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Lewy Body Dementia: One Day at a Time

Our story unfolds

Each New Day…

london chris and art

Time marches on, and with it goes my husband’s sense of independence; a crushing blow to a once vital, strong-willed, capable man. His male ego shattered beyond repair almost daily, leaving him defenseless and vulnerable to life’s newly minted, unforgiving and debilitating challenges. His emotions run the gamut on any given day-from confused, to angry, to devastated, all because even the simplest of tasks pose an insurmountable burden. There are days when holding a fork does nothing to help the food make it to his yearning mouth. Even the special weighted utensils do little to assist with this frustratingly laborious effort. Most days walking proves to be at best a disconcerting pursuit of shuffling and imbalance; at worst, a bitter exercise in the rigidity of his limbs, resulting in treacherous crashing to the ground, giving credence to the futility of his legs as compared to what they once were.

There are days when he is shall I say…unpleasant.  LBD takes the person and assaults the brain, in every direction, a type of rogue proteins, going after the individual and transforming him into someone unrecognizable behavior-wise (aside from the physical aspects). When this occurs, he is a shadow of his former self, in practically every way imaginable. But YOU, the outsider, not the caregiver, will rarely see this side of him. To you, he does what is commonly referred to as “showtime”. The LBD patient has the uncanny ability to whip himself into shape for others,  not wanting to seem altered in anyway to the outside world. I saw this just yesterday, when the carpenter doing work in our kitchen entered our home. Previous to that, Art sat at the kitchen table, head down, his countenance in a pained state, and his speech barely audible. When he was able to speak, he couldn’t find the right words to explain himself, causing him even more agitating anguish. He was clearly struggling. LBD was winning at that moment. Breakfast was barely touched, communication virtually nonexistent, and his movements were slow and shaky. As soon as the carpenter entered the home, Art perked up to unbelievable heights! He was full of banter, his once usual, familiar humor, sarcasm and wit  in full swing! The transformation was startling! Had you seen him two minutes prior you would have been astonished, or more accurately, dumbfounded!! It is after times like these when Art feels like he is somehow seriously “faking it” with regards to his LBD. But what happens when the outsider has left and we are once again alone in the house? He literally crashes and can do little for the next several hours, or depending upon the amount of time it took him to engage in the “showtime,” it could be days of sheer exhaustion and sleeping for more hours than he is awake.

Why am I sharing this unsightly, unpleasant look at my husband’s illness? Because as life moves forward, this is our new reality. You may not see it, but it’s always there, in the background, unsettling as it is. I do try to be positive, but there are days when it gets to me. Seeing pictures or videos of his former vibrant self breaks my heart, because I know that man will never return. When going through some things yesterday I ran across our pictures of our very first London trip. Over five years ago, the walking difficulties were evidenced by the cane, but his face exuded nothing of things to come. He was excited, often like a kid in a candy store, sharing the sights, sounds, and awe of our trip with childlike abandon. The photos reminded me of a new friend made (Danny), and the amazing day we enjoyed being shown around the city by this amiable, considerate Londoner (brother of a Medway friend-who suggested we look his brother up-though we never met this London lad). And of course none of this would have happened if it weren’t for my husband’s unabashed boldness and sense of undaunted adventure, knocking on the door of an suspecting guy in a foreign city, who had no earthly idea who we were, taking the poor bloke completely by surprise! But in typical Art fashion, he and Danny  were bantering in no time at all, trading quips and one liners, and indeed, a new friendship began that crazy day! That was classic Art! Never being afraid to chat up anyone, and always anticipating the best.

Memories are a funny thing for Art-he may not be able to tell you if he even ate breakfast, let alone what it was, but he could recall many details from our trip to London.  What I am discovering  these days are that new details are emerging from his LBD affected mind; memories from various trips seeping into others, assailing his reflections of vacations past, as they mingle together and create freshly altered remembrances. While this is not the end of the world, it is dolefully, just another phase of his illness that has invaded his reality.

But LBD is a roller coaster, and any symptom he experiences one day does not necessarily rear its ugly head on the next day. Or the next hour. Or the next minute. You just never know…for example, take dinner out the last night: Art had been hard at work most of the day sorting out “his” three drawers in the kitchen, a sightly disaster of years of collecting small items he couldn’t bring himself to toss out. Instead, he simply dumped everything he thought he should treasure into one of the three drawers. Now it was time to pay the piper, and clean them out and purge the easily forgotten (not because of LBD) possessions. He was totally spent by the end of the day, although much to his elated discovery was a $100 gift card, unbelievably set to expire in 2021! It was his idea to go to dinner (on this card), as we had been hard at work all day, also having taken care of two of our four grandkids that afternoon. So off we went to a favorite local eatery. I was wary taking him out, seemingly struggling to walk and make conversation by dinner time. But dining out is one of the things he truly enjoys, and after all the efforts of the day, I couldn’t deny him. So there we were, quietly sitting in the car as I pulled into the nearest handicapped parking spot to the restaurant. He slowly raised his head, hesitated a minute, and evenly declared, “I could even take my grandfather here.” With that pronouncement, I startlingly turn my head towards him, and meeting his sly gaze, I noticed some mirth in his expression. What on earth?? I am confused, wondering if LBD is advancing rapidly to take away his long-term memories too, as his grandfather is long dead-and then I get it. We are parked in a spot that says “Handicapped, van accessible”. He knows his grandfather is dead-the smirk and slyness in his expression is to make me think-his grandfather’s name was Van. I’ll just leave that there for you to think about. Needless to say, his wit was in tact. He was better than ok…he was Art.

