Living In An Evolving Now

I am 33 years sober this month. Sobriety is always now. It is always just this minute, just this hour, just for today. 33 years in sobriety simply means I have heard the message of sobriety and practiced staying sober longer than someone with one day. Our common ground is the fact that we are both sober now. Our common ground is that there is no other way to stay sober. Be sober now. 
An evolving now defines the margins of the life my husband and I are leading. Understanding and adapting through our growing knowledge of what having frontal lobe dementia means is an evolving now. Coping with mood swings, tiny changes in routine, misunderstandings that feel personal but are not personal, the monotony of care giving, the pursuit of common ground through chat rooms are all part of the evolving now. He and I live in it. We rarely discuss it or even refer to it. We live in it. 
 Frontal Lobe Dementia is a multi-faceted form of dementia that is nothing like Alzheimer's. Frontal Lobe Dementia is in the now. It may have been in our "now" for a long, long time. It may have posed as deep depression, lack of empathy, diminished social skills, fixed  thinking, obsessions and stilted conversations. If I look with clarity back down our road to here I can see the signs. I can see the footprints of this illness in behaviors I did not understand. Doctor's visits, hospitalizations, treatments, shock treatments, medication changes with little real change in my husband's symptoms all point to more than any of us could see. Should we have noticed? Should someone have pointed at a moment in this journey and said, "This isn't working. Something else must be happening?" Caught in the moment. Caught in the now of each event, each sense of loss, each dawning realization that the result we sought was not to be found blinded us. He was blinded by the changes in him. I was blinded by the needs I had that he could not meet. I thought I heard he "would not" meet and cried so many tears that he did not care for me and now, right in this moment, I believe the truth was and is that he "could not" care for me. This illness had begun the work of taking from us long before we noticed anything missing.
Interesting how ego struts into a relationship claiming space to express itself. My ego bore the wings of a proud peacock. It needed to be admired. My ego needed to take him prisoner and force him to meet my needs. My ego, despite the outer strutting, needed to be built up, supported by another's words and adoration. My ego blinded me. It was not my fault. It was not his fault. We only played the hand given to us as if we were wounded and angry at each other for our wounds. Now I know the illness of the frontal lobe dementia had, most likely, stolen a small portion of his brain. Just a tiny bit. Enough to cloud his mind. Enough to create an itch he could not scratch. Enough for me to notice lack and rage against it.
I am 65 years old. He is 70. We have been together 20 years. Out of all the moments we have had together the diagnosis of frontal lobe dementia, the reality of this illness in our lives and our response to it has brought us closer. Until it was defined it drove us apart. 
He grieved the loss of his ability to be independent. He grieved the loss of long days spent fishing at the pier and hunting the down east waters for bait. He grieved the loss of his car. He grieved his dependence on me. And then, one day, that grief seemed to fade away. 
I grieved the familiarity of our routine. I grieved looking after my mom and increasingly looking after him. I grieved the loss of expression, the loss of attachment, the loss of my independence and the fear of an illness I could now see happening to my husband but could not define. 
Today we live in an evolving now. We do not think about the future and we do not talk about it. I tell him we are in this together and we will be in it together. I tell him not to be afraid. I tell him he is loved. I know that he loves me. At times I am afraid and I let it go. What is to fear in the evolving now? Right here. Right now. This moment in time we are responding to, operating in and depending on, this moment and nothing more. It works for us. 
The truth is that no one has more than we have when we are living in the moment. All of us are living in the moment. The sum total of what brought us to this moment and what we will do with the rest of our lives resides in this moment. I am grateful for the "now". I can manage right now and I can think right now and I can find my way right now and my husband can depend on me right now and trust the process right now. God is with us right now. Within this moment and in each moment, within the evolving now we are loved, cared for, protected and blessed by God. The evolving now is eternal. God said, "Do not be afraid." We are not afraid.
I see myself moving through the many days and nights it took to get to this moment. I began the journey filled with a deep sickness of spirit. I am needy and, like a lost dog, wandering from place to place seeking comfort from whomever provides that comfort. I begin to change. The sickness begins to heal. The wounds and bruises heal. For a long time I cannot bear the grace that lifts me up and loves me unconditionally. I hide from it as I imagine Adam and Eve hid in the garden. The love continues and does not let me go. Days and nights and years pass. Love forgives me. Love teaches me to forgive. Love brings people and situations into my life to heal me in the here and now. The day comes when Love decides to teach me how to love unconditionally. Through an unwise choice I make Love seizes the opportunity to teach me. I am ungrateful and demanding. I forget the Love that lifted me and crave the filth I wore when Love found me. Love does not let me go. I surrender. I surrender. I surrender. Love guides me to love freely as I have been loved and suddenly in a burst of joyous awareness I understand. My husband and I are bound together in this pouring out of grace. The lines are blurred between us. In a way that only Love can know we have become one together. Here and now.

