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Lewy Body Dementia: One Day at a Time

Our story unfolds

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 split; 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

 

 

 

 

 

 

Our World Comes Together

What adds special meaning to your life? Is there something that makes you smile just to think about? For us, it is our two young grandsons, ages four and one and a half. We are still fairly new at this grandparent game, having only been at it for four short years now, but have taken to it like a fish to water. The ups and downs of a life altering illness are difficult at best to navigate on a daily basis, especially with the uncertainty of LBD’s constant intrusions on what was once a full, rich life, rife with travel and outings with family and friends, filling our once busy social calendar. Even in the face of the harsh reality of a debilitating, degenerative condition, life is not all pain and suffering. Enter two bright little smiles, wide as the sea, brimming with love and excitement at visiting their Mimi and Papa (lovingly named by our oldest grandson, instead of the more traditional grandma and grandpa).

My husband no longer smiles often, as the ravages of his disease has robbed him of this very simple act. Once an automatic response to life, LBD patients seem to  have this natural ability inhibited. They don’t even realize it. His countenance is often droopy and sad appearing, or worse still-distant and not present, as though you could wave your hand in front of his absent expression, the blank stare, and never be noticed. But once the little ones burst through the door, excitedly calling  “Papa!” the unresponsive, other worldly expression on my husband’s  benign face begins to crumble,  replacing it with a quizzical look, gradually emerging into a  joyful grin, as the sweet sounds of their young voices call out to him, and his recognition gathers steam.

Children are God’s gift to us, and our grandchildren continually magnify that gift! We are blessed beyond belief to have these cherubs in our life. Thankful that they live a short drive away, our visits are often, boisterous and loving, filled with hugs, kisses, snuggles, and yes, occasionally defiance. The dreaded “No” word sneaks its way into some visits, often through the chiding and teasing of a toddler towards his grandmother-“Mimi”-me. Make no mistake about it, Papa is the hands down favorite of the younger grandchild. Ever since he was a babe in his Papa’s arms, he was clearly enamored with his grandfather, often reaching up his soft baby hands and caressing his Papa’s clean shaven face (which of course was always shaved just for this little tyke when he was due to arrive). So where does the “no” come in? Oh that’s when I ask the Papa’s little man for a kiss, and he unceremoniously  declares “NO!” and unabashedly races for his  Papa and plants a great big wet smooch on his cheek! What a tease! What a Papa’s boy!! What an ego booster for his Papa! How he brightens his Papa’s day! How could I complain?  The emergence of the loving expression that graces his Papa’s beaming face is all worth it!! I can only imagine the tender warmth that is instilled by this little one’s affection on his Papa’s soul. These are the times when I see my husband’s eyes bursting with tearful emotion. What a blessing.

The love and devotion shown my husband by our adoring little ones continually fills my husband with much needed pride and joy. He lamented over his diagnosis a year ago that the grandkids would begin to fear him, as his once able mind and body was obviously now failing him, and he feared he was frighteningly becoming a shadow of his former self. The day did come when the four year old point blank demanded an explanation from our son after watching his Papa struggle to walk and speak, as well as being fairly unresponsive to the flurry of playful activity surrounding his  Papa. With an unrelenting tone of insistence, filled with an incomprehensible  determination to get to the truth, he emphatically asserted, “Daddy, what is wrong with Papa?!” Our son took a deep breath, looked at me, then back to our grandson and quietly announced that “Papa is old.” Whether this is politically correct or not, does not matter. This basic explanation appeared as an eye-opening revelation to our young grandson, and an immediate understanding of his Papa’s struggles flooded his innocent, compassionate face. Pure and simple, without need for further explanation. For now, it is all that is needed.

The grandkids both race to help their Papa in times of need. It is both a blessing and hilarious to watch the littlest one step inside his Papa’s walker and stroll it over to him, then attempt to use it as a jungle gym. Pretty ingenious, really! He also loves to find his Papa’s canes and carry them over to him, all the while looking much like the littlest shepherd in a Christmas pageant-all he needs is the appropriate attire to make the look complete!!

