Monday morning started out fairly typically. We had our cereal for breakfast, Karen did a few things around the house, I stayed out of the way as much as possible. And, I was decently lucid and communicative. The only blip in our otherwise normal routine was that I had an appointment later that morning with my neurologist, no big deal really. Except today it would become a big deal.
As I said, Monday morning started with my being lucid and actually very talkative now that I think about it. But the later in the morning it became, the more the fog rolled into my brain and I began to withdraw within myself. By the time we arrived at the neurologist’s office, Karen was having to hold onto me as I was stumbling so badly, and lead me into the office. I was only responding to direct questions and most often with simple, one or two word responses. There was no initiation of communication on my part at all. And you know what, this was fortunate. For if I was to see my neurologist, she might as well see how bad it can become. Almost any other appointment we would have canceled.
Now here’s the part where I need help. Naturally, with all this going on that morning, this was a tense appointment for Karen. Not because of the neurologist, she’s very comforting and professional, because of the knowledge the she was providing. Of particular interest was an exchange that came toward the end of the appointment. Karen asked her what stage she thought I might be in. After some stammering about there not truly being stages in LBD she finally told Karen, that based upon what she was seeing at that point in time, she would say I was in the severe stage. As I was visiting another world at the time this news had little effect upon me. However, it hit Karen as though a piano had fallen on her from 20 floors overhead.
Not hat she would let me see the devastation, but eventually, as I came out of the fog, I could tell something was wrong. With a little probing, I soon found the weeds in the bean patch and we were discussing what the neurologist had told us. I, quite predictably, had no memory of appointment at all whereas the word, “SEVERE” kept dancing through Karen’s conscious. And it was beginning to bore into her soul. Severe, was a word she had been dreading hearing, especially so soon after diagnosis, but there it was, staring her in the face, taunting her with its finality. She was, and is, in pain.
I hate seeing her like this. Normally, her frustrations and fears lie just below the surface. But not that day. On that day, it was plain to see she was hurting. And I had no words or actions that could/would help. All I could muster was to provide some “palliative” care, so to speak. I sat with her and talked about her fears and anxiety concerning the progression of the LBD, the word “severe”, and several other things that were floating around in her noggin. I can’t say our discussion was a game changer but it did seem to life the darkness surrounding her just a wee bit. But her frustration, her sadness, her sense of loss were still strong.
This is what I knew was coming. Having her start to grieve my loss, even tough I was sitting beside her. And worse still, she would have at least one or more grieving periods to go through before ‘this is all over. It’s just one of the many perks of being a caregiver for someone with dementia.For now, the worry and dread is back below the surface, but I’m pretty sure I can see it’s ghostly form roaming around in her brain, constantly eating at