Island Life

Alarmingly little is passing through my head of late. Inspiration is running at a trickle. The old stand-by of righteous indignation coupled with an ill defined anger requires energy and a cause. I am fresh out of a cause and running low on energy. Opinions are on a hiatus. 
 I dreamed, again, that I was in a foreign country. It seems the arrangement was temporary. I felt a deep desire to stay. I knew I had to go. I befriended a family. They had small children and were adventurous. In the dream I was exploring a part of an island with one of the people I met. I knew, intuitively, we were not suppose to wander so far nor were we to follow the road we chose. The girl I was with assured me that all would be o.k. We went through an awful mud bog and as the path rose and curved to the left I heard then saw a group of men descending the path towards us. They were dark, short, stout and muscular men. They were talking loudly to each other. My companion said we should be quiet and let them pass and for a minute it seemed this would work. Not far past us one of the men turned and looked back. He growled rather than shouted something in a language I did not know and all of the men gave chase after us. There seemed no hope of rescue. I remember the fear I felt as we ran ahead of them. We took a sharp left down a path that, if memory serves me right, led to a large body of water and, as is the way of dreams, we were suddenly in the water. It was a beautiful day. The family I met on this island moved toward us on a boat waving cheerfully while asking how we came to be so close by while exclaiming how fortunate it was to find us. It was not that we were rescued as they did not have a clue about our scare. It was a disarming response in the total lack of surprise at finding us in the water with no boat of our own. The response felt oddly familiar and yet it reminded me of a song being played with all the right notes except for the ones just played and no one noticing at all. The dream progressed with a number of sequences and the inevitability of my departure weighing on my mind. I wanted to stay and I wanted to go. The entire dream had a discordant note. That aspect of it resonated with me. I don't remember anymore of the dream. I know I planned to leave. I felt torn but also felt uncomfortable about staying. The people I met and the experiences I had with them were intense yet shallow. The idea of staying was becoming more for them than for myself. I began to feel that I was pretending to want to stay and I woke up.

This is the second or third dream I have had of traveling to a place unfamiliar to me, meeting people and wanting to stay but finding myself torn between returning and staying and, at the end, thinking how I was pretending to want to stay as if I should want what was offered in the places where I found myself and as if I should believe something I could not fully believe nor could I fully let go. All dreams ended at that point.

I woke up feeling as if I left in the middle of a play and did not know why. The other feeling is that I was returning somewhere that held nothing for me. I was puzzled and conflicted.

Left to wonder...

Happy Harry the hippy man made a hasty decision to extend his stay at the Hula Hotel for the Faint of Heart. He felt the fear of old age and the ache of his bones as he moved across the worn carpet of the cheapest room he could get at the Hula Hotel. His hair hung damp and limp from the humidity of a mid-day heat. He drew a  secret smug delight in leaving his hair long and often pulled back into a ponytail. Happy Harry the hippy man yearned for hair thick enough to braid and wondered why someone such as himself was destined to thinning hair as he grew older. This explained, though he might not relate it to his thinning hair, the tongue stud and a tattoo of a praying mantis dressed in a zoot suit with a top hat perched at a tilt on his head and a saxophone swung around his neck. As if that were not enough the front of the body of the praying mantis faced one way while his head, turned one hundred and eighty degrees in the opposite direction, setting the stage for his diabolical grin. Small notes of music floated up from the saxophone. The tattoo was exquisite in detail. The praying mantis had a deep, rich green body He wore an outrageously purple satin zoot suit over a rich buttery, sunset yellow silk shirt, a blood red top hat and black, custom-made leather shoes sporting spats and a high gleam shine. The golden color of his saxophone appeared to catch an unseen light source producing the unsettling illusion of movement. The music notes floating up from the saxophone were sharply defined and etched in black. The entire ensemble set the stage for the crowning victory of the face of the praying mantis. Sat precariously at the top of his fragile body and turned in the opposite direction of the front of his body the artist had chosen to first draw and then color in the maestro's eyes in the deepest emerald green. Half closed by an exaggerated fold of the eyelid a glint sparkled from one eye The artist captured the glint as an exquisite minuscule diamond.The praying mantis had thin lips drawn back in a smile so perverse that friends of Happy Harry were shocked and confused. What possessed a man like Happy Harry the Hippy Man, they conjectured over dinner and a few drinks, to wander so far afield in his choice of tattoos. Inevitably, one of them would remind the others that Happy Harry had always drifted a tad left of the center line. Everyone would nod and take a sip of their drinks.

