing typically suggests something significant. And it's not always something positive. The death of a spouse, child, or other close person in your life can certainly have that effect too. So when I say that something "changed my life" I am not using the more flippant version of that term.

February 9th- 41 years ago Carol and I were married. Nothing fancy about the ceremony. We did get dressed up a bit. But, short of getting married in front of a justice of the peace, it was as simple as a wedding could be... we were married by her former youth minister in my future in-laws' living room with barely enough people there to field a baseball team. But, the unadorned nature of the occasion did not, in any way, diminish the seriousness and holiness of the moment.

Almost six years earlier, in my fancy, rented tuxedo, I had recited vows to a different woman in front of an adorned church full of people. That marriage should have "changed my life." But it didn't. And it didn't change hers either. Maybe that is why, four years later, that marriage failed. And I felt like a failure. And a promise breaker, regardless of the fact that I didn't want the divorce. But, there is truth in the words in Bonnie Raitt's 1990 recording:

 "I can't make you love me if you don't. I can't make your heart feel something it won't." 

I painfully learned that truth ten years before Michael Reid and James Shamblin ever wrote those lyrics.

But, a little over two years later, I met Carol with marriage being the furthest thing from my mind. I was enjoying (for the most part) living the life of a bachelor. But, while I was stubbornly having a very good time, looking back, it's obvious that I wasn't being a very good version of me.

But, marrying Carol just a short five months after our first date, changed my life. Maybe she saw potential in what was a pretty broken person. (Then again, maybe I had just totally faked her out.) Regardless, because of the person she is, she allowed me to see that there was a much better version of me possible. She was patient with my insecurities. She was the encouragement that I sorely needed. She was steadfast in her faith which was truly my first best glimpse of Jesus. (That's a life changing story for another day.) Her example; how she loved, how she cared, and how she treated others was inspiring to me. I saw in her the kind of person I hoped I could be one day. And I wanted to be the husband she deserved.

She changed my heart.

I'm not suggesting that Carol is perfect. But she was (and is) perfect for me. I got a lot of things wrong in our early years (hmmmm and maybe a few of those middle ones too.) But we persevered. We hung in there through some difficult times and there was no shortage of them back then and even now. And during and through all of that, having Carol as my wife changed my life. And it was a life that needed changing. I think maybe all of us need some life changing; otherwise, how do we ever grow? Having our two beautiful children was another life changing experience; but, that too is a blog for another day.

This one's about Carol.

So here we are... 41 years later. Neither of us the same people we were in 1983. We became better versions of ourselves, I think.

I'm pretty confident marriage is supposed to be life changing. I'm grateful that it was and is for me.

Happy anniversary sweetie. I love you forever.

Us... over the years

"I Can't Make You Love Me"

Writers: James Allen Shamblin, Michael Barry Reid
Publisher: AMPLIFIED ADMINISTRATION, Universal Music Publishing Group

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Simple Pleasures

Ain't that the truth

 

Today, we took a leisurely, 30-minute drive to Edgefield, SC, the seat of the mostly rural county where we live. It's a nice drive. There is a butcher shop there where I like to buy some of our meat. I like it because it is a small town, family-owned business. They are friendly, have good quality meat, and the prices are pretty good. We didn't go to the butcher shop today. My freezer's full.

We've never been fancy people. Neither of us grew up that way. And even while having a relatively successful, good paying career, we pretty much stuck to our pretty modest lifestyle. No fancy houses, clothes, or cars. We've done some traveling. Carol and I have cruised the Caribbean, vacationed in the Virgin Islands, skied in Colorado, spent time in San Francisco, San Diego, Dallas, Phoenix/Sedona/Flagstaff/Grand Canyon, Orlando, Miami, Niagara Falls, and most of New England, among other places. We've been to Israel, Italy, and Korea together. Most of our vacations have been by car to destinations within 4-6 hours of our house (some of my favorite family times.) Our kids spent a lot of their childhood vacation time in our car but, also had a few airline vacations.