The older grandchild helps open doors, gets whatever his Papa needs, and is in general my little helper when it comes to caring for his Papa. They do not fear him, life marches on; they both roll with the flow, and deal with life with their Papa and all that it entails. They are generous with their love and affection, always ready to share a laugh and a hug with their Papa. When he is at his best, their Papa nurtures their sense of humor with silliness and fun, like helping the littlest one put his socks “on” when the little guy is being a tad bit uncooperative. “Helping” by placing the socks on the little guys hands, not his feet…alway draws a giggle from the kids, and a lighthearted,  gentle admonishment from the older grandson, “Papa!!” (Always followed by much laughter from everyone). The mood is instantly changed and the little guy allows his Papa to actually put his socks on the correct way after a few “misguided attempts” by his Papa (on the ears, the head, the nose…). They love their Papa, and who could blame them? He is a great Papa, who loves his grandchildren dearly. I know they feel his love, and overlook his shortcomings these days. To them, he’s simply their Papa. They love him unconditionally. We should all love like a child.

Lewy Body Dementia: The Artist Within

Sometimes the most fascinating people in the world to listen to are the ones who struggle to speak at all, whose body is crumbling, cheating itself of its once natural vigor and vitality, making simple communication the most seemingly insurmountable obstacle . The challenge thus, is to dig deeper to be heard, though their actual voices may not be used to convey their messages. My husband is one of these people. Art suffers from Lewy Body Dementia (LBD), a heartbreaking disease that robs its victims of life’s most precious, basic daily functions that most of us take for granted. Words often fail him. But still, he speaks volumes, just not in the traditional sense of communication. Instead, my husband, Art, presents his most eloquent and profound voice through his stunning, transcending oil paintings. Whether a portrait, a landscape, or an abstract (on his most troubling days), we are left to  experience the simple beauty and compelling expression of his undeniably prolific talent.

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What makes Art’s ability to paint so unbelievably amazing is the fact that his arms and hands are often wracked  with uncontrollable tremors. How he attacks his oil paintings while battling these unsettling and harassing spasms  is unabashedly fascinating and inspirational. Art uses a few tools to help him better steady his hands as he paints: an artist’s tool called a mahl stick, which has some bulk on one end to keep the artist’s hands from bumping the painted surface (in his case a significant threat) and aligns and guides his hand as he paints; a tennis ball, that appears to be speared clean through by a paintbrush for those days when his hands will not cooperate with gripping a small, fine paintbrush (stiffness of hands, legs, arms is also a distressing and inhibiting aspect of LBD). Art is able to place his hands more easily around the ball, bringing his fingers gently together to meet at the base of the paintbrush, allowing him more concerted control  to continue diligently  striving his focus on his innovative creations. Ultimately, his most single, significant tool-simply using his fingers to freely experience the virgin touch of the paint to the canvas to produce from his imagination a masterpiece of inordinate dimensions. These are often the more abstract, colorful, free flowing works or Art. Some might call it finger painting, I call it genius.

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Art has a mission every day-to paint. Each day he awakens to reach deep down and uncover his talent by seeking his vision, his originality, and his imagination. When he was given this debilitating, degenerative, life shortening sentence of Lewy Body Dementia (LBD), he could have curled up in a ball and withered his time away, angry and despondent. He could have given up. But instead, he reaches out daily to discover new meanings in life through his artistic abilities. Painting engages him in life, and gives him a purpose. Without his painting, I shudder to think how he would have responded to life’s LBD curveball.The fact that he suffers tremendously from LBD makes these  spirited gifts of art an astounding and treasured legacy.  If you have been lucky enough to be gifted one of Art’s magnificent works, cherish it, and know you were given a little part of his soul, and have played a loving part in his path that makes his endeavors all that much more powerful.

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A new year, venturing forth

Happy New Year! I can accept those words with ease and calm, and pray for the best. Lately I have read (social media) such toasts to the new year as,  “Here’s to the best year yet!” and “2017: The best is yet to come!”. I admit to feeling a deep,  agonizing pang of sadness in my heart as I hear those words now, for I know that those are impossible words for Art and I to lay claim to. And yet, it feels oddly uncomfortable to deny them, as it is my nature to embrace the positive. I have always looked to the future with unknown excitement  and anticipation, as if I were a kid racing down the stairs on Christmas morning to discover all the joys of the unopened treasures that await me.

