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.
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