Not an Easy Life: Reflection and Letting Go

December  2022

Dear friends and family,

As many of you know, our beloved Art lost his valiant battle with Lewy Body Dementia  (LBD) on February 10th of this year. It happened to be my birthday, but I choose to look at it as his final gift to me, to know he is out of pain and suffering. Art was diagnosed  with LBD about six years ago, but we know he was suffering from the illness at least a year or two prior. Getting him to the doctor to be tested was not something my stubborn guy easily agreed to. But following some pretty significant issues, he begrudgingly agreed to submit to testing from the professionals. He was sure they would tell him he was “faking it,” and nothing was wrong with him. That was not to be. That being said, he never really accepted his illness, or its increasing limitations, physically and emotionally. That proved to be a challenge throughout his fight with LBD. 

I want to thank so many of you for supporting Art’s artistic endeavors. Countless numbers of  you made the trek out to his three art shows at the Artist Studio and Gallery at Patriot Place, much to his surprise and delight! Truly, it was such a boost for his morale and confidence! You gave this man such a gift, that it lifted his spirits for weeks! You blessed him, and our family, with your caring and faithfulness for his artistic mission in light of his weakening state. We are forever grateful.

I am convinced that not only his artwork, of which I still have hundreds in our basement (anyone want another Art Lee original?) gave him the drive to live on, but also his love of family; most dearly, our grandchildren. When he was first diagnosed we only had two little ones, when he passed away, we had five! When they each  entered the house one of their first words were “Where’s Papa?” Once they found him (usually painting in his basement makeshift studio), Art, their ever loving Papa,  was  always offered a warm hug or a kiss. Oh how he cherished those visits with the family! He was forever playful with the grandkids, and will be remembered with love for his silliness with them, always making them smile; and they in return, making him smile. What precious memories!

But in the fall we could see how crushingly  brutal the advancing LBD was as it began overtaking Art; he had deteriorated significantly, and was losing his battle with this insidious disease, and by the end of December, just before Christmas, it was clear I was no longer able to care for him safely at home. A wonderful hospice home was found, where he spent a little over a month  prior to his passing. We are forever thankful to the nurses and caregivers there, as they did an outstanding job caring for him. When we realized the end was imminent for Art, our family knew we would honor his wishes, to be cremated and have his ashes laid to rest in Loch Duich (a lake), which are the waters by the Eilean Donan Castle, in the Highlands of Scotland, where we had happily traveled as a family 12 years ago on the trip of a lifetime. 

Since Art died on my birthday, I thought it only fitting we send him off on his birthday! So it was, On October 6th, what would have been his 67th birthday, our family of ten, five adults and five (grand)children, made the trip across the Atlantic to Scotland, where we gathered at the Eilean Donan Castle to say our final goodbyes to Art. It was poignant, with his sons and daughters-in-law all sharing some loving thoughts of “Dad,” and our seven year old grandson declaring, “I loved Papa’s paintings!” With that, our sons, Kevin and David, walked to the water’s edge, and gently placed their dad’s cremated remains into the loch. The guys stood for a precious moment once the ashes were placed into the water, with arms around each other, for the last time they would be in the presence of their dad. A prayer was said, as we all held each other and cried. It was a beautiful way to pay our ultimate respects to a man who loved each and everyone of our family, and we will forever hold dear the memories of him, and of that day.

May you hold fond memories of Art as well,

Blessings,

Christine Lee

A New and Final Phase

Life had become increasingly more difficult for Art and me; hospice had evaluated him, and had admitted him as an in-home patient the second week of December, effectively changing him out of the lesser need-based palliative care, to the more declined state that qualifies a person for hospice care. Some of you may assume this new admission means I then had around-the-clock help, not so! Hospice care supplied a nurse practitioner, a social worker, and a chaplain, all once a week; an aide came twice a week, for one hour each visit. It was me as his primary caregiver most of the time. The physical therapist had signed off the day prior to Art transitioning from palliative care to hospice care. Art was no longer making any progress, and in fact was deteriorating. It was time to move to the next level.

It had become glaringly apparent that Art’s needs had escalated significantly within the past month. The final day the Physical therapist attempted to work with him, Art was deemed no longer capable of walking, and the critical determination was made that he would need to be using a wheelchair from now on. That said, it was my responsibility to maneuver him from a sitting position on the couch, to a standing position (using a gait belt, which Art wore all the time), and maneuver him with legs that were rigid and unmoving, into the wheelchair. Not an easy task, to say the least! Imagine then attempting to roll him into the bathroom, which is a tiny half bath, where the wheelchair does not fit. I had about three feet to get his uncooperative legs from the wheelchair to the toilet, having to turn his body in the process in order to enable him to sit down on that elusive throne. This was immensely frustrating for both of us, as I was trying to move his legs myself, hold onto the gait belt at his waist, all the while trying my hardest to keep him steady so he would not to lose his balance and fall! This was so frustrating and stressful, and honestly, practically impossible, that I felt like we both just wanted to cry all too often.