So many of you have mentioned missing my blogposts lately, so I figured it was time to let you know how things are going here. We are plodding along, day to day, accepting all life has to throw at us as as best we can. So yes, I do get down at times. It is inevitable. As the holidays draw near, we are both excited to enjoy the day with many family and friends. We will have a houseful for Thanksgiving once again, and Art knows if he gets overwhelmed, he can simply go downstairs and paint, or take a nap. It is ok. But he wouldn’t miss this Thanksgiving for the world! Will he showtime? Probably, but it’s part of his LBD life and who he is now, and that’s ok. It is what it is, and if it makes him feel better…why not? He’ll bask in some much needed rest the next day. This Thanksgiving will no doubt prove to be a heralded walk down memory lane (whatever that will bring), as we share the day family and longtime friends from Thanksgivings past, as well as newer friends that we also hold dear to our hearts. For now, we are moving ahead, one day at a time, and pray that each new day will be a good one for all. Oh one more thing, remember that $100 gift card we planned to use for our lovely dinner date? It had already been redeemed!

London art jpg

Art in England, a little weary from a day of traveling.

London art and danny jpg

Art and  our new friend Danny, after our day touring London together.

 

 

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Dealing with life’s unexpected turn of events

I initially began writing this post two months ago, as a reflection on our 40th anniversary. But life happens, and alas, the post was neglected and forgotten. But so much has transpired since that day, that I am not sure where to begin or how much to share. Things are a bit of a blur, and truth be told, I am not sure of the dates anymore. Let me begin with with Art’s brothers in Texas.

Art has always tried to maintain a positive relationship with all of his brothers, being the only family member who moved away from the Houston area years ago. Thus,  keeping the connection to his extended family in Texas was vital to him. As with brothers, the bonds of love and devotion tend to render one set of siblings more tightly than the others. This closeness transcends to his brother Bobby, the brother closest to him in age. Bobby was a police officer for 35 years, and had recently been having significant health problems of his own. On a fateful day in late May, Bobby believed an intruder had entered his home. Sadly, Bobby shot and killed one of Art’s other brothers, also in law enforcement for a number of years (can you see where the media would seize upon this story?). In our heart of hearts, we believe it was a horrible accident. Sadly, while one brother was being laid  to rest, the other was being charged with his murder. Art was unable to communicate with Bobby for roughly two weeks throughout the initial stages of this horrendous ordeal. The daily pain and stress of not knowing what was happening to his beloved brother, not being able to talk to him, was sheer torture for Art. Not a day went by that we didn’t discuss the events that had taken place in Houston. it weighed heavily on his mind constantly. This entire scenario took a tremendous emotional toll on my husband.

Of course losing a brother is also a profoundly sorrowful experience, especially in the manner that occurred. Art chose not to attend Rocky’s funeral, as the media attention and his overall crumbling emotions were overwhelming at that time. Physically, it would have been a challenge of epic proportions, as traveling these days requires a male companion to help with various tasks related to his illness. No one was available to assist in this potentially arduous travel south. Emotionally, for a multitude of reasons, I just think such a trip would have destroyed him. Art was walking an emotional tightrope wire as it was, and I just couldn’t take the chance of allowing him to enter a potentially disastrous situation for his overall well being. There are times when making a tough decision may not be a popular one, but in this case, it was the right one. Our immediate family was united in this decision. So we remained at home. Our deepest sympathies were with Rocky’s wife and son on that crushingly mournful day.

In early June my niece Melanie graduated from high school, a happy diversion from the grievous events in Houston. We have always been close, so as a gift to Melanie we took her to one of our favorite places, the White Mountains of New Hampshire. We rented a cozy cottage on a serene lake, and meandered the spectacular towering mountains and pastoral valleys of the area, with a breathtaking awe that never ceases to astound us with its peace, tranquility, and beauty. We were happy to share this beloved area with our sweet Melanie. But our brief, uncomplicated three-day holiday quickly became a confusing, suddenly grueling, heart wrenching five day experience we’ll not likely to forget anytime soon. On the day we were to leave our quaint little cottage, Art began to suffer terrifying stroke-like symptoms. Against his will, and with Melanie backing me up, I brought Art to the tiny local 25 bed hospital in North Conway, New Hampshire. Art’s anger at me for bringing him to the hospital spilled over as we entered the E.R.: “I’ll bet you a million dollars we are in the waiting room for hours before being seen.” I took that bet. We were whisked away ASAP, never having to endure the waiting room of the busy E.R.! I am still waiting for that  million dollars to miraculously appear…

