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"

I Want

I want to be a poet or a laureate or a poet laureate.
I want to be an acclaimed singer posing as a man like I saw Lily Tomlin do one time long ago.
I want to make a difference in the lives of those who have no others to make a difference in their lives. 
I want to lose weight and be tall and thin with my hair long and braided down my back.
I want to own property and rescue dogs and hire people who were rescued to love the dogs back to health while the dogs love them back to health.
I want to teach Miss Nibbles, the parrot who loves me, to say "I love you".
I want to take a boat ride far enough out to sea at night that I cannot see the lights of land and blackness crowds round until the stars fill the sky above and the flecks of surf flowing along the top of the water catch the reflection of the stars and twinkle.
I want to draw a deep breath full of the smell of heather and grasses and fresh turned earth. I want the rain to fall afterwards as I stand with my face turned up to catch the drops.
I want to love a child who has forgotten how to be loved.
I want to die tonight and I want to live forever and I want to laugh and hurt and find myself falling onto the ground and rolling over and over in the throes of an ecstasy both frightening and glorious all at once. 
I want to plead with the wounded souls who bring terror into the darkness of the night to put down their weapons and to stand still for moments and moments until they feel themselves breathing and they know the wonder of that breath and the joy of that breath so that they would never choose to take it from another soul.
I want to serve and love and serve and love in the service of Christ the Lord until there is nothing left of me but the bondage of my surrender in His service and all that I can do is cry out with joy, cry out with this fearsome peace that passes all understanding and cry out with this love that will not let me go.
I want to show someone who has never dreamed it possible that they are loved by the creator of the universe, by the alpha and omega and they are loved by the creator with such a jealous love that they cannot escape that love nor wish to be in the presence of another god forever and ever.
I want to sit perfectly still. Close my eyes. Be silent and listen to the sounds of my home. The sound of warm air flowing into my room from the heater down the hall. The sounds of my cats breathing deeply in their sleep. The sound of the clock ticking. And finally, the sound of myself drawing in the breath of life right here in my home among all the things I love. I, yes, even I can draw in the breath of life.
I want to stop now. I am finished.

What A Way To Say I Honor You!

Today

Today I took my husband to the doctor. Today I went to the grocery store. Today I went to the pharmacy. Today I learned of illness and misfortune in the lives of a fair sampling of the people I know and trust. Today my dear friend knows her brother in Washington state is dying. Today my friend's brother may well die. Today I formed an opinion about life and forgot that opinion along with a number of other excursions down the rabbit hole. Today I made an effort to refrain from analyzing myself. Today I judged a number of people. Today I wanted to get high. Today I turned to another radio channel to wipe away the thought of "I want to get high." Today I experienced vulnerability. Today I sought and I found, I called out and I received an answer. Today I made the daily commitment to follow Christ. Today I read scripture. Today I made the daily commitment to stay sober. Today I made a conscious decision to love my husband unconditionally. Today I chose to let God love me unconditionally. Today I chose not to fear. Today I stood at the edge of the gaping maw of the abyss. Today I walked away from the abyss. Today I sang beautifully for several seconds in a row. 

Today I chose to live in such a manner that I could be reasonably sure to wake up at peace tomorrow.

Totally Relate!