Did it work? NO! More often than not I was not successful, and the poor guy fell, leaving massive bruises on his body, due in part to the blood thinners he was on. But the fact that he is ten inches taller than me, and several pounds heavier, made the challenge to keep him safe agonizingly monumental. The night he fell twice, I could not pick him up, and was forced to call the fire department for a “lift and assist.” That first fall he landed hard on his bottom, and as protocol, I also was required to phone the hospice nurse on call in addition to the fire department EMT’s. After some evaluative questions, it was determined Art would remain at home, and the nurse would be out shortly to give him a home check. This was not what the EMT’s wanted, but I followed the hospice guidance that first fall, as I did not want to lose his hospice support, which would happen once he went to the hospital. But that all changed with the subsequent fall around 4 A.M. Long story short, I relented and agreed with the EMT’s and allowed Art to be transported to the local hospital. It was necessary that he be properly checked out for broken bones, a brain bleed, or any other potential injuries that he may have incurred. That was a crucial decision, and set the ball rolling into the next phase of Art’s life.

Once at the hospital, it was determined that he had no serious injuries, but it was clear to the medical professionals that I was unable to care for him safely at home. It was with a heavy heart that I admitted my failings, and agreed to have Art placed in a hospice home for 24/7 care, where he would be in more capable hands, with multiple watchful eyes on him, a well trained nursing staff, and most importantly, he would be kept safe. The good folks at Milford Hospital found a wonderful hospice home in Worcester (a 35 mile trek each way for me), and thus, Art is now living as contentedly as possible there. The staff is topnotch-caring, supportive, available to me for questions, and thus far Covid-free, with many careful protocols in place to keep these most vulnerable residents as protected as possible. Is it costly? You bet! Hospice is covered by insurance, but not room and board. That’s the major expense! But I am at peace with this decision. He is being well cared for, and the overwhelming stress that I was under doing my best to care for him was instantly lifted. Accepting that I could not do it all for him at home was heartbreaking for me, but ultimately, it was the right decision for both of us.

He no longer eats much of anything, and only takes sips of water occasionally, which has resulted in about a 60 pound weight loss. He is bedridden, cannot walk, sit up on his own, nor dress himself. But that sense of humor remains ever present! Did you expect anything less from this tough guy? There is little he can control at this point, but the ability to make another laugh and feel at ease under these most trying circumstances is simply who he is. No one knows how long we have on this earth, and I accept each day with Art as a treasured gift. Our days are no longer filled with tears of angst and frustration, but with a sense of calm, peace, love, and yes, with laughter. We are taking this new phase of life as always, one day at a time.

Art with me, at the hospice home

Not a Superwoman After All

My toes are a lovely shade of purplish-black on my left foot, My neck and chin are a matching shade of that same charming color, my back is in major spasms, and my bad knee, that part of my body that bore the brunt of my fall, completely took my breath away and brought on intense waves of nausea with the surging pain I felt when I landed like a ton of bricks on it. To say that I am bruised and sore in more areas then I care to admit would not be an understatement; but the most humiliating pain is undeniably to my sense of self. My ability to completely take on all the responsibilities of home, and care for my husband’s failing health, has struck a disheartening chord with my aching body as I strive to soldier on with my daily tasks. Not going to lie, this is a struggle! Simply gathering the trash and bringing it out this morning posed more of a challenge than I anticipated. Not a good start to the day… A visit to my beloved chiropractor (let’s hear it for Dr. Christy!) and warnings that it may get worse before it gets better, to ice my injuries and take it easy, was no surprise. So what did I do right after my visit to the chiropractor? I went grocery shopping. I needed to replenish my fridge, and with additional household expenses incurred lately, I wasn’t willing to pay the extra fee for the shopping app I often use. But the energy it took to do this ordinary task that is usually a pleasure for me, was surprisingly tough. Once home, with groceries put away and lunch made for Art and me, I welcomed the comfort of my couch, my ice pack, and (cringe) unintentionally but peacefully drifted off to sleep. As I slept tranquilly, my dementia suffering husband sat hunched over in his artist man-cave downstairs, completely oblivious to my unplanned respite. He no doubt succumbed to his own slumber, as he often does when he sits and “watches old movies” in his pillow laden wheelchair, which don’t be mislead-he uses simply as a chair to sit stationary in, like a comfy lazy boy recliner, sans the recliner. I am lucky and thankful that he did not attempt to wander outdoors with his off-kilter, shuffling gait, and wind up falling himself, which he has done in the past, with terrifying results.

I have friends with good intentions who have encouraged me to keep writing my blog, reminding me of the positive intent I usually instill as one who deals with these life altering, challenging circumstances on a daily basis. But the reality is I do not always feel the positive, as Lewy Body Dementia and our current circumstances collide, making life much more stressful and taxing on us both, mentally and physically. The realization that I may not have it in me to do everything I once did, hurts. I hate asking my family and friends for help, but I do when it is absolutely necessary. So my latest takeaway is to just do what I can, and no more-not to perseverate on thinking I should be able to accomplish the task before me, as I have in the past; instead, simply ask for help when it is beyond my capabilities, and accept that it’s ok to not always be everything I think I should. In essence, I will give up the superwoman mantra. Hard lessons learned…With this realization in mind, I want to say how much I deeply appreciate the reprieve I get from my loved ones, the much needed help, whether family or friends, the understanding, and the occasional much needed break I am blessed with. In time, my bruises will fade, my aches will dissipate, and my emotions will even out, but one thing I know for sure, I do not have to do this all alone.

