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!
Thursday, December 29, 2016
Sunday, December 18, 2016
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.
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.
Sunday, December 11, 2016
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?
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?
Friday, December 2, 2016
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.
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"
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