Lewy Body Dementia: One Day at a Time

Our story unfolds

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.





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.



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!






Making adjustments…

It has been a little over a month since I have written anything on this blog, so I figured it was time to share our lives once again with our friends and family, near and far. Art is still struggling with the uncontrollable harsh effects of his severe body tremors, with each attack coming almost daily now. Instead of being able to predict the days when an attack would be eminent, as I once could (four good days, followed by three bad ones), now these heinous sneak attacks come nearly daily, unrelenting and seemingly unprovoked at any given time during the day. I am thankful they last for no more than 45 minutes (!) and often only ten to fifteen minutes, usually two to three times a day. But they can still be violent in nature, however short lived they may be. Still, for six weeks now he has been off the medication that could potentially be causing these disturbing, frightening symptoms, and we cling to the hope that this will be the week to have the attacks subside. The medication needs to completely leave his system before we will notice any difference. I know we are not promised a perfect life, but one in which he does not suffer so crushingly  would be appreciated.

We do occasionally make plans with some friends still, but with the understanding (thank you trusted friends) that we may not be able to follow through if Art is having an especially bad day. It’s all about making those little adjustments…Trying to maintain any semblance of a  social life as a couple is a challenge at best, if in reality becoming painstakingly non-existent, with the exception of our family, whose flexibility and devotion never ceases to amaze me, leaving me feeling well loved and cared for. There is no expectation with family,  he can simply be himself, regardless of how he is feeling. The prospect of going to a restaurant and having his body begin shuddering violently is devastatingly embarrassing for this man who always faced life with the of a crack of a joke filled with disarming wit and sarcasm. There is something about dining local and fearing running into friends and acquaintances that serves as a natural deterrent. Better to go where no one knows you…But he is content to hang back at home, and allow me to go forth and enjoy my friends, savoring dinners and breakfasts with warm, caring friends, while joyously laughing with the girls over silly, insignificant things. Those are trueIy carefree moments. I must admit, I do not fear him wandering away while I am out, as walking tends to be more of a challenge these days, and too exhausting to be an option for him. He is still relatively ok to leave at home alone, although the occasional dementia episode can steal his sense of calm and set fear inside his mind. In reality,  I know these days of leaving him alone for more than a few hours are drawing nearer to an end. He remains in the house alone while I have gone back to work with an altered work schedule,  three days one week, two the next, and so it goes…He occasionally thinks he hears me come home mid day, stomping around the house, and when he comes upstairs and searches for me, calling out my name with no response, only to be greeted by a silent house, it is disheartening for him. He is often angry with me when I return home because he is sure I was playing tricks on him, hiding when he called my name and I did not answer. To quote him, “It’s NOT funny!” No amount of “I was at work” will suffice, because it seems all too real to him. Dementia does that to my husband.

I have been given a gift of love- a much anticipated weekend away with five of the most caring, generous, fun-loving ladies around! I am thankful for my family to afford me the opportunity to escape this weekend to Maine on this blessed excursion! While I am away Art will be lovingly and carefully looked after by our younger son Dave, as I steal his sweet wife away to accompany me on our weekend foray. I know our older son Kevin (and Caitlin) are close by, and will be there in a heart beat if the guys need him (them). I am forever grateful for this special time away with some of  my “besties,” and I am thankful to these ladies for wanting to whisk away with me! Our country inn and the British teahouse awaits us….I’ll bring the wine!

Now lest you think I am forgetting all about my guy back at home, and partying wildly with my girls, think again! A refined, historic country inn and a lovely British teahouse are hardly considered wild affairs! Think of it as scoping out my next weekend excursion-one in which I am indeed taking Art. You see, we ladies are staying two towns away from my next three day outing; the next time I go away Art and I will be in New Hampshire’s majestic White Mountains. I have a goal to get Art out each month to a destination for a couple of nights. Simply relieving him of these same four walls will be a welcome change. I hope. He stays in most days, and has not ventured out unless invited by some male buddies, which has not happened often as of late.  He is still enjoying oil painting most days, however abstract they are increasingly becoming. Once upon a time we could land at a bed and breakfast and take to the third floor with no problems. As long as a jacuzzi and a fireplace were involved, we were happy! But as this entry today says, it is all about making adjustments. Instead of the standard fireplace and jacuzzi, I seek out first floor rooms,  preferably with a private entrance, and a handicapped bathroom ensuite. If he is struggling, no one will be the wiser, as we can enter and exit anonymous. A plus is a wraparound deck, where we can sit idly and enjoy the crisp fall air, sip hot apple cider or coffee, and maybe read a good book. I promise to bring his coveted travel mug if he gets the shakes. God bless the maker of these little gems! Slip a straw inside, and he can enjoy his warm beverage without the worry of spilling on himself, or someone else. The foliage in northern New Hampshire should be spectacular in early October, with the mountains ablaze with vibrant reds, yellows, and oranges. I simply want us to soak it all in.