Blessings to you all!

Pandemic, Lewy Body Dementia, and Coping

October, 2020: I have had zero desire to write about our life during this dreadful 2020 pandemic of Covid-19. In fact, this is my fifth attempt to start a piece. I have a title, but that is about it…But this blog has been stagnant long enough, as it has been niggling in the back of my mind lately; whispers invading my thoughts of how we are coping with life’s latest challenges, whether the right way, or the wrong way. Let me just say that his LBD keeps him ignorant of the many realities of Covid-19; even in the face of the effects of this dire pandemic on our significantly altered lifestyle. This lack of comprehension and memory are at times frustrating, and a blessing. But still, Covid-19 has affected us.

Art has not had Covid-19, although he has been tested three times for it. He does not always remember many things he has done in the course of a day, but those tests, he remembers (“I thought they were sticking that thing up my nose all the way to my brain!”). It’s funny what dementia does to the brain-what it chooses to recall, and what it chooses to forget. Many families who have loved ones suffering from Lewy Body Dementia simply refer to all the ill-effects of the disease as “Lewy,” like an invader living within the body of their cherished one, having relentlessly taken control over all aspects of that person’s thoughts, actions, feelings, and life; and yet, it is unequivocally like a careening roller coaster ride, with days of being with it, and days of distance and fogginess within the brain. “Lewy” can cooly lay low, allowing treasured good days, but markedly ravaging the soul and body on devastatingly bad days. The ability to take in information and fully grasp its meaning slips away, much like a wave washing over the sand and gently receding, taking with it the memory and understanding of what was momentarily there, but is now completely gone, washed away. This is how it is with Covid-19 and Art. Case in point, we were waiting in a lengthy line for a drive-up Covid test, when suddenly Art was panicked. “What are we doing? Where are we? Why are the police here?” Like that wave, Lewy washed up over him and took away the understanding of why we were there. Even when I assured him it was only to be Covid tested, he was confused, and just didn’t understand what Covid was or why he was getting a test for it. On any given day he may know Covid is a terrible sickness, but he still doesn’t grasp the seriousness of contracting the virus, especially when someone who has underlying medical conditions, as he does. The dire consequences of the virus tends to elude him, making him confused as to why we can’t eat out at his favorite restaurant, give someone a hug he hasn’t seen in a while, or why we can’t just visit with trusted friends in our home.

March 2021: I am struggling too, as it is emotionally draining to attempt to finish writing this blog, I live this truth with Art everyday, and ache not to relive it over again with this writing. But I think it will be cathartic for me, so I will plod on, though motivation escapes me mostly. I am a jumble of mixed emotions and contradicting feelings at best, but I am determined to be more motivated this time.

It has been one full year since Covid-19 has crept in like a thief in the night, and transformed our lives dramatically. During this time of Covid Art has continued to struggle with his health. To date, he has had two more stents placed in his arteries, a pacemaker implanted, biopsies for growths in his thyroid (thankfully two rounds of biopsies on two separate occasions proved negative. Unfortunately, the growths appear to be getting bigger, and are being closely monitored by the specialist), and his latest go round is an off and on stabbing pain in his abdomen, which is indeterminate in nature to date. Tests will be forthcoming on that front in late April. So even in lockdown mode, we were busy…but not exactly enjoying fun times, as you can see.

But the good news …

Art had his one-and-done Johnson and Johnson Covid vaccine three weeks ago, and this week I had the the first shot of the Pfizer Covid vaccine. One more for me, and a few weeks of allowing the vaccination to work its magic, and we on our way to hopefully a more “normal” pre-pandemic lifestyle. Caution and patience still need to prevail, I know, but it is definitely a step in the right direction, and for this, I am thankful.

Art was the featured “Artist of the Month” for the local Medway Cultural Council, giving him recognition and acceptance as the talented artist that he is. While this was nerve-wracking and a bit overwhelming for him to wrap his head around, I assured him it would be ok, as I wrote the article for him, and thus, had a sense of control over what was shared in such a public forum about his illness and his painting. It was handled beautifully by the members of the Medway Cultural Council, and the feedback was heartwarmingly positive. He was elated at the end results! Here is the link for it: https://medwayartists.wordpress.com/2021/03/01/art-lee-oil-painter/

No doctor appointments for a month! This is huge! Art anxiously hyper-obsesses about these appointments, dreading every in-person or telehealth medical visit he must endure, so I usually don’t let him know until the day of the appointment, trying keep his stress level to a minimum timeframe. This break in dealing with doctors is a blessing for his emotional state, and mine!