Unopened treasures come in different packages these days.

They are often onerous to uncover, challenging to say the least.  I am not always mindful to seek out these veiled gifts,  shrouded in disguise to the oblivious (me), as we painstakingly plod through our daily lives with Lewy Body Dementia (LBD). But they are right there in plain sight, I just have to contemplate their simplistic glory, look a little harder to behold their  gracious beauty and marvelous wonder! But these precious gifts we could so  easily overlook are a blessing waiting to be revealed.

The twinkle in my husband’s eye that is shining brilliantly as he is  on occasion still able to hoodwink someone with his mischievous banter, the comical wisecracks and witticisms that spill forth from an otherwise blank expression. The sound of our littlest grandson whispering in the most adoring voice imaginable, “Papa!” at the sight of his beloved grandfather. The sudden bear hugs and unprovoked “I love you, Papa!” from the older 3 year old grandson. The joking ease of unabashed, delighted  acceptance of the arm of a pretty girl (our daughters-in-law) to help steady his gait. The occasional lusty comment made by Art towards me, with the now standard good natured declaration by our daughter-in-law, “Art, I’m RIGHT HERE!”  The gentle, chiding banter of our sons as they engage their dad in  a round of their own special brand of lighthearted playfulness. All in a days work, all there for the naked eye to see, hear,  and appreciate.

So for 2017 my wish is to pay closer attention to the little things I once took for granted as simply our relationship.

I am no longer able to have meaningful conversations with my husband, too much information creates an immense sense of painful overload, causing him  much strife and confusion. Decisions are mine and mine alone, as he has been deemed by medical personnel as no longer capable of making a viable decision. I am watching him slip away emotionally, intellectually, and physically. So it behooves me to seek out the simpler pleasures each day; our uncomplicated treasures. I pray to recognize them and quietly bask in their glory.

Blessings to you and yours in this new year.

Chris

 

 

Support, while falling without a net…

Wednesday night I took the plunge and headed into the uncharted waters of a Lewy Body Dementia support group. I was thankful to have my good friend Leslie by my side for moral support-being a nurse, she brought her  own sense of professionalism and expertise to our small group of caregivers. We were indeed a small group-six in all-far less than I had anticipated given the fact there are only two support groups for this disease in the state. I was the obvious newbie, and immediately offered the floor to share my husband’s story. As I concluded my  emotional saga and took my turn at listening, I was humbled, saddened, and ultimately struck by an immense sense of relief from those who are still coming to the support group, even though their loved ones had passed already.  The  meeting was more comforting than I anticipated, although honestly, I was not quite sure  what to expect. I learned from other’s wealth of experiences as they have travelled this heartbreaking, and emotionally draining path with their loved ones; two having already lost their spouses, one whose wife was not expected to last even the week, and one with a parent still functioning fairly well with the disease at 87 years old. The consensus was that my husband was profoundly young to suffer the ultimate ravages of this disease. My takeaways? Don’t trust that my loved one will never wander out on his own and scare the bejesus out of me, take care of myself (easier said than done), and that I am not alone in this battle (hence, the comforting aspect). I feel like I have gained a trusted new community, one who has walked in these very shoes before me, and can truly understand what  I am going through these difficult days.

That was Wednesday night. Thursday night was a different story. Art loves a good soak in the tub, especially when the arthritis in his back and shoulders flare up, as it was Thursday all day. I have shared (rather strongly) my dislike of baths for him of late, in light of his imbalance and lack of physical stability. That being said, he filled the tub to the brim and climbed in to enjoy his steaming tub of de-stressor  bath salts. With his book  set up, and his reading glasses on, he was set to savor this heavenly time of relaxation. All was quiet for quite some time until I heard a sudden blustering crash from the bathroom upstairs. My heart skipped a beat as  I instantly fled up the stairs with panic coursing through my veins…