Kaya, our 15-year old black lab mix, has always loved riding in the car. I drive an old Tahoe so, with the back seats down she has plenty of room in the back. I put her dog bed back there along with a non-spill water bowl and off we go.

During one of my butcher shop trips a while back, Carol and Kaya came along. There is a McDonald's across the street from the butcher shop so, after putting my purchase in the cooler, we went through the drive-thru. Carol always gets a kid's meal because she eats like a bird, I usually get 2 cheeseburgers, and I ordered a plain hamburger for Kaya. Then we drove downtown to see if there was a parking space on Edgefield's very simple, but pretty square.

It was a beautiful, sunny, warm-but-not-hot day, We parked, rolled down the windows (actually I just used the buttons,) and settled in for our fancy meal. I took Kaya's plain burger around to the back, raised the lift gate, and pulled apart the bun and hamburger patty into her travel food bowl. She gobbled it up about as fast as I could break it apart. She was so happy.

Ever since that first time, anytime I've needed to go to the butcher, Carol and Kaya have ridden with me and we do our meal-in-the-car-on-the-square-thing. In December we ate our gourmet food while listening to Christmas carols that were playing outside (we live in the south... still warm enough to have the windows at least partially down.)

If you read my last post, (click here) you know that I'm taking Kaya to the vet this week (Thursday) because it is time for her to rejoin her sister, Maddie who we said goodbye to in 2022.

And if you read my two posts prior to that one, (click here) you also know what's going on with Carol's health.

So, today, I decided that we needed to have our McDonald's-on-the-square experience with sweet Kaya one more time. And Kaya isn't the only one that enjoys that simple pleasure. It's very enjoyable for Carol so... that's what we do.

Never take simple pleasures for granted. Because they are the best ones.

You'll Know When It's Time

Kaya (left) and Maddie (right) a few years back

You'll know when it is time. Really? I'll know?

That's what the gal at the vet said the last time I was in there last fall when I asked when it will be time to bring our dog back in... for the last time.

We've had Kaya, our black lab mix, since spring of 2009. Our son had brought her home from college one weekend because a friend at school had been fostering Kaya (her name was Maggie then) but, she had to go out of town. She asked Michael if he could take care of her that weekend.

So, he brought her home from college to spend a weekend with us.

Lucy

A couple of years earlier, we had said goodbye to Lucy, the dog that both our kids had grown up with. The way we loved that dog caused one of Jessica's friends to say, "the Toomeys are obsessed with their dog." She was right. But, after Lucy got sick and had to be put to sleep, I said, "no more... no more dogs. I can't go through this again."

But, we love dogs. And we immediately fell in love with Kaya that weekend... this rambunctious puppy that was only a few months old. She was available for adoption so, we made her part of the family.

I could write 10 more blogs about our experiences with Kaya but, I will spare you. For now.

Dogs of Kaya's size and breed don't usually live to be this old. Lucy, a shepherd mix, died at around 12 and had been sick for a while prior to that.

In July 2022, I had to take Maddie to the vet because her back end had given out and she was in obvious pain. We had adopted Maddie not too long after we adopted Kaya so that Kaya could have a companion. That was a hard day at the vet. I cried all the way home and then some.

But now I have to make a decision about Kaya. She just had her 15th birthday. I won't get into her current health issues but, our vet agrees that surgical intervention for the most obvious issue (there is more than one) is probably unwise given her age and her likely diagnosis. Let her enjoy her remaining time, he suggested.

So, how will I know that it is time? I wish dogs could verbally communicate. I could ask her if she was in pain. Maybe she could tell me that she is ready to go.

Michael & family are coming here this weekend. It's going to be his opportunity to say goodbye to this sweet girl that he brought home to us and has been a part of our lives for almost 15 years.

I'm going to call the vet next week. Putting this off is selfish on my part because I just don't want to say goodbye... again.

I know it's time.