Spring is here! Though he rarely likes to leave the safety and comfort of his basement artist studio, with sufficient prodding, I have gotten him outside on our deck, where we can enjoy the sunshine on our faces, the gentle breezes as it ruffles our hair (or in his case, beard), and listen to the joyous sounds of nature that surround us. Once I was even able to get him to agree to go the local park, where he was able sit and watch the turtles lazily lounging en masse on a fallen tree limb, and some geese and ducks cavorting excitedly in water before us, flapping their wings and strutting their stuff for all to see. These shared quiet times between us are always precious moments, fleeting reminders of times in the past when he longed to enjoy the outdoors. Once there, he is quiet, and contemplative, seeming to take it all in with shear bliss and contentment. It’s these times that serve as gentle reminders that life marches on, and even though our circumstances may have changed, life’s simple pleasures can still be enjoyed and appreciated.

Life is as always, one day at a time at the Lee household. I urge you all to stop, be still for awhile, and take stock of the positives in your life right now. I pray you can uncover them, as we have. Hoping for a brighter tomorrow…be well!

Surprises, and then Some.

Things had been going along quite swimmingly, as they say…until they weren’t. Art had been having quite a good stretch; successful art show, replete with a some surprise guests I had invited to make his day.  He was reasonably healthy (all things considered), and we were enjoying some much cherished time with the active, but always loving grandkids. Fast forward two weeks to the  day after art show, and Art, who NEVER has agreed to a ride to the E.R.  (Emergency Room) in an ambulance (even after hitting his head in the bathtub and being knocked unconscious a couple of years ago), did not argue one bit, nervously admitting he was “feeling weird,” with severe neck pain, a tortuously aching arm, and dagger-like stabbing pain shooting down his chest. Long story short, he was indeed suffering a heart attack, and after several anxious hours spent overnight at the local hospital, Art was dutifully transferred to the much larger facility, University of Massachusetts Medical Center (UMASS), in Central Massachusetts, where they were more capable of handling his significant health issues.

Once being admitted to the UMASS E.R., Art was given a team of cardiologists to evaluate his condition. The plan was to give him a heart catheterization to look for blockages. While in the UMASS E.R., the nurses and attending physicians witnessed one of Art’s disturbing neurological attacks, whereby his face and speech mimic a stroke victims, having the right side of his face droop, and his speech slur to the point of being completely incomprehensible. These attacks seem to come out of nowhere, and are understandably thoroughly frustrating for Art, to say the least. This event brought in a new team of specialists, the neurologists. After about 14 hours in the E.R. Art was finally given a room on the pulmonary floor. Not the admitting floor preference that his two teams of doctors requested, but hey, you take what’s available after being stuck in a busy E.R. all day! (Actually, between the two hospitals, sans the 30 minute ride, he spent 24 hours straight in E.R.’s!)  Over the next three days Art had a brain scan, EEG’S, EKG’s, multiple blood tests, along with a host of other tests which I will not bore you with.

Results? The neurological team said they caught his “episodes” on the continuous EEG, which entailed Art having to endure multiple electrodes attached to his head throughout the night, into the next morning, roughly a  15 hour observation,  as well as a camera recording  his every facial tic, twinge, and slightest degree of movement. After this incredibly uncomfortable scenario, the powers that be came to the conclusion that it is simply a sign of his LBD progressing to a more degenerative  level. Once that was decided, then the cardiology team was free to move forward with their procedure: the heart catheterization. After two consecutive days with no food or water given until 6 pm each day (necessary for the impending procedure, which proved to be a frustrating waiting game), he was finally wheeled into the “cath lab,” where he  had two stents placed in his right artery. The left artery has a 40% blockage, but medication should take care of that. In the meantime, Thanksgiving was looming fast, as in the next day, and I always host the dinner. Art was itching to come home.

Unfortunately, it was not meant to be, and Thanksgiving was not the day he was allowed to come home. Thanksgiving in our family has always been a favorite day, brimming with food, family, friends, and much merriment. Sometimes, even in the face of adversity,  it is better for our spirits to keep a cherished tradition; hence,  it was decided to celebrate the day as planned,  even if one of our own would not be able to join us. The one hitch, in addition to no Art being there? I would not be contributing anything to the making of the meal, but  would instead simply be gracing the guests with my presence.  My home was open to all, and everyone was welcome to enjoy the day there.  So dinner duties were divided up between my guests, as I spent the morning with Art at the hospital. Once he was given a special heart healthy holiday, Thanksgiving day,  turkey dinner,  I left to spend the afternoon with my dinner guests. I had been at the hospital morning-afternoon-and night each day since he was brought in, and I needed a break. Nothing is better to lift emotionally drained and sagging spirits, than a loving family and good friends, who had all pitched in to make our Thanksgiving meal. My job was merely  to sit back and enjoy the fruits of everyone else’s labor! It was a blessing beyond words, and just what I needed.

