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.
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