To make a long story short, Art was kept just short of 48 hours in the hospital. After much poking, prodding, and testing, we were sent packing with a diagnosis of a mini-stroke, commonly known as a Transient Ischemic Attack (TIA). Thankfully a TIA while incredibly disturbing and frightening to witness, does not leave lasting brain damage to its victims; hence, these are short-lived attacks mimicking a full-blown stoke without the residual permanent effects. We were ordered to see Art’s primary care physician, along with his neurologist at Massachusetts Hospital in Boston, immediately upon our return home. After the lengthy drive back,  we were exhausted, but comforted to be back in the welcoming, familiar surroundings of our own restful home.

Fast forward to recent events in July: Art has indeed been to all his doctors, with most concurring of the TIA diagnosis in NH.  There is nothing to be done but watch and be aware of its  potential to develop into a significant stroke, with residual,  detrimental consequences. As of today, Art’s cardiologist has been added to the mix with testing as well. For the next seven days Art will be wearing a portable heart monitor, which will translate all information directly to his cardiologist. Crazy little contraption, for sure, but truly amazing in reality! Art has two additional heart related tests to follow this seven day at home heart test, or “study”. Art has been suffering chest pains and palpations multiple times per week. Thus, an aggressive approach to this situation is warranted. While, all his doctors are doing their best to care for Art, his cardiologist is my unparalleled favorite; pointed, quick witted, and thorough, he leaves no stone unturned. His easy going, unobtrusive manner sets us both at ease immediately. But when he and Art get to bantering about his medical issues with Art’s lackluster responses to the doctor’s recommendations, it can be quite titillating! Yesterday’s visit was  no exception:

Cardiologist: “Have  you given any consideration to a vape (instead of smoking cigars)?”

Art, deadpan response: “Nope.” (followed by a long, hard, cold stare at the doctor.)

Cardiologist, undeterred: “Will you consider any alternatives to smoking and inhaling those cigars?”

Art, instantly replies without a moments hesitation: “A pine box.”

Cardiologist, abruptly and fervently declares: “THAT WILL HAPPEN.”

 

And so it goes with my often ornery, sometimes argumentative, at times witty and outrageously inappropriate, but much loved husband. He is living life on his own terms; however challenging he becomes, we will roll with the flow and accept his situation as it develops over the course of his evolving issues and  illness. Anything else would be pointless, lest we deny him life’s simple pleasures with whatever amounts of dignity he can muster in the face of adversity. Indeed, and so it goes.

Great day in N.H.
Art fishing by the lake
In the hospital

 

 

 

 

 

Our Changing Lives: a New Chapter

This winter has seen me, the caregiver, sick all too often. I have taken more days off from work than anticipated, had multiple doctor visits, blood work, and various testing. Some went well, some not so much…but I am basically fine. Like the Ever Ready bunny, I keep going. But sooner or later the pressures of juggling both home and work under the most taxing circumstances do catch up,  and that is exactly what happened to me. So after a thoughtful examination of our changing lives now, I have decided to leave the stresses of teaching early. I had already planned on retiring the end of June, when school let out, but in light of my health scare and Art’s ever changing status with his LBD, it was time to make the hard decision. So as of April 13, I will be ending my teaching career with a family leave of absence (officially known as FMLA).  When my students return to school after April vacation, someone else will be in charge of my classes. It feels strange to think of someone else taking over my desk, my room, my students. But that is exactly what will happen. It is time.

This week I began to tell my students, not wanting to alert them too early, and not wanting to leave it to the last day. Timing is everything. So Monday and Tuesday (rotating schedules, five different classes, grades five through eight), I cleverly put an idiom on the board for our opener: “Mixed emotions”. Students wrote out the opener, then brainstormed its potential meaning. Each class had at least one student who nailed the meaning, to which I followed up with my example. “It is with  mixed emotions that I tell you this is my last week of teaching at the Medway Middle School.” Initially the kids looked down, began to put pencil to paper, and then suddenly they stopped short. Within about 30 seconds all my students looked up at me with shocked, confused, and stunned  expressions; some with tears in their eyes, others pleading “What? Why?” Some simply stated, “NO! You can’t do this…who’s going to teach us? What if she is  mean? What if she doesn’t like us, what if she doesn’t understand us? (having smaller groups of students allows me the privilege of getting to know my students on a more personal level, while building strong bonds with them)…” and the barrage of questions ensued!