Friday I brought Art home with a bevy of meds- some new, some the same, some stopped. He was not expecting to be so completely wiped out, but then again, he is a stubborn guy, not willing to admit anything had significantly changed. Fast forward a month past his heart attack to now, and he is recovering nicely, albeit without any cardiac rehab (go figure)! We have been to see his parade of doctors since his release, and in fact, have opted for a new primary care physician for him. Why change now? This has been a year in the making, but the change had to be made when in the hospital the cardiologist mentioned his “underlying kidney disease”. That was a shocker! We were never told of this, and Art has regular blood work done every three months. Our caregiver noticed it (after reading the results) and wondered aloud one day if the doctor wasn’t concerned about the kidney function numbers. No-never mentioned it. Ever. Not even after we visited him two weeks after Art’s heart attack. Out with the old, in with new…

Christmas was thankfully, an uneventful health day for Art. It was an especially blessed and  lovely day spent with the wonder of grandkids (and their  parents) eagerly tearing open gifts, little ones shrieking with excitement, us contentedly basking in the children’s revelry, and most assuredly, enjoying each other’s company. I am thankful Art was here to enjoy being with our loved ones! So different than Thanksgiving!

Of course yesterday (a week later), the excitement continued, as he unwittingly collided with a sharp edged heating duct in his basement art studio,  and took a  nifty  chunk of skin off the top of his scalp. It wasn’t deep, so no stitches required; but certainly shocking and excruciating. Heart attack patients are given blood thinners, so of course he bled profusely. After a call to the new primary care doctor (we met her and joined the practice  just two days earlier), I was able to get the bleeding stopped, and it was determined what I should look for as the potential for a concussion existed. Headache gone this morning, and no  nagging residual effects; thus, no concussion. So on we go, plodding on into 2020,  one cautious day at a time. Well, at least one of us is cautious…I hope and pray for an uneventful year, but with Art’s unbending will to do too many things he should not (old habits die hard, strong male ego), I try to be prepared for anything!

Keep those prayers coming, folks! Clearly we need them!

HAPPY NEW YEAR!

 

 

Art show #3, and Art’s will.

As I write this we are four days away from our 3rd Annual Art Lee Art Show and Fundraiser! I can’t believe it! We are looking forward to this weekend with excitement, anticipation, and trepidation. As you can imagine, things have changed significantly for my beloved in the past three years. But his indomitable determination to  live life on his own terms, marches on.

All year long Art gets up each day with a solitary mission in his mind-to create extraordinary oil paintings. After he was initially diagnosed  with Lewy Body Dementia, and his beloved license to drive was taken away, he was devastated. He had retired the year before and was enjoying being a part time limo driver. He always drove when we went out-even on the simplest treks, like the corner store, or the local gas station. He drove all over the 50 plus towns that he covered as the paving coordinator for his job at the gas  company. When we traveled, honestly, Art drove 75% of the time. We used to have a pop-up camper, and he drove with it attached to the car the majority of the time. Oh I could do it too, but he believed he was better at it (and he was). The man loved driving, period. So as you can imagine telling him he was no longer capable of driving, and that he posed a potential safety hazard to the other drivers out there,  the issue not only crushed, but angered this once consummate driver.

Thus, Art’s path to his daily existence began to take shape in another way: his painting. With his love of driving being stripped from his life, his passion in oil painting took center stage. Where others would have delved deep into depression, become emotionally devoid, and given up on life’s pleasures, my husband took the news with an angry, fighting spirit, refusing to allow it to define who he was. Instead, he chose to reinvent himself and live life through the elegance, wonder, and whimsy of the diversity of his artwork. Now, nearing four years post LBD diagnosis, his mission each day remains the same: paint. There are times when he is faced with seemingly insurmountable obstacles that are an ugly symptom of his illness; a cruelly deteriorating condition, which is in part affecting his strength and capacity to hold the ever crucial paintbrush on his worst days. But have no fear, when this daunting effect is present, this guy uses his fingers instead. For a disease that robs him of critical thinking skills in the most common circumstances (“How do I turn on the coffee maker, use the microwave, the toaster oven…?”), when it comes to problem solving with his artistic endeavors, he is surprisingly resilient. Case in point, he created a painting of the Eilean Donan Castle, my family’s clan castle in Scotland, done only with his fingers. That was a particularly shaky day for his hands. The tremors were unrelenting. But he persevered, and what resulted was an amazing masterpiece! No one would know that the castle likeness was not the result of a traditional means, unless we told them the unique method used. It’s that spectacular.

We look forward to the art show and fundraiser again this year, and seeing many faces, some familiar, some new, all welcome sights! That first year we held the art show Art was animated, up and walking around, spouting his wit and wisdom for all to hear. Classic Arthur. He was energized and overflowing with pride, nervousness, and excitement, to say the least. At the suggestion of the gallery owners, he brought his paints and canvas, and  when there was a lull in the gallery activity, he sat at the easel, working on his next showpiece. The next year brought him back to the gallery, but sadly, unable to sit comfortably and paint there, as he had in the past.  It was just too overwhelming, so he sat much of the time outside the gallery, greeting folks and  hopefully, potential customers. Sometimes he quipped, sometimes he stared at seemingly nothing; all part of his advancing LBD. But he was there.