As I dashed wildly into the bathroom I was met with the uncanny image of my seemingly peaceful husband lying back, eyes closed, body completely still, with his head against the back of the tub. If I didn’t know better I would have sworn he had simply and peacefully drifted off into a restful sleep. But clearly this is not what happened. The scene before me felt eerily wrong. “Art! Art!” I screamed, to which he snapped up,  and startlingly became fully awake. He had no idea what had happened, except that he had an instantaneous massive headache. Within minutes I had the ocean of water sopped up from the floor, was gently and quaveringly helping him out of the tub. I called my son Kevin, who dropped everything and came rushing to our aide. After the affirming call to the doctor, we were on our way to the local E.R.

I won’t prolong the agony of our experiences, except to say that the hospital personal was attentive and thorough. After a CAT scan and many tests, he was deemed to have no visible or detectable injury, thankfully. That being said, they cautiously encouraged us to leave him to be admitted so he could be “watched” overnight, just in case. Just. In. Case. Not comforting words. So Art was admitted, and we left behind a rather unhappy patient that night…The next day I expected to simply take him home, as no alarming calls came during the night concerning his condition (you know, “just in case”), leaving me to believe he would easily be released come morning. But after the physical therapist examined him, the “release” papers skidded to an abrupt halt! The fall had taken much more out of Art than anyone had realized, as he struggled to even sit up. Once standing, he was barely able to walk ten feet from the bed, none of which was unassisted. That day he slept for nearly the entire time he was hospitalized. There was an effort made to have him admitted to a physical rehabilitation center, but due to several factors, it did not come to pass. So by 5 p.m. we had secured the services of the same Visiting Nurse Association we had used last spring, was given a wheelchair (that went over big!) and a commode (which actually did go over big), and was allowed to leave the hospital with the understanding that Art would use the walker we had at home (which served no purpose other than as dust collector until now) and he would not be left alone until the physical therapist could improve his ability to walk.

So after that fun…ok, not so much fun, we are home. We have been blessed with friends who are willing to step up to the plate and stay with Art while I am at work, and for that I am so incredibly grateful. The V.N.A. came this morning-and we are entering a new and more  frighteningly uncertain phase of Lewy Body Dementia (LBD). There are many more critical decisions that need to be made regarding Art’s care and safety, and we will be addressing them as a family  ASAP. I am not looking forward to seeing what this winter has in store for us, as I fear this was just the first of what will surely be more trips to the E.R. due to dangerous falls for Art, considering his poor  mobility issues. Physical therapy can help, but it will not be a magic cure for his balance problems. This formidable fall set him back, make no mistake about it. The real test will be how he handles things emotionally in the coming days and months, as we move forward into the unknown waters of LBD.

 

 

On Being Thankful…

This week we celebrated Thanksgiving, a day our family has long enjoyed the tradition of inviting others into our home, to share in our blessings and offer the warmth of heart and home, and of course, massive amounts of mouth-watering food! We are an eclectic group, not necessarily all blood related; from the barely one year old, to the mature, grandparent aged, but on this day, all are welcomed as members our extended family. This year was no exception! We entertained a group just shy of 20, unless you include our “grand dog”, who makes it an even 20 guests (dogs count, right?). It was a day well planned for, and kept abreast of by way of my ever-growing list…”Where’s the list, Mom?” Check. Check. Check. Done! It’s all good, and ready to go…Thank you to all who helped, who came early and chopped, cooked, and assisted in many ways, even those supplying the  edifying banter. Always helpful! Overall, the day went off without a hitch! I had threatened to recreate the hilarious Saturday Night Live “Thanksgiving-Thanks Adele” skit if any unpleasant political conversation commenced. Luckily, our family’s rendition of “Hello” never had to come into play. That being said, let me move onto to the point of today’s message-on being thankful. In spite of everything, I maintain we have much to be thankful for in our family. Life goes on without stopping unless we purposefully stop and consider our many blessings. Here are some things that I am thankful for this fine day:

I am thankful that our sense of humor remains fully, and benignly, in tact, as a loving couple, as a devoted family with our sons and daughter’s-in-law (and our precious grandchildren), and with our loyal, ever diligently, caring friends. Laughter fills our home daily, as we can not help but engage each other in comical banter, often gently teasing the other in love. Art is most adamantly the instigator of such merriment, often jovially offering his services with a twinkle in his eye, where they are no longer permitted: “I’ll cut that” (this after having sliced his shaking hand open trying to cut a melon) or “I’ll drive!” (That ended in January.) To those who do not know my husband, it may seem sardonically cruel to suggest such things that he is no longer allowed to do because of his illness, but to him, it is willfully flying in the face of adversity. Laughter will keep us grounded, humor gives us relief. It is as easy as that.

I am thankful for the good days. Thanksgiving was  a good day. What can I say? With family and friends from Texas, Connecticut, Pennsylvania, and Massachusetts all surrounding us with love and acceptance that day, Art was much more himself than he had been for days prior to that.  With minor, barely noticeable  tremors, memory, intellect , and wit in tact, only his balance garnered him a struggle and some strife. Most of the day was a win-win for him;  having even offered the blessing at our considerable Thanksgiving gathering. Good days, it is what we pray for and graciously accept with much contentment and bliss.

I am thankful for the support of friends and family. I know I have touched on this before in my blog, but it bears repeating! When I called my son Dave and inquired as to what time he and our lovely daughter-in-law Jolin would be arriving on Thanksgiving,  he quickly and candidly responded with a gentle sensitivity, “When do you need us to come?” They were here at 9 a.m., ready to chop, cook, bake, prepare…whatever I wanted them to do. I appreciate that these two have the luxury of availability, not being parents to adorable, albeit an occasionally demanding toddler and preschooler, as my other son Kevin and sweet wife Caitlin are.That being said, Kevin quietly and with  uncompromising love lent a hand carving a turkey, as I had given each son the task of slicing one of the two birds we had cooked for dinner, a job always attended to by their father, appropriately passing the torch to the next generation…Both boys and daughter’s-in-law served our guests generously and attentively, preparing food, keeping a watchful eye on their father-in-law and instantly being at his side when needed. I couldn’t ask for more.

Lest I neglect to recognize the support of friends, such as  ride for  Art to enjoy coffee with the guys each week,  a ride for both of us into Massachusetts General Hospital for doctor visits, for those who spend time visiting with Art while I am at work,  unabashedly offering an arm to help steady him when he needs assistance, or texting daily to “check in” with him, which gives him  more pleasure than anyone can imagine…(that is for my sister-in-law Kim, in Texas, who engages in lightheartedly texting wars with Art everyday. Love you Kim). We are thankful for those who offer kind words of encouragement, and heartfelt prayers on our behalf.

We are thankful to you all and love you. Blessings.

Chris

 

Love is patient, love is kind… Love never Fails.

1 Corinthians 13:4-7: “Love is patient, love is kind. It does not envy, it does not boast, it is not proud.  It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.  Love does not delight in evil but rejoices with the truth.  It always protects, always trusts, always hopes, always perseveres.  Love never fails.”

These simple yet significant verses have adorned my kitchen wall for many years now, so long ago that I cannot recall when I purchased the picture with them on it and hung it by our kitchen table. I remember when I first got the picture, I loved it so, looked at it and read these verses every morning with a thankful, humble heart. But as the years rolled by the picture with these powerful verses waned slowly down to a quiet fixture in my kitchen, gradually replaced by a busy household filled with sports, scouts, church, choir, transporting kids everywhere, and socializing, both with adults and for our children. Over the course of time the image simply became a vague reminder once in a blue moon of the sacred, hallowed verses; I barely noticed them anymore in the daily hub of activity in our home. But the verses remained, even when a friend criticized my dated wall decor. Something tugged at my heart, and though my kitchen has been remodeled to meet modern times, my wall decor by my table remains constant.

