Time marches on, and with it goes my husband’s sense of independence; a crushing blow to a once vital, strong-willed, capable man. His male ego shattered beyond repair almost daily, leaving him defenseless and vulnerable to life’s newly minted, unforgiving and debilitating challenges. His emotions run the gamut on any given day-from confused, to angry, to devastated, all because even the simplest of tasks pose an insurmountable burden. There are days when holding a fork does nothing to help the food make it to his yearning mouth. Even the special weighted utensils do little to assist with this frustratingly laborious effort. Most days walking proves to be at best a disconcerting pursuit of shuffling and imbalance; at worst, a bitter exercise in the rigidity of his limbs, resulting in treacherous crashing to the ground, giving credence to the futility of his legs as compared to what they once were.
There are days when he is shall I say…unpleasant. LBD takes the person and assaults the brain, in every direction, a type of rogue proteins, going after the individual and transforming him into someone unrecognizable behavior-wise (aside from the physical aspects). When this occurs, he is a shadow of his former self, in practically every way imaginable. But YOU, the outsider, not the caregiver, will rarely see this side of him. To you, he does what is commonly referred to as “showtime”. The LBD patient has the uncanny ability to whip himself into shape for others, not wanting to seem altered in anyway to the outside world. I saw this just yesterday, when the carpenter doing work in our kitchen entered our home. Previous to that, Art sat at the kitchen table, head down, his countenance in a pained state, and his speech barely audible. When he was able to speak, he couldn’t find the right words to explain himself, causing him even more agitating anguish. He was clearly struggling. LBD was winning at that moment. Breakfast was barely touched, communication virtually nonexistent, and his movements were slow and shaky. As soon as the carpenter entered the home, Art perked up to unbelievable heights! He was full of banter, his once usual, familiar humor, sarcasm and wit in full swing! The transformation was startling! Had you seen him two minutes prior you would have been astonished, or more accurately, dumbfounded!! It is after times like these when Art feels like he is somehow seriously “faking it” with regards to his LBD. But what happens when the outsider has left and we are once again alone in the house? He literally crashes and can do little for the next several hours, or depending upon the amount of time it took him to engage in the “showtime,” it could be days of sheer exhaustion and sleeping for more hours than he is awake.
Why am I sharing this unsightly, unpleasant look at my husband’s illness? Because as life moves forward, this is our new reality. You may not see it, but it’s always there, in the background, unsettling as it is. I do try to be positive, but there are days when it gets to me. Seeing pictures or videos of his former vibrant self breaks my heart, because I know that man will never return. When going through some things yesterday I ran across our pictures of our very first London trip. Over five years ago, the walking difficulties were evidenced by the cane, but his face exuded nothing of things to come. He was excited, often like a kid in a candy store, sharing the sights, sounds, and awe of our trip with childlike abandon. The photos reminded me of a new friend made (Danny), and the amazing day we enjoyed being shown around the city by this amiable, considerate Londoner (brother of a Medway friend-who suggested we look his brother up-though we never met this London lad). And of course none of this would have happened if it weren’t for my husband’s unabashed boldness and sense of undaunted adventure, knocking on the door of an suspecting guy in a foreign city, who had no earthly idea who we were, taking the poor bloke completely by surprise! But in typical Art fashion, he and Danny were bantering in no time at all, trading quips and one liners, and indeed, a new friendship began that crazy day! That was classic Art! Never being afraid to chat up anyone, and always anticipating the best.
Memories are a funny thing for Art-he may not be able to tell you if he even ate breakfast, let alone what it was, but he could recall many details from our trip to London. What I am discovering these days are that new details are emerging from his LBD affected mind; memories from various trips seeping into others, assailing his reflections of vacations past, as they mingle together and create freshly altered remembrances. While this is not the end of the world, it is dolefully, just another phase of his illness that has invaded his reality.
But LBD is a roller coaster, and any symptom he experiences one day does not necessarily rear its ugly head on the next day. Or the next hour. Or the next minute. You just never know…for example, take dinner out the last night: Art had been hard at work most of the day sorting out “his” three drawers in the kitchen, a sightly disaster of years of collecting small items he couldn’t bring himself to toss out. Instead, he simply dumped everything he thought he should treasure into one of the three drawers. Now it was time to pay the piper, and clean them out and purge the easily forgotten (not because of LBD) possessions. He was totally spent by the end of the day, although much to his elated discovery was a $100 gift card, unbelievably set to expire in 2021! It was his idea to go to dinner (on this card), as we had been hard at work all day, also having taken care of two of our four grandkids that afternoon. So off we went to a favorite local eatery. I was wary taking him out, seemingly struggling to walk and make conversation by dinner time. But dining out is one of the things he truly enjoys, and after all the efforts of the day, I couldn’t deny him. So there we were, quietly sitting in the car as I pulled into the nearest handicapped parking spot to the restaurant. He slowly raised his head, hesitated a minute, and evenly declared, “I could even take my grandfather here.” With that pronouncement, I startlingly turn my head towards him, and meeting his sly gaze, I noticed some mirth in his expression. What on earth?? I am confused, wondering if LBD is advancing rapidly to take away his long-term memories too, as his grandfather is long dead-and then I get it. We are parked in a spot that says “Handicapped, van accessible”. He knows his grandfather is dead-the smirk and slyness in his expression is to make me think-his grandfather’s name was Van. I’ll just leave that there for you to think about. Needless to say, his wit was in tact. He was better than ok…he was Art.
So many of you have mentioned missing my blogposts lately, so I figured it was time to let you know how things are going here. We are plodding along, day to day, accepting all life has to throw at us as as best we can. So yes, I do get down at times. It is inevitable. As the holidays draw near, we are both excited to enjoy the day with many family and friends. We will have a houseful for Thanksgiving once again, and Art knows if he gets overwhelmed, he can simply go downstairs and paint, or take a nap. It is ok. But he wouldn’t miss this Thanksgiving for the world! Will he showtime? Probably, but it’s part of his LBD life and who he is now, and that’s ok. It is what it is, and if it makes him feel better…why not? He’ll bask in some much needed rest the next day. This Thanksgiving will no doubt prove to be a heralded walk down memory lane (whatever that will bring), as we share the day family and longtime friends from Thanksgivings past, as well as newer friends that we also hold dear to our hearts. For now, we are moving ahead, one day at a time, and pray that each new day will be a good one for all. Oh one more thing, remember that $100 gift card we planned to use for our lovely dinner date? It had already been redeemed!
Art in England, a little weary from a day of traveling.
Art and our new friend Danny, after our day touring London together.