He loved being surprised by so many friends who took the time to drive to the show and support him at the fundraiser. This year we contemplated not having the show, as he tires especially easily now, and struggles to function at all some days, often sleeping instead. His body is mostly hunched, his gait askew, and his memory is becoming distressingly altered. He is entering a new, more debilitating phase. Some who have not seen him in a while may be stunned if he happens to be having an off day during the this year’s show. But regardless of his energy  level, he was adamant; the show must go on. After all, what else are we going to do with the 500 some odd paintings in our basement, aka his studio?

We look forward to the show with excitement, anticipation, and trepidation, to put it mildly! As you can imagine, three days is a lot for anyone to be at the gallery,  show his art work, and hope for a tidy profit to donate to a worthy cause; his own unstoppable disease. The excitement and anticipation has been building ever since we booked the date. This has evolved into a family event-we are not alone throughout the three days. His artwork has been turned into  prints, cards, and this year, a calendar. His original oil paintings are of course, being shown and hopefully sold. We are understandably concerned with his staying at the gallery all the time-and will bring him home if he appears exhausted and completely spent. We will be vigilant, keeping a watchful eye on Art and his condition each day. So if you go and do not see him, know it was just too much for his body at the end of the day. One of our family members will be there in his place to greet you. But his fighting spirit lives on, and if he can be there the entire time, you know he will. I am thankful God gifted Art with this amazing talent, the drive and determination to keep going each day and to use his gift to show others how to fight in the face of harsh realities.

Finally, we have a cherished, longtime friend from my own childhood, Ron, who has continuously  supported us by showing up to the Art show in the past, as he drove all the way from Florida (a kindred spirit of Art’s with a love of driving, too), who is now fighting his own health battle with cancer, who understandably will not be able to join us this year. Ron recently shared this quote from history that perfectly fit into his condition,  that resonated with both Art and I as we face the future with LBD: “Never give in…Never yield to the apparently overwhelming strength of the enemy. Winston Churchill 1941” That about sums up our daily lives, too. We forge onward, not giving in, and we also thank God for another day filled with his love and  grace upon our lives.

Blessings to you and yours!

 

Oh, the Things That are Said in the Name of Dementia!

I wish I had a recording devise going some days…the things that are said in the name of dementia does me in (often a good way) every time!   Lewy Body Dementia sometimes attacks the ability to speak, and regularly causes confusion in everyday life. That being said, my persevering  witty husband’s one-liners continue to flow forth without regard to place, time, or company!  Confusion be damed! Not always appropriate mind you, wherein  lies his brilliant newly conceived concept  of blaming it on dementia (“Oh it’s ok, I have dementia. That’s what it is.”). He is right of course, but that being said, let’s face it folks-Art has always been a tad bit “off” in his ill-brand of humor. I can still hear my died-in-the wool yankee (and proud of it) mother’s voice raising in alarm with her decidedly chastising tone, “ARTHUR!!” after one of his ill-advised comments. As of late, to take her place, in equal objection, but with a more playful nature, each of our lovely daughter’s-in-law declarations after a cheek reddening comment,  “Art, I’m right here!” or for the (lovingly, with a smile on her face) more accusatory finger pointing protest, “Hey buster, that’s inappropriate!”

Lewy Body Dementia has seen this brand of humor and raised it, as if playing a dangerous game of poker. LBD does indeed change a personality on any given day. Watch out, or you may be offended!! Nowadays, he spouts the F-bomb like it is nothing. He never did that before. Most often it is aimed at medical personnel-the doctor, the nurse, and his personal favorite, the phlebotomist…whom he affectionately refers to as “The vampire” (to her face). No worries, she gives it right back to him with a “You know it!!! Get in here so I can suck your blood with my rusty needle!” We love her. She has even made a line of patients wait for her while she insisted she help me get Art to the car safely on one morning that he was unbelievably  unsteady on his feet (of course he refused to use the walker). Not to be deterred, and  still spouting his sarcastic nonsense, “So, you’re coming home with me, huh? O.K…you know my wife’s right here?!”). I have had to immediately apologize to sweet young nurses for his lack of aplomb after having on more than one occasion rudely barked, “F___ you!” after something was said he didn’t care for, like the telling of his weight, or the loss of an inch or two off his height. He has no realization what he said immediately following these verbal attacks. He is quite literally shocked and stunned when I let him know what he said was so incredibly inappropriate. “What did I say? I DID NOT!” He sharply denies his words, and is annoyed to the point of anger that I claim he would say anything so vile at another unsuspecting, seemingly innocent person. That is Lewy in its harsher form. Thankfully we don’t see this side of LBD that much.

Friends and family are always amazed at his ability to still spew witty comebacks. In his case, I am pretty sure it will be the last thing to go… and for this I am both thankful and annoyed!!! As we deal with life with LBD, we are cognizant that each day brings a new opportunity at life, and we try to live it to the fullest with humor, love, and patience (challenging at times).  We know much of  what he says is the dementia, both good and bad. We are thankful for the good days, and pray the tougher days are are few.

As always, blessings to you all!