I look forward to all that New Hampshire’s fall has to offer- pumpkins, maple syrup, apple cider donuts, and smell of freshly fallen leaves in the cool morning air is worth the 3-4 hour ride. I don’t know how long we can continue to traverse away from our home as such, but I am determined to make the most of these times that we spend together. He may not remember that I am going away with the girls this weekend; I tell him daily, but he often looks confused and quizzical when I remind him of my upcoming trip. Too much information, he can’t take the overload of the details of it.  To say he is aware of our own impending outing together would be pushing it. He does not. Each time I mention it, it is like he is hearing it for the first time. So, when it is our time to travel we will take it slow, and just relax and absorb the beauty in God’s spectacular canvas before us on our hopefully peaceful weekend away together. Blessings to you and yours as the fading sun sinks down behind the trees as I write this, as I anticipate some much needed time away, both with and without my beloved husband. Life is all about making adjustments, and we are taking it one day at a time.


Traveling with Lewy Body Dimentia

So what is it like to travel with someone with Lewy  Body Dementia, you may ask? Well after recently traveling with my husband who suffers this unpredictable disease, from Boston to Houston, via United Airlines, I feel fairly equipped to answer that question. Let me give you a snapshot of day 1 (I promise, only one day here!): Limo pick-up perfect! But then again, our driver is a close friend who often accompanies us to and from our Mass General Hospital appointments, who just happens to drive limo for the same company Art did prior to his diagnosis. Walter, ever the early bird, arrived (as expected) 15 minutes earlier than our requested time. Let’s check that time….5:15 a.m. The other former limo driver in our family was waiting outside smoking a cigar when Walter arrived. Yes, my love still smokes those nasty things, and as much as I detest it, I will not deny him this simple pleasure when so much else is out of his control. Onward to the airport with the sun rising before us…

Once at the airport a wheelchair was procured by our favorite limo driver. I wondered if anyone else around us thought it weird that our limo driver retrieved our luggage and then gave us each a hearty goodbye hug. (Who is that limo company again? Their drivers sure are friendly! ) Once inside, the airport personnel jumped into action pretty quickly, and we had our efficient escort in no time at all, which proved beneficial all the way around. We breezed through baggage check and security (Art never having to leave the wheelchair)-the first time ever his C-PAP machine glided seemingly unnoticed through the  x-ray machine! This escort was truly amazing-we never had to so much as hit a counter or machine-he did it all for us! All I had to do was just stand and watch over my guy in the wheelchair! With all the usual hurdles passed, he gently rolled Art right into a nifty spot directly beside the desk at our departure gate. No questions asked. We were there, we had arrived with minimal effort on my part and topnotch efficiency on this gentleman’s part. Makes it all seem pretty seamless and easy, right? Well, maybe for one of us…

You see, the unexpected tends to make the Lewy Body sufferer incredibly nervous, and anxiety plays a huge part of bringing on an attack. That morning, Art suffered one of the worst attacks he had ever experienced. While he knew where he was, he was often confused as to what our escort was doing, asked more than a few times, “Why are we here?” and “What’s happening?” all the while his body was writhing with unforgiving jerks, making him feel like all eyes were glaring at him, judging him.  He struggled to speak, but once he managed to get the words out they crushed me to the core. “They must think I am a drunk with the  D.T.’s.” With those heart wrenching words expressed, he cupped his hands around his eyes, so he couldn’t see what he felt must certainly be throngs of gawkers, unmercifully staring at him.