Happy Harry believed himself to be the last of a dying breed. He carried himself with an air of barely concealed disdain, except in the presence of the occasional hedonists to cross his path. His ego forgot his superiority in the presence of people he believed crossed the lines of decency without a hint of guilt. Though such characters rarely crossed his path Happy Harry was incapable of responding in anything other than an embarrassing and most unattractive form of hero worship. This trait also puzzled anyone who knew Happy Harry on a daily basis. The old, hip, slightly haughty man they knew disappeared into a fawning, sniveling pawn in the hands of these strangers. He catered to their every whim until the day they left. Afterwards Happy Harry confined himself to his room until he could emerge with what he believed was an air of mystery and secrets. The kindness of his friends saved him from well deserved snickers and snide comments. He was a most frustrating man and yet engaging in the way that oddity often presents itself. In truth no one who knew him would have him any other way. So they shared drinks with him until the mystique wore off, the haughty swagger returned and, some would swear, the praying mantis winked an intensely wicked wink.

Genetically Screwed or Who is Going To Clean This House

Random thoughts! Random thoughts! Oh my goodness! The Department of Social Services is coming to our house tomorrow. No! Not all of them! Two of them! A social worker and a nurse! The person who generally runs the show in my head is having a panic attack. Pacing back and forth inside the cerebellum from lobe to lobe searching for someone, anyone, resembling an adult who likes to clean-up. Likes?! O,K. that is asking more than possible. Put out the SOS. "People in my brain! Would one of you kindly step up to the plate and organize this entire freaking residence in the next five to eight hours?" Counterproductive! That was counterproductive. Everyone left out the back entrance. 

(Let me be clear for a moment.) Ahem! I know there is only one of me. See? But I cannot deny that the words Department of Social Services and coming to my house provide fertile ground for a meltdown of my mental health. I'm sure one or two of whomever reads this post will understand. 

Oh dear! I just brought my own self down. I am my own "debbie downer". Unthinkable! There is only one of me but what a "me" she proves to be when there are things to be done of the organizational variety. Deep breath! Tomorrow is a good day. People are coming to help my husband and I have a better quality of life as he progresses in his dementia. That is a wonderful thing. A blessing! (I need to take a moment! One of the other me's who is not really anyone but me is tapping me on the shoulder.) 

The freaking Department of Social Services is coming to my house tomorrow and they are actually going to come in my house. I feel faint at the thought. Who shall I say is responsible for all this stuff? Should I blame an errant house guest who's just left me with this mess to be cleaned up? 

(several days later and the drama queen or dare I say it the Queen of Histrionics reports from the field)

Dear viewers, there was a small misunderstanding. The resident in charge went into a full blown freak attack in anticipation of the Department of Social Services coming to the house. The meltdown drove a dusk to dawn night of frenzied and non-productive cleaning that was without merit.

 When the Department of Social Services came to the house they were not the Department of Social Services. They were affiliated with the Department of Social Services. They asked questions, filled out paperwork,  left and came back with more paperwork. A nurse arrived and took baseline vital signs and she left. Not a single one of these professionals so much as used the bathroom while in residence.

 I, the madame of the afflicted cerebellum lost my cool for nothing. No reason. Not one moment of the meltdown made an iota of a difference.  No drama. Paperwork completed. Phone calls made. Approval obtained.

 Approval in hand, "I,Me Us"leave the room with a sheepish grin and a heavy sigh of relief! 

It is late or It is early!

The past few days have been somber days. Just thinking; maybe the past two weeks have been somber. I am not a Christmas lover. I get a warm, fuzzy feeling about two days before Christmas and am happy with that for myself.

The past couple of days with my husband have been difficult. Not because of what is happening but because of what is not happening. Frontal Lobe Dementia is a particularly cruel form of dementia for the patient. It is not like Alzheimer's which is horrific for anyone experiencing it. Frontal Lobe Dementia does not take the memory as thoroughly as Alzheimer's. This means the person with FLD realizes, on their good days, what is happening mentally and physically. Being home with my husband and seeing the depression, frustration and resignation play out is incredibly difficult. Anyone who has dealt with dementia in their family, and there are many, know the heart wrenching sense of loss that happens far ahead of an actual loss. The daily care giving is nothing when compared to the acceptance that has to happen in both of us. We don't talk about it often. Usually, conversations start because I try too hard to find ways to make things better and he reminds me there is nothing I can do to make things better. He has Frontal Lobe Dementia, and it is incurable. 