To say this has been an emotional roller coaster week would be an understatement. All of my students understand about the need to be with my husband as he struggles with his illness as things progress, and his needs become more formidable and demanding. These middle school students were thoughtful and gentle in their queries about Lewy Body Dementia and its ultimate ramifications. I answered them honestly, but equally as tender and considerate of their ages as I could, and was blown away by the extent of their merciful compassion towards me and my family by their understanding comments. These are middle schoolers-you know, the kids that often get a bad rap. These middle school years are often tough ones, and to see these young, innocent faces rise to a more accepting, mature level of caring and empathy, gave me the courage to come back and deal with each nostalgic day this last week. I will miss the kids, I will miss my colleagues; but mostly, I will be content to be where I belong in this next, new chapter: at home, with my husband with LBD.

Celebrating Love

Recently our church family celebrated Valentine’s Day with a lovely dinner out in the elegant surroundings of a charming Italian restaurant. We have enjoyed this dinner with friends, old and new, numerous times in the past. This night seemed special. Art’s spirit was lively and animated, as he anticipated the diverse crowd he would cleverly spring his wisecracks and jokes on. His Lewy Body Dementia fanned in the background as he contemplated the evening, while the mischievous spark in his spirit  hoped to prevail in its place.

Art has forgone big crowds with dinners out for the most part these days, as they tend to make him nervous and anxious, often leading to all kinds of unpleasantness for him. We did not even entertain the thought of attending this gathering last year. A few weeks ago Art broached the subject: “Do you want to go to the church’s Valentine’s Dinner? Last time we went I cleaned-up with prizes!” Indeed he did; with his wit, sarcasm,  and humor winning out again, literally winning…as he walked away that night two years ago with more prizes for his creative answers to questions than any other person there (even with LBD). Score!! Though the short term memory may be waning, that particular Valentine’s Day dinner never ceases to bring a smile to his normally stoic, often troubled face. So we contemplated the night’s offerings, and plunged ahead, not knowing what the day would bring for his body, emotions, memory, state of mind, balance….simply put, we went on faith that he would be able to enjoy an entertaining evening filled with warmth and laughter with a wonderful group of friends, old and new,  from our loving, supportive church family. We were not to be disappointed.

Thankfully our dear friends Burt and Pauline were our chauffeurs for the event, which meant I did not have to park and navigate Art through a bustling parking lot, especially considering this particular restaurant does not have great handicapped parking (trust me, I have the best handicapped parking for nearby restaurants well scoped out these days). We were dropped off at the front door-perfect! Once inside we were met with a barrage well dressed bodies to maneuver. The goal: find a spot  where Art could be safely out of the way and not feel too closed in by the masses. When things got too overwhelming waiting for the function room doors to open we were graciously  (and most appreciatively) allowed to sneak in and sit down a few minutes ahead of everyone else. Ah….breathing room with  no stress; It was peaceful and heavenly, allowing us time to regroup.

Now if you have never enjoyed a planned Valentine’s dinner event, it can be a bit daunting if you don’t know many people. Our’s  began with a “people scavenger hunt” as a mixer. Since Art suffers from a Parkinson’s type gait with severe balance issues on any given day, I left him sitting comfortably with friends at our table with the understanding that he would not be venturing forth in a crowded room on his own; a potentially dangerous situation for him and others around him should he lose his balance and  harshly plummet down to an unforgivingly hard floor, possibly taking others along with him on his downward descent! This sort of “people finding” activity is never his thing anyway, so off I went with my scavenger hunt paper in hand, in search of folks to fill the empty spaces (“Who has never gotten a speeding ticket? Who has the nearest birthday? Who has driven a race car?” etc…). Never once did I consider that Art would desire to leave the comfort and safety of his chair with our friends right there with him. My judgement was erroneously skewed…when I returned to our table, I was startled to discover his empty chair! Our friend told me (with a smirk on his face) that once I  had wandered off Art had proclaimed,  “I’m going to visit some other folks, since there is NO ONE here to stop me!” And off he shuffled, somewhat like a drunken sailor, wobbly yet carefree in his endeavor to seek out other friends.

As I anxiously scanned the room, I spotted him not more than a mere 20 feet away, cavorting with his choice of prime candidates to gently “harass” with his own sarcastic, provoking, sense of humor. There are times when folks who are acquaintances do not know how to take his own unique brand of humor. But this night, hearty laughter filled the air with pure joy, as the twinkle in his eyes told the story of a sense of  witty accomplishment on his part. LBD was no where in sight. Extricating him from his appreciative audience was  a formidable challenge!

Art sees an opportunity for humor in virtually almost every situation and immediately seizes upon it! The walk to and around the buffet table was fair game. Here I am, carrying two plates, filling one for me, and one for him, and instantly becoming the prime target to assail, as others chuckled at his loving verbal attacks on my “huge appetite,” brashly announcing that I was apparently leaving only meager portions for the rest of the guests to attempt to feast on…good thing I love him!!