Thankfully we were allowed to be the very first to board the plane. That in itself was an experience, as the wheelchair goes to the plane, not on the plane. There is little room in the isle for it, and thus, Art had to take the long, rather halting, tough walk down the narrow aisle to the back of the plane, where our seats awaited us. What a blessed relief they were! We learned sitting in a window seat works best for him, as he continued throughout the four hour flight to suffer the severe jerks and tremors that had horrendously invaded his body. He could lean on the window/plane to help control his severe movements, which tends to help slow things down for him. Putting my arm on his shoulder, even better around him, helps as well. As he put it, “I feel like I am not going through this alone when you have your hands around me.” And so I do. Being in the window seat meant the person feeling the full effects of his tremors would be me, and not the person on the opposite side of me. Also, he feared his uncontrollable body  movements would have been knocking into the stewardesses and others in the aisle as they made their way past us. Thanks to our physical therapist and occupational therapist friends-we  listened and did this right! Inner seating a must!

Deplaning means waiting to be the last people off the plane. The wheelchair was a welcome sight as we maneuvered our way around with our new, eager to please young escort. This was day two on the job for him, and he was still learning where everything is. We eventually made it to our fairly cleared out luggage carousel, again last….but hey, our one piece of luggage was on it, so score!! I was especially happy to see my brother-in-law Barry walking towards us as soon as I had snatched up our suitcase! Yes, you read that right-one suitcase for an entire week. Also, one carry on. That’s it!! Being seasoned, veteran fliers we have learned to economize our luggage over the years. That in itself was a blessing this time around! Not having too much to schlep around was heavenly! We were afforded door-to-door service using the wheelchair-from the door of the plane, to the door of Art’s brother Bob’s pick-up truck. I can’t say enough about the support and assistance United Airlines provided, as well as the two international airports we traveled through.Things I have learned as a result of this flight: most people are glued to their technology in this day and age, and barely even notice you. Additionally, people are in general kind and helpful, regardless of what you may have heard before! Oh yes, and lastly, when the person on the aisle seat next to you asks questions, and you (me) share a bit of your (mine) faith them, they just may surprise you and share a strong faith in God as well. So Hannah, our lovely, curious,  twenty something young seat mate, who is headed off to Antioch College in the fall to begin her studies on the brain, thank you for telling me that sitting next to  us was “A blessing.” I can assure you, it was indeed a blessing sitting next to you.



What happens when the caregiver needs to be cared for…it opens the eyes.

This past week the tables were turned, and I became the physically challenged one in need of constant assistance: I had thrown my back out and no matter what I tried to do, I was in excruciating pain. I went from constant caregiver, to needing constant  care myself! I was given the opportunity to see and experience life from the other point of view…not so fun, I have to admit. I am normally an on-the-go lady, rarely stopping to sit still, so not being capable of  even engaging in the smallest of tasks that I am used to and quite frankly, always have taken for granted, left me at times embarrassed, frustrated, exhausted, and more importantly- with a new-found awareness and appreciation of what my husband must go through nearly everyday of his life.

I am thankful he had some “good days” during my time of incapacitation. He was the one who waited on me for a switch! Getting up from a sitting position was a crushingly painful ordeal, so I was brought my drinks, lunch, snacks (only when he was getting some for himself-I wasn’t a total pain in the neck!). While I admit it was nice to be waited on at first, honestly this got old pretty quickly when all I simply wanted to do was to stand and walk to the counter unaided-something he often needs assistance with as well. He had to pull me up to a standing position, and see if I could indeed walk unescorted. While he is never completely able to walk without a cane or my arm, he quipped that we were “the lame leading the lame.” Indeed, we were quite a sight. Going to the bathroom…let’s not even go down that road!!

All of this was indeed quite frustrating for me, especially when I had committed to watching my energetic, non-stop, fearless ten month old grandson. We quickly realized with both of our glaring limitations, this was going to be nearly impossible. So I was faced with a harsh choice that I tell him we need to make sometimes…ask a friend to help. This is a tough thing for a man to  accept, and when it is me asking for help with him, well it is not such a big deal to me. I assure him it is okay, and he always dissents, but I win out each time because ultimately, it is me that is in need of assistance for him. Male friends drive him to coffee with the guys on some Thursdays. I have no problem with this. This was an obstacle he had to deal with and overcome, seeing as he no longer drives. He absolutely loathes having to ask for help from others. Now the shoe was on the other foot, and he was telling me he could not (and I know this) offer much relief concerning the care of this incredibly active baby, and since I could not pick my 22 pound grandson up, or chase him around, I needed to accept help for my own impediments. Wow. Turnabout is fair play, but boy is this a load of garbage to deal with.