He has probably had symptoms far longer than I originally believed. After researching on the internet and sharing with support groups on the internet I can see the beginnings of symptoms probably three years before he began to feel physical symptoms. I now wonder if many of the visits to the hospital for depression and confused thinking were really this slow, degradation of his frontal lobe. There is no one to be angry with because early symptoms resemble a number of mental illnesses or emotional disturbances. I cannot imagine who would have thought to do an MRI or test in other ways for this dementia. Maybe they would not have been able to identify it that early anyway. 

Part of me is reeling inside. Part of me is calm and performing the tasks required each day. We spend a great deal of time together now. In that respect we have grown closer and care more for one another than at any other time in our marriage. But it is not a romance as much as it is a reaching out towards each other in our own way to blend our efforts to walk this awful illness out together. It is not pretty. We could not possibly find a musical score that would be appropriate. I get frustrated with washing sheets and helping him get up and down and watching what he wants to watch on t.v. He gets frustrated with my adhd self and my need to help what cannot be helped and not being able to be away from me and on his own. He was a fiercely independent man. He fished hours and hours at the pier. Now he is home or at the doctor's office and he cannot walk far without help or remember how to use the remotes or remember where I went or when I will be back except for the days when he can remember those things part of the day and not on the other part of the day.

The day we let someone buy his car was awful. It had been sitting in our driveway for over four years as a hope and symbol of possibilities that we both knew would not come. The day it left the driveway he withdrew for two days and almost cried. I hurt so much that I wanted to run off after the man who bought it and ask him to bring it back. I think we all want to believe that we can reverse the irreversible by the sheer force of our wills. Sorrow drapes itself over my shoulders on days when I have magical thinking. Magical thinking is wicked. It cuts like a knife.

This is just me thinking and is in no way a power of example or an effort to convey wisdom on any level. I count on God to be wise and to guide us through the fierce, dark forests and the days and days in the desert. I believe God redeems the time for us. At some point between here and there I will be redeemed and so will Robert. There is a better than good chance that we won't know it when it happens. Redemption is a quiet, precious gift We will notice that the entire trip seemed to take only five minutes and you can flat believe that will get our attention.

A World Full Of Dangers

A World Full of Dangers

My cats surge around me as I walk.  I turn to step towards the refrigerator. Oops! YEOW! Move your dadgum tail you piece of feline destruction. It was you or me!

Glorified Plastic Shoes, known as Crocs, conspire to send me into a head first vault down the damp wooden ramp at the front of the trailer. Who knew the smooth sole of a Croc would need little encouragement to skid me into a short but fierce burst of life and death defying contortions in a frantic effort to maintain my upright position. 

Crocs again...when they catch on a tiled floor in a store and they stop with my feet in them but I don't stop because who knew it was going to be that particular step? Refer to slipping on the porch for a description of contortions, upright position, etc.

 Tiny food items that manage to go down my windpipe when I swallow while laughing or inhaling from a laugh. They cling tight to my lungs with the tenacity of tiny little crabs. I cough and cough, drink water, cough some more, clear my throat. ACK! ACK! Sorry! Sorry! What? No I'll live. Thank you! 

That sorry excuse for a tub they put in mobile homes. Step up and into the tub. Warning! Warning! The "classy" plastic tub, wet with water and soap, morphs into the equivalent of a snow covered, icy advanced ski slope  Each encounter is fraught with peril. In addition, the recessed step is rounded at the edge and at least two inches short of allowing feet to stay put on it. I avoid the step in favor of a large step from the bath mat, over the step, over the side of the tub and onto the mat inside the tub. There are hazards in that approach but none so blatantly designed to bring on death as the dreaded tub step. 

Last, and far from least, grabbing up a cat who is outdoors and looks kinda like my cat and holding it by the skin behind its neck and tight against my chest while it makes inhuman noises as I tell it who the boss is while my husband stands at the door saying repeatedly, "That is not our cat!" only I don't hear him because I am yelling for him to "OPEN THE DOOR FOR THE LOVE OF ALL THAT IS GOOD IN THIS &^%$ WORLD". When I get to the door, he repeats himself as he opens the door. My cats go native and lunge towards me just as I realize my husband was yelling, "That's not our cat!" I let go! Stray cat flies away, home cats stand down and husband says I'm crazy and I'm like, "You say that like it's a bad thing!"

Who knew?

Security Wherefore Art Thou

IF I HAD AVOIDED DANGER I WOULD NEVER HAVE BECOME WHO I AM TODAY NOR LOVED THE WAY I DO TODAY. 
LOVE IS DANGEROUS, DARING AND ADVENTUROUS OR IT ISN'T LOVE AT ALL.

I CHOOSE TO LOVE "LIKE A FREE SPIRIT IN THE FACE OF FATE"