Nowadays our house is largely quiet, but for a few days a week , when we get to enjoy the treasured chaos of  two lively little boys (1 and 3 years old); our cherished and utterly loved grandsons. And then…the slow, invasive disease that has wracked my husband’s brain and body made its heartbreaking presence known to all. Again, the verses remained peacefully silent, waiting to be noticed. Then this morning I happened to look up and there they were…I reread each one with a renewed sense of abundant joy in my heart! Now my mind is flooded with the overwhelming outpouring of love we have been blessed with by friends and family over the past several months since the shock of Art’s harsh diagnosis. I feel compelled to share  some of these blessings we have received with you now.

I am thankful for a family, immediate and extended, who loves and cares for us; our children and their spouses especially, to say nothing of those two sweet grandkids- who consistently see their Papa (Art) as affectionate, tender, devoted and attentive to them. Recently my oldest son helped his dad to the car, drove him home, and stayed with him until things calmed down for Art-we had been at church, in quite literally the middle of the service, and it was increasingly evident that Art was struggling to maintain his composure in the wake of violent body spasms, that had come over him unprovoked during the church service, invading his sense of peace and dignity. I had gone upstairs to deliver my grandson to Children’s Church when I returned to discover two empty seats where they had both been sitting. I immediately attempted to hunt them down to no avail. They were no where to be found. With a growing realization, I knew then Kevin had taken his dad home, to his safe haven, away from inquiring eyes that intensely disturb him. Can you guess how he wants to be guided out of the service when this happens? Without ever turning back, moving through the sanctuary face front, carefully and painstakingly walking forward, only feet from the pastor preaching on the pulpit. In this way, he never has to see anyone’s face staring at him. That is especially heinous to him  (mind you, very few actually are staring, but it’s the possibility that someone might be that fills him with unforgivable dread). So out the front of the sanctuary we go-or on this day, they went!

The fact that Kevin took charge of the situation with his dad, knowing what is best for him, brought tears to my eyes as I sat listening to the sermon. I knew I did not have to leave, Kevin had the situation calmly, and completely under control. Something jolted inside of me as I took my seat in the service, thinking of the son caring for the father, and this simply got to me. “Love is patient, love is kind….always protects, always trusts. Love never fails.” Words put into action. I was overwhelmed.

Others have given of themselves and their time, such as our younger son Dave,  who thoughtfully spent a weekend with his dad so I could get away and relax with friends, ever the conscientious and good natured son, attentive to the wants and needs of his father he made sure they had a fun time as well! Art’s brother Bobby, enthusiastically spent a great week just hanging out with Art, sharing laughs, smoking cigars, two brothers devoted to each other through good times and bad. Then there is our compassionate daughter-in-law Caitlin, spending priceless time with her father-in-law (really? How many young moms actually to do that?!) What a blessing she has been to us for the countless hours spent engaging him in conversation on her many visits with the grandkids while I am unavailable, at work. Not to be overlooked is our sweet, playful daughter-in-law Jolin, who lovingly teases Art on a regular basis , just as she always has. That makes him feel like his old self, like he is not suffering the effects of a degenerative disease. Simple, yet effective. One can never fully appreciate the value of how nurturing and uplifting this is for him! For Walter, our friend who faithfully drives us to and from Mass General doctor visits to Boston, as his continual gift to us. I so appreciate not having to drive in and find a place to park-now my focus can remain completely on Art, where it needs to be! To those gentlemen who take turns picking Art up for a Thursday morning men’s gathering at the local coffee shop, where I am sure they attempt to solve all the problems of the world. To Burton, who is not shy about lending a helping hand by slipping his arm around Art, and helping him maneuver the stairs to our house, and to Craig, seemingly our guardian angel, appearing out of nowhere time and time again to help take Art’s arm when leaving church (when our kids are not there). To our dear friend and former housemate Bill, who randomly calls asking if we need anything, milk, eggs etc…and he lives three towns away, not exactly around the corner. So many have sent me notes, emails, texts, and my classmate who sent a  thoughtful, well-timed card with a compassionate message. Many of you are prayer warriors-such a personal, immeasurable gift of love. There have been too many times to mention all of the people who have exuded those verses on my kitchen wall with their generosity and caring, giving of time and themselves unconditionally. I implore you, my reader, to go back, and reread those very verses that started this blog once again, and see if you don’t agree. These words exemplify those who care for us, each in their own way. Thank you all, we accept your kindness with a loving, and humble heart. As the last verse states: “Love never fails.”