The night  progressed with more games,  much continued light banter, and merriment. As I declared earlier, we were not to be disappointed. We arrived home later that evening feeling satiated; not only from the delicious food that filled our bellies, but filled with a  contented inner warmth that radiated pure love and joy on our faces. I could see it on Art’s, I could feel it in mine.Times like these are not promised, especially in light of my husband’s Lewy Body Dementia diagnosis, but for one simple night, for one moment in time, we were blessed to have him be his somewhat raucous, lovingly playful self, once again. I’ll take it. All was good with the world that night.

 

Living the Life

As 2017 is drawing to a close, I am reminded it has been two years now that my husband was jarred into the reality that something was going terribly wrong with his state of mind. It was at a friend’s Christmas dinner party that Art stared vacantly into the distance, absently turned, and simply walked away right in the middle of a conversation with a nurse friend of ours; not once, not twice, but three times that night. When I asked him about it later that night he angrily insisted that the two never even attempted to engage in conversation. For the first time, I saw  fear and alarm in his eyes. Art credits our friend with being responsible for scaring him into seeking appropriate medical help. Up until that fateful evening, it was only me telling him something was not right, and that he needed to go to the doctor. Being his wife, it was naturally turned around during our uncomfortable, always tense conversations  about what I saw happening to him on a daily basis. The facts were skewed to be my overactive imagination, making up things, and during one especially vengeful confrontation, was accused of being like the mother I knew who suffered from Menchausen Syndrome, a psychological disorder whereby “an individual falsely presents another person as ill, impaired, or injured.” (Psychology Today, 2017). Enter an unbiased third  party, not having seen us for a while, recognizing his inability to engage and hold a conversation as a terrifying red flag, needing immediate medical assessment.

Life turned on its heals for us following his grim diagnosis just a few short months later. In the past couple of years the progression of his Lewy Body Dementia has been moderately paced, with clear digression in all areas of his abilities, mental and physical. The tough  part for him is that he never remembers what he has, and most days he denies there is a serious problem, and that he can indeed continue life as he once was. He cannot. But rather than dwell on what he has lost, I prefer to look to what he has the ability to do. So yes, LBD is debilitating, but for Art, it is crucial to continually point to the positives in his/our lives. So this year as Christmas and 2018 draw near, I am making a list, not a Christmas list of wants, not a New Year’s resolution list, but rather a list of “Haves”. What do we have (not material things) that we thank God for??

  • We have each other. Always.
  • We have a caring family, with new grandkids coming our way within a few short months of each other! We love them all, and can’t wait to meet Benjamin, grandson #3, grandchild #4!
  • We have you. All of you who care for us, pray for us, help us in your own loving way. Thank you!
  • Art still enjoys his amazing artistic abilities-with the art show fundraiser this past October his talent received recognition beyond his wildest dreams! What an ego booster! While the fundraiser was a huge success, he actually loves to give away paintings. Truth be told, he gives away far more than he sells. This is his legacy.
  • He still enjoys his own brand of sarcastic, often silly, sense of humor. Some things never change…we’ll take it!!
  • His desire to live each day to its fullest. Whether it’s painting, meeting his pals for coffee once a week, or having his grandkids lovingly throw their arms around him for a healing bearhug, each day is a new opportunity to live life  in his way.
  • We have our faith. I don’t know how folks get through life’s challenges without the hope and promise of God’s grace. From the poem “Footprints in the Sand”: “My precious child, I love you and will never leave you
    Never, ever, during your trials and testings.
    When you saw only one set of footprints,
    It was then that I carried you.” God is carrying us each and every day of this journey.
  • The hope of a new year, and what it will bring. What new adventures await us? We do have a thing or two up our sleeve, but for now we’ll just keep it neatly tucked there…

Thank you letting me share our lives with you in this way. I find writing a cathartic experience, one that forces me to look deeper into my soul to uncover the truths I may have kept hidden. My prayers for you all are that you find peace and joy this holiday season and into the new year. As always,

Blessing to you and yours!

Chris

 

Challenge Accepted: An Amazing Feat!

I have had a crazy notion haunting my thoughts for a while now. This past August, I gauged my husband’s reaction to it. He was wary at best, most seriously hesitant and frightened, but cautiously fascinated by the thought of my idea. You see it involved him baring his soul publicly; allowing the world to effectively judge him in a most personal, transparent way. I wanted to do an art show masked as a fundraiser, using his original oil paintings,  for the very illness that is robbing his life day in and day out: Lewy Body Dementia.

My husband is most aptly named: Art. He has a website called, originally enough, http://artleeart.com/ . Our family believes in his creativity and talent. His life has become a quiet, ongoing obsessive  mission: to create original oil paintings, from the recesses of his  ever changing, complex mind, from sun-up to sun-down, each and every day he is on God’s green earth. He creates unimaginably impressive images, in spite of his declining mental and physical acuities, often using the most brilliant, brightest of colors; a stark contrast to the darkness of the Lewy Body Dementia that is openly destroying the person that he once was.