So twice this week I had committed to taking care of my adorably “busy” young grandson, and twice I had to suck it up and call others for help. Accepting that I could not do what I love to do most in life, playing with my grandson and caring for his every little need, was a total blow to my female nurturing ego. As a loving grandmother, I pride myself on  the natural return to those basic maternal instincts as when I was raising his father. They all flood back automatically-and I cherish these times when I am building up the bond between my grandson(s) and myself. But I was smacked upside the head with the stark and bitter reality that I (we) could not do this alone. Yes, I bit the almighty nasty tasting bullet and sought some much-needed outside support, but not before contemplating how dismal I felt and how grieved it must make my beloved husband feel each time we make that similar call for him. This week I took a small step forward in understanding what he  goes through at times, and for that I am grateful. I do not claim to be able to alleviate this stressor, but at least I can better understand it and sympathize.

The days ahead will be met with more pressing needs as we deal with the burdensome demands of the unyielding effects Lewy Body on my husband.Yes, I am sure there will be more times when we can not deal with everything life throws at us alone.  I am thankful for trusted friends and family who are always there for us. To my ever loyal, caring friend Leslie, and my sweet, reliable teenaged friend Rachel, a HUGE thank you for answering my desperate pleas of need this week!

Blessings to you all!



Our Changing Lives…

Burns Night

For quite sometime I have been toying with the idea of writing a blog. My son and daughter-in-law have their own website for blogging, and my other daughter-in-law writes for the well read Boston Mom’s Blog, so the inspiration is great to add my name to this ever growing list of bloggers in my family! The reason I have chosen now to begin this blog is indeed our ever changing lives.  Life does not stand still, it marches on, whether we are ready for the changes of not. Sometimes we welcome life’s changes, sometimes not so much. Change can be good, as witnessed by the addition of my two daughter’s-in-law into our family; and with the blessed births of my two grandsons. Our family has been added to, but so has our family been diminished-having lost both my parents over the years has not been easy, but we remember each with loving stories through much laughter and occasional tears.

Once again our family is facing challenging changes ahead-this past winter my beloved husband of 38 years was diagnosed with a degenerative, debilitating disease known as Lewy Bodies with Dementia, or simply Lewy Body, as it is commonly referred to. This little known, rather unfamiliar disease was brought to light a few years back when  popular and much loved iconic comedian Robin Williams was found to have it. After suffering its devastating effects Williams took his own life. Williams was misdiagnosed as having Parkinson’s Disease, and indeed this disease falls under the Parkinsonian umbrella, but it is so much more than Parkinson’s Disease. Lewy Body has a dementia component that is often misdiagnosed as Alzheimer’s Disease in conjunction with Parkinson’s. Unfortunately one of the tougher elements of Lewy  Body is the fact that the same medications that work well for Parkinson’s patients does nothing for Lewy Body sufferers. Likewise with Alzheimer’s medications; incomprehensibly, they are ineffective with fighting off the heart wrenching attacks of dementia for those with Lewy Body. There are no known medications that work well in fighting off this crushing disease. Thus, my husband has agreed to be a participant in a brain disorder study at the world renowned Massachusetts General Hospital in Boston, in order to help future generations deal with this life shortening, horrific disease. Score one for research.

I will share my journey as a wife, partner, emotional supporter, and daily caregiver, to my husband as we forage the murky waters that the unknown world of Lewy  Bodies with Dementia has in store for us. Lest you think this blog will be all gloom and doom think again, as I am a positive person of strong Christian faith, and will share the ups as well as the downs. The intensely positive aspect of our life is the continued strength, love, and commitment my husband and myself are blessed with each new day by those around us-our children and their spouses, and especially the innocence and ceaseless love of our  young grandsons, and our many caring friends, who truly exemplify the epitome of “Let me know what I can do to help,” as help they do.

Now a word about the name…modernmimi2 is reference to the name my three year old grandson gave me when he was old enough to talk; and I thought I was going to be called “Grammie”! I should have know better…kids will call their  grandparents what they will. I am ok with Mimi. In fact, I have rather has grown accustomed to it, and when my grandson could say Grammie, we  decided together one day as he struggled with calling me by that very title, that Mimi fit me best. So Mimi it is, and fyi, grandpa is actually “Papa”. He loves it too. Modern? Current times….2? Why two grandkids, of course. So thank you for letting me share a bit of my story and this life changing journey with you. Till the next time, this is Modernmimi2 wishing you life’s simple pleasures with grace and dignity.


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