Blessing to you.

 

Overwhelmed by the Love…

January 30, 2016

As I sit and write this I am feeling overwhelmed and incredibly blessed by the caring, kindness, and generosity I have experienced from so many of you! Over the past few weeks I have been hit with a nasty upper respiratory infection that has left me feeling lethargic and exceedingly less than enthusiastic about my duties as an LBD caregiver. The thought of forcing myself to get up from the welcome warmth of my comfy sofa  and attempt to produce a home cooked meal was nothing short of abhorrent to me. I lacked the stamina to stand and deal with chopping,  sautéing, baking, and throwing together the ingredients to create a delectable dinner. I was down for the count, not wanting, or knowing how I could continue to do everything that was needed on a daily basis  for my now physically,  emotionally, and intellectually challenged partner. Grouch became my middle name.

Since this time, the outpouring of love and support for us both has been unfathomable! Here is what we have been blessed with:

My wonderful colleagues have sent the following:

  • We have received an array of  restaurant gift cards, all places we love to eat!
  • Prepared meals from a highly sought after caterer (I used this particular caterer for graduation parties and a rehearsal dinner in the past)
  • Cards and encouraging messages to keep me going!

My snow plow guy (a family supported business) sent me the following text after I inquired as to the whereabouts of my last two bills:

  • “No charges, covered by the three eagle scouts in our house. Do a good turn daily.”
  • They not only plow my oddly shaped driveway (a bit of a challenge to park straight in, let alone plow), but have also begun to shovel our walkway since my husband fell in his tub during December. Who does that anymore? Oh wait…our guys do!!

My relatively new car (2016) received some minor body damage as I backed into my friend’s car (yes I have a back-up cam…remember my oddly shaped driveway?)  which escalated into a major auto repair bill  (hello, insurance I never use….used them this time!)

  • Conveniently, I discovered my insurance company offers door to door service for  damaged autos (does not matter if they are drivable, and mine definitely was drivable).
  • My auto repair shop came to my house, picked up the vehicle, fixed it, and returned it a few days later. Since I am the only driver, this was a phenomenal bonus!
  • I had accumulated “good driver points” and my standard $500 deductible fee was dropped to $250. I’ll take it!
  • The auto repair company waived my out of pocket deductible fee…and I paid nothing. I was speechless. Again, I will take it!
  • My RAV4 was not only repaired perfectly, but the auto repair shop washed, waxed, and vacuumed my vehicle, essentially giving it the appearance of coming right off the assembly line.

My amazing church family has sent me dinners now for a couple of weeks!

  • Blessed with delicious home cooked meals, and delightful visits from these sweet ladies of mercy!!

Notes, emails, texts, visits, etc…

  • Too many to mention here, but we are inundated with folks praying and sending warm wishes our way! We gladly accept all positive things offered !
  • We are enjoying visits from old friends that we have  not seen for a while, as well as a resurgence of visits from rarely seen, but  dearly loved,  extended family members.

Offers and help with housecleaning

  • Friends have offered and helped me clean my home! What a heartfelt gift of compassion!
  • A friend has offered her cleaning lady-what a treat to be able to contemplate this one!!

Lastly, my children (included as my children are my two lovely daughter’s-in-law) honored   me with a surprise 60th birthday party recently! Seriously, I was stunned and amazed!

  • Twenty folks (grandkids included) surrounded me with love as I excitedly embraced  each one!
  • Brunch is our family’s favorite meal to enjoy-so the fact that it was a birthday brunch gathering  was an incredibly perfect way  to celebrate my 60th surprise party!
  • Our friend Wayne hung out at home with Art, who was not up for going out that day. What a relief to know he was well cared for and I was free to just relax and have fun!
  • I was showered with gifts by my many friends in attendance-once again, gift cards for dinners, personal products that they know I love, a beautiful sweater-thank you to my lovely, thoughtful friends.

I feel incredibly uplifted…God is good, and so are His people. Just wanted to share!

Chris

 

 

 

 

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