The scene was set: The entire weekend of October 27th-29th would be the LBD art show and LBD fundraiser, displaying and selling his most creative and inspiring pieces, which had been made into cards and prints, as well. The venue was perfect-the Artist’s Studio and Gallery at Patriot Place, in nearby Foxboro, Massachusetts, a popular shopping/sporting destination for locals and tourists alike. Now all we needed was folks to come by and support our mission. We were about to be wowed by the masses!

To say that we were humbled would be an understatement. While I had done my fair share of legwork regarding the publicity of our event, we were  not prepared for the unbelievable influx of people that appeared at the show to support Art and our cause. The doors had actually opened an hour earlier than planned on Friday afternoon to accommodate the growing number of patrons wanting to come in and see his artwork. We made our first sale before it was technically slated to start! That was only the beginning…

Over the next couple of days we were  enthusiastically greeted by friends, family, acquaintances, and strangers alike, who had all either heard of the show or simply stumbled upon it by chance. We even had a dear friend make it up from Florida just for the show!  The outpouring of love for Art and our family was phenomenal! The sales line was often long and winding, but people were patient and eager to purchase an Art Lee original! We were truly blessed by all who took the time out of their busy lives to come down and see the show. The show/fundraiser wildly exceeded our expectations, garnering just shy of $7,000!!! Needless to say, we are already booked in for next year at the gallery….so save the date, the last weekend in October!

A final thought: Art was incredibly nervous and unconvinced that he could present his paintings publicly like this. He was sure he would hear negative comments, which would crush his spirits. Instead, what he received was all positive, and dramatically encouraging to  him. To those who came: Thank you! You made this vulnerable, gentle man who suffers daily with the effects of LBD feel like a celebrity! We all felt the love. May you be blessed by knowing you helped lift his spirits for days to come…

When the Unthinkable Happens…

Maegan's bootsThis past spring  Art’s CNA caregiver , our friend Doreen, took a two week trip to Jamaica. Doreen had gently and reassuringly gained Art’s trust as  his caregiver during my absence on my work days. He does not easily trust others, especially someone coming into our home to help out (in his mind he does not need help), so for Doreen to earn his confidence was a real coup. Now that she was leaving on vacation caused much anxiety within my LBD suffering husband. Enter Maegan, Doreen’s lovely and capable  20 year old daughter (also a CNA). Maegan met with an anxious Art a few weeks prior to Doreen’s leaving on her Caribbean trip, as he was only used to Doreen, and unsure of anyone else coming in her  place. It was tough enough to get him to accept one caregiver coming into our home to watch over him, introducing a new person into this mix was a dicey situation. I had no idea how he was going to cope with this.

To say that Art was wary at the thought of this new young person  who was supposed to care for him was an understatement. He initially eyed her guardedly, doubting someone so “young and inexperienced” could possibly do anything to help him. And quite frankly, he viewed Doreen’s absence as an opportunity to prove me wrong about needing a caregiver at all. He stubbornly rejected the notion of accepting another caregiver, as he believed he was actually still capable of caring for himself at all times (sadly, not the case). But he grudgingly agreed to  meet her at our family’s insistence.  Maegan was about to melt his tough exterior and that distrustful mind of his, and endear herself into his heart.

From the very moment Art met Maegan he was struck by her mature sense of calm, her serenity, and her grace. Of course being outwardly beautiful as Maegan was with her big brown doe eyes and flowing long blonde hair, didn’t hurt one bit either! But Maegan approached Art respectfully, and cautiously, gently breaking down the crusty walls of his sometimes gruff personality. They immediately discovered something they had in common-a love of horses and riding. Many do not know this about my husband, but for a few years his parents had a farm in Texas, and they not only owned a family horse, but stabled them for others as well. Each day when other kids would have to come home to do their homework first, Art and his brothers had to “exercise the horses”, aka, ride them! Oh the stories they swapped around this very topic!! Maegan concurred, that she too had to ride her beloved horse daily after school. Art was sold, Maegan was in!!

To say Art enjoyed his time when Maegan would sub for her mom would be an understatement-he simply loved talking to this caring, compassionate, and capable young lady. She proved herself more than competent, caring for his needs, and  making him feel important and valued with each new tale he would share with her. She was always attentive and inquisitive, which made him simply adore her all the more! She worked out beautifully, and a wonderful relationship was born!

That was March. By the end of May, a once vibrant and healthy Maegan began to experience what appeared  to be severe flu-like symptoms. Maegan did not have the flu. I will not delve into the horrifying details of Maegan’s sudden onset of the often mortal disease known as Hemophagocytic Lymphohistiocytosis, or HLH for short. Sadly, It is a desperately harrowing health battle often fought and lost. Maegan had many highs and lows with this shockingly fast-moving and debilitating illness that attacked her body with a vengeance, rarely letting up. Much of her hospitalizations were spent in ICU’s in two of Boston’s most prestigious hospitals.