 

What Helps, What Hurts…

As we near the three year mark of the official diagnosis of Art’s Lewy Body Dementia, I am conflicted by a desire to share with  you, our dear friends and family, what helps us, but also what hurts us in our daily struggle with Art’s devastating illness. It is my sincere hope that no one will take this personally, that I am not chastising or trying to cause offense, but rather, allowing you a glimpse into our lives and how we are affected by actions, or inactions on the part of well-meaning individuals. Many of you have asked how you can help-after much reflection, this is what I have concluded on that precise matter.

Helpful:

• Do call us, send a note-email, text, or card. We feel your love, and know we are thought of and not forgotten. It is easy to get wrapped up in our busy, daily lives, but a simple note of encouragement is a great morale booster to both Art and I, and often touches us deeply to the point of tears (a good thing).
• Are you a friend who spent time with Art, me, or both (as a couple) in the past? If you are, continue doing this…spend time with us-together, or individually. Yes, I recognize that the big guy thinks a great idea for a visit is to sit downstairs in his veritable man-cave, smoke cigars, watch old movies (spaghetti westerns and John Wayne), drink Pepsi and Mountain Dew.  On Art’s good days he enjoys a meal out-breakfast, lunch, or dinner will do!! If you plan a visit with us both, we will be upstairs in the smoke-free environment, I promise! One other note on visits-make them short (an hour), as he tires easily and may fall asleep (while we are all sitting) at the table, or he may become prickly and unpleasant to be around, also a side effect of his exhaustion. (Note: LBD sufferers have been known to throw the F-bomb around without a care, especially disturbing if they were not likely to do so prior to their diagnosis, which is the case with Art.  But take heart, he mostly tosses them in the direction of the doctors and nurses who are treating him. That being said, all bets are off, with no guarantees…)
• Offer assistance when you are out with Art-carry his coffee, take his arm, get him a straw (even for coffee), pull out his chair, be watchful of his difficulty with steps and his lack of balance when walking, as these are often what cause him to fall. I am not saying you can always prevent a fall, just keep a close proximity to him, and be there to help if you can. A gentle assist with his arm is often comforting, and quite simply-a safeguard.
• Don’t get offended or take it personally if he is not up for a visit-he hates to see friends when he is struggling with his LBD. There are days when he is able to be more social than others, unfortunately, we can’t predict when this will occur.

Hurtful:

• Please do not exclude us from your invite because you assume we would not be able to make it. Maybe we won’t make it, but we would love and appreciate the opportunity to try!! Also, I may be able to enjoy a night out, while getting someone to stay with Art. It is more painful to realize we have been purposely excluded from an event invite due Art’s LBD (yes, it has happened). Do we embarrass you? It’s possible, but there is nothing I can do about that. As a caregiver 24/7 for my beloved, it is crucial for me to enjoy time away from my stressful life-a little fun goes a long way at making my life more bearable, as I achingly watch my husband decline and slip away a little more each day.
• Although Art may seem cognitively “with it” on any given day, do not forget that simple, every day, mundane tasks have left his capabilities lacking. Do not chastise him for not knowing how to answer his phone, send a text, get his messages, send an email, run the DVD player, use the remotes…you get my drift here? What we all take for granted, he has lost on most days. He will remember that off-handed comment, the slight, the unpleasant, condescending tone that was aimed at him. You never know what he will recall, and he seems to feel the verbal shortness of others longer-his brain hangs onto these offenses and obsesses over them. So please, be patient and kind, he cannot help what he has lost, even though to you, all of these daily tasks are easily accomplished without a single thought.
• Here is a tough one not to cause hurt feelings, but it must be said, for my own piece of mind and sanity. I ask that you read this and try to see my side of this scenario: please do not call and offer to go to the store for me-it may sound silly and ungrateful, but it actually makes me feel terrifyingly closed in, overwhelmed and trapped! For a caregiver, this is one of the worst feelings EVER!! I feel as though I am being banished to this house, which creates in me my own sense of anxiety, panic, and suffocation. Please don’t even bother to call and offer-I know your intent is pure and loving, but it leaves me feeling like I am drowning and can’t reach the surface. It is the one thing I can’t handle-so please, don’t do that to me!!! Getting my groceries is not a problem. I can run out (my short escape) and get milk. I need that release-I enjoy my liberating jaunts out alone-don’t deny me that! I draw immense pleasure from these commonplace missions. Instead, send me a note, plan a visit, pray for me/us. Give me hug when you see me-and Art. If you think offering to do errands for me is all you can do, you are wrong. Please don’t be aggrieved. Instead, reread the things above to honestly help-they are not difficult, and are just as much a gift of love.

As always, blessings to you all!

Reflections of a Life Worth Living: 2018

As 2018 draws to a close I am compelled to reflect on our lives this past year. While Art has endured some tumultuous times with his LBD and newly acquired, unpleasant symptoms, we carry on despite the debilitating and trying issues that plague him. He is not one to give up and give in; not now, not ever. So it is in this vein that I refuse to dwell in the negatives, but rather, quietly contemplate the many positives that we have been blessed with this past year.