In June, Maegan turned 21, but instead of a celebratory night out partying with friends at a club, Maegan was fervently entrenched in the battle for her life. Earlier in the day a devoted, blessed friend surprised Maegan at the hospital to wish her a happy 21st. At 4 p.m. that same day Maegan was released from the hospital, as she was allowed to return home for her big day. She quietly celebrated with a cupcake at home, surrounded by her loving family. In the end, after a valiant 88 day struggle with HLH, she succumbed to this horrible disease; passing away with her beloved cowgirl boots on. Yes Maegan was a bit of cowgirl. The boots on that fateful day was her idea. She wanted to die wearing her boots. A symbolic gesture that gets my Texan husband every time.

Art and I are heartbroken for Maegan’s family. It is not easy to gain the trust of an individual with LBD, but that is just what Maegan accomplished. Life throws some pretty outrageous curveballs, and as I deal day-to-day with a husband and his LBD diagnosis, I am struck by the realization that we do not have a corner on the market for pain and suffering. People’s hurt comes in all forms, heartbreak knows no age or limitations. I know this loss is already affecting my husband, as he cannot stop thinking about Maegan. He laid in bed most of  last night thinking of her. I am thankful we visited her in the hospital a few times, and offered what little help we could. In Maegan’s casket at the wake was the painting Art had given to Maegan, resting in a place of honor just above her body. Art was touched beyond measure by this loving, final gesture of her family on Maegan’s behalf. Art was told, “Maegan loved that painting.” We never know how we touch the lives of others, and the impact we have on them, until sometimes that life is gone. Even if that life is a mere 21. With tears in  our eyes and  grief-stricken hearts, we are proud and to have been privileged to know Maegan and call her friend.

To those who deal with the multitude of wonderful, hard working  nurses, CNAs, hospitals workers… appreciate and thank your caregivers for the positives they bring to your LBD (or any illness they are facing) loved one, and the much needed relief they give to you. Tomorrow may be too late.

The Gift of Time Away

Life takes some tough twists and turns sometimes, and I am not going to lie, living with a husband suffering with the debilitating effects of LBD is not one I ever imagined I would  be dealing with. But time away, minus your LBD loved one,  is an important emotional recharger-a necessity for those of us on the front lines of this dreaded disease, facing and coping with its daily challenges with the person we will always love slowly losing his grip on life. Recently, I was  given the much needed gift of time away by my beloved, selfless, and caring family, as they stepped up to the plate to care for Art, so I could get away and enjoy myself without fear or worry, knowing my husband was well cared for by those who love him. For this, I am truly thankful.

Each LBD caregiver has a unique idea of a dream vacation, sans their LBD loved one. For some, it may be simply sitting on a  beach, digging your feet into the warmth of heated, sun-bathed sand, feeling the massaging effects of grains of sand beneath your feet, while watching the roaring waves crash spectacularly onto the shore;  or enjoying the  serenity of a cool  mountain morning, with splashes of sunlight breaking through the magnificent evergreens towering above, as you listen to the glorious sounds of nature singing their joyful songs;  or quietly sitting on the deck of a lakeside cabin, sipping your morning coffee as the water before you seemingly glitters as the break of dawn bursts forth, and you listen to the delicate, lapping caresses of each wave as it rolls rhythmically onto the waiting shore.

My idea of a great getaway? Escaping the hustle bustle of the Boston area to soak in the slow paced life on the moors and  the Highlands of my cherished ancestral homeland of Scotland, where a lilting Scottish accent is music to my ears, and the haunting sounds of the bagpipes are never far away… Castles of my heritage awaited, misty moors were calling my name in the wee hours of the morn; glistening lochs galore, waiting to be explored, instilling a sense of peace and calm like nowhere else on God’s green earth. In Scotland, my story unfolds, drawing me near, claiming my sense of belonging. It’s where the generations of MacRae’s come from. I am a MacRae.

Not exactly a short drive north, I know. But with lowered airfares, and a good friend who was sharing travel expenses, (who turned out thankfully to be a GREAT travel companion) I indulged! Scotland, I do so love you! I lingered twelve long, luxurious days in this glorious land. I traversed wet, wonderful pastures rich with local history; hiked craggy, rocky Highland hills, and picnicked on a stunning hillside of the Isle of Skye, with breathtaking vistas where the sea meets dramatic, razor-edged cliffs; explored the desolate ruins of a once strong fortress on the banks of bonnie Loch Ness, endured the crushing emotions of horrific battlefields where the blood of my ancestors were savagely spilt; savored the tranquility of  lush, emerald rolling hills and astoundingly picturesque valleys. And yes, I visited a Scotch-whiskey distillery, which happened to be named for the highest peak in Scotland, Ben Nevis, where I partook in the tasting of some divine, full-flavored Scotch. But the most pleasurable part of my trip was spending the day roaming the pure, unblemished banks of central Scotland’s  pristine Loch Rannoch, with friends who have lived and worked much of their lives in this charming spot in the Highlands. We were treated to their personal history around Rannoch, which was indeed a special time for me to bask in the warmth and love of their friendship. I am honored that they wanted to share this part of their family’s life with me.