We have always loved to travel, and with the help of our family, we were able to engage in our favorite past time once again; albeit, not too far away.  New Hampshire’s majestic White Mountains has long been a cherished area for our family, and thankfully one we were able to visit and share in its beauty not once, not twice, but three times this year. Always with each other, always with family, always enjoying its peaceful serenity; it never gets old for us.

While I couldn’t envision traveling by plane with Art anymore, our son David helped to make our June trip by plane to Washington D.C. a reality. The logistics of such a trip with the various health issues and emotional barriers (having to succumb to the dreaded wheelchair at the airport, for one) were addressed and dealt with by Dave. He basically took care of his Dad on this trip, granting me a huge relief that allowed me to relax and enjoy myself. We didn’t want to miss the wedding of a very special young man and his lovely bride, and so we were able to see Russ and Sondra married in the spectacular surroundings of D.C. I still am amazed that we pulled this one off!! Thanks Dave!

This fall we spent a few days in lovely southern Vermont, visiting with my sweet niece, whom we have always been close to,  and her beloved James. Art was great on this short road trip, and we loved exploring an area that we hadn’t ever spent time in before. One incredible thing happened on the morning we left for Vermont: we picked up a brand new state-of-the-art  walker for Art! An amazing feat by itself, as he despises and usually refuses to use any kind of walker.  A simple cane is enough in his opinion for his stability issues-it does nothing to stop him from falling, whereas the walker would. We ordered the fancy new walker shortly before we left, at  his thoughtful caregiver Doreen’s prodding and encouragement. I can encourage all day long, but when she does it…it works. She is like magic with him (for this I am eternally grateful). So off we went, with his sweet new blue rollator walker, with a seat, a basket, and brakes. Cool stuff. He successfully (if not a bit tentatively, initially) used the new walker at the Yankee Candle Company’s massive complex in Deerfield, MA, and later at the Vermont Country Store (which by then, he had become a pro at). Of course using this newly acquired walking aide and growing increasingly comfortable with it, Art then began to notice all the walkers being used by others he encountered, as well as their owners. Always the jokester, he called out to elderly ladies, challenging these unsuspecting and seemingly uninterested tottering, venerable seniors to a “race” with their walkers, garnering  humorous, surprisingly  sly, crisp, witty responses from these enchanting women. The walkers they used were much cause for comparison, to which by the end of our trip my ever competitive husband decided he needed a newer, more compact, more pricey version. Of course…now if I can get him to use it at home.

Thanksgiving saw us entertain a  houseful of twenty-five guests. It was sheer heaven for me, a bit of an emotional challenge for Art, but it  all went off without a hitch, as everyone pitched in to  make the day a success. We entertained family and friends from Austin and Houston,  Texas; Washington D.C., and Pennsylvania, as well as Boston, along with our own family of ten.  I do love to entertain, and Thanksgiving is our favorite holiday. This Thanksgiving was especially blessed-we celebrated with (most of) the Owen family, our friends for 30 plus years that we have had the privilege of sharing many Thanksgivings (and Easters) with in the past. Since they moved away more years ago than I care to count, my family has missed the engaging company of this beloved family during these holiday gatherings. Reconnecting once more for this turkey day with our cherished friends was more memorable and momentous than words can convey.  This Thanksgiving was one for the ages, as each family has grown exponentially, with additions of daughters-in-law, and grandchildren on both sides! We loved every minute.

I would be remiss if I didn’t mention Art’s annual Lewy Body Dementia Art Show fundraiser, in Foxboro, MA. Although it was set on a weekend that is a traditionally busy,  three day (Columbus Day weekend) travel weekend for many of our friends and family, we still enjoyed a great weekend, and a successful one for the LBDA, as we raised over $3,000 for the cause. Some folks popped in to surprise us, which helped to  make this an amazingly exceptional  weekend. My niece Melanie and her beau James traveled a few hours from Vermont Friday night to be there for the opening, and Art’s friends from his  work days showed up-Eddie and Meg, and Lyn, just to name a few. Thanks again to all who supported us in our annual venture to raise money for Art’s illness, you mean a  lot to us!

Lastly, this Christmas season saw us being visited, texted, sent cards, receiving calls, and being given gifts, from many of you. We were NOT left feeling alone -your love and generosity instilled a sense of caring and remembrance.  Your faithfulness to us leaves us with a full heart-though we are not always able to socialize with friends as  we once did, your benevolence and giving of your time demonstrated that we are not forgotten. We received oodles of wine (YES!!), a bottle of Scotch whiskey (Oh yeah, baby!), baked goods, candy, and a personal favorite of mine-our Christmas card revamped with just Art and I  (holding our two youngest grand babies) in the shot, with a message over us that said: “Rare sighting…Santa and Mrs. Clause!” This simple thoughtful act took a little time, and  let us know we were  thought of, and truly made our day!! Thanks  to all who pray for us, and do what they can for us-from trips to Boston to Art’s specialists, to relieving me to enjoy a night out with friends, to simply sitting with him while he paints, spending quality time with  Art. These gifts are special to us.  We love you all, and appreciate your willingness to give of yourself in your own special way. We are truly blessed to have a bevy of extraordinary friends. May your 2019 be filled with all the best!!