While much of the weather in resplendent Scotland was indeed rainy, or more often, a  misty-filled drizzle, it only added to the inspiring mystery and awe of this amazing land. My spirits never dampened, in spite of my sometimes wet, rain slogged shoes and dripping, plastic pancho. This trip allowed me the freedom to do as I pleased on a stress free level: travel abroad and truly enjoy the sights and sounds I longed to see; some new, some lovingly nostalgic from past adventures. I wish that all who are caregivers  for their loved ones suffering from long-term, debilitating illnesses, the chance to find some personal peace with some time away. To my family, I thank you for my opportunity to refresh and renew. You can not imagine how much this vacation, free from the daily stresses of caring for someone with LBD has meant to me. I have been truly blessed by your generosity. I return ready to resume my duties as caregiver…

But in retrospect, I suspect this has been a mutually beneficial experience, as you will forever have the memories of being there for our family in a time of great need, knowing that you sacrificed your time and energy, and did everything you could to help make the days during my absence a positive experience for all.

Time away is a gift, time away was a blessing.

 

Humor in the face of LBD

One thing my husband is noted for is his sense of humor and quick wit. While his quickness of wit may be waning since his Lewy Body Dementia diagnosis over a year ago, I can assure you-his sense of humor remains fully in tact! He  may not be able to always verbalize his musings, or may forget his thought mid-sentence, but the days when he is on the upswing and minimally struggling-look out! The guy can still redden the faces of the most innocent, and unsuspecting of folks (this happens to be his pride and joy)! Fair warning, this may redden even your face…this is a bit of a PG-13, or perhaps a more appropriately R rating. Let me indulge in a bit of my guy’s playful, high-spirited banter, even in the face of LBD:

Female friend complaining about menopausal hot flashes recently: “I am so darned hot, I feel like ripping off all my clothes right here!”

Art: “Wait a minute, let me get my camera!”

Art, reminiscing about the company he retired from a few years ago: “They were always encouraging us to volunteer…so I volunteered to work the mobile mammogram machine.” (They said no)

Driving down a quiet country road, my distracted, sleepy-eyed passenger lazily drolls: “There’s the reservoir for the town of___________________. I may or may not have peed in it; but you know me, when I got to go, I got to go!!”

When recently descending the treacherous steps from his doctor’s office with me on one side and his doctor assisting him on the other, my husband stopped short, stared with a look of shear disturbing alarm at the doctor, and in all apparent seriousness, cried out to her, “Wait! This isn’t going to cost extra, is it?” Her look of astonishment and inability to  say much of anything other than a barely audible mutter, “No…” was priceless. (A sideways wink let me to know he was playing us all!)

Upon telling an acquaintance that I was taking a vacation for the first time without him, the gentleman said: “Really? Who is she going with?” Art replied nonchalantly, “I don’t know! Some guy.” Silence. He loves to coerce the awkward, uncomfortable reactions…(fyi, I am NOT traveling with a guy!)

Art, walking on the arm of a lovely lady, my trusted and loyal friend, a nurse, who is gingerly lending an arm to aide my hobbling husband as he struggles to walk outside our church (he notices folks watching, in his mind, staring). Art looks a little too sweetly towards my unsuspecting friend and excitedly exclaims, with an animated,  overly zealous voice: “Hey,  I’m dating now!” Oh my. Others turn away, not sure how to react, but the three of us bust a gut laughing!!

Art, overhearing his caregiver on the phone to her husband, “I love you honey”. Art yells, “Tell him I  love him too!”. Not the sort of thing you want to hear when you are working at a prison…(her husband does).

And to our dear friend Debbie: “Blessed is she among women…” because, Art never misses an opportunity to harass this quick witted, fun-loving, jovial lady, as he knows she can take it and give it back just as soundly! Art: “Tell Wayne (her beloved husband) I am really looking forward to seeing HIM at dinner tonight…” (Let it be known that he truly does care about Debbie, and appreciates her ability to take a well-timed, well-intentioned joke). Thankfully, good friends always laugh at his irreverent, oft inappropriate antics.

This is just a snippet of our daily lives, seeking laughter at all costs!! When life isn’t fair, laugh in its face…that is how we roll here. We try not to get too down, but occasionally life’s curve ball does indeed get in the way. Perhaps in the future these times of lightheartedness will be simply a warm, distant memory to cherish. But for now, we will continue to encourage each other with nurturing levity, for as long as LBD will allow us.

“A day without laughter is a day wasted” Charlie Chaplin

 

 

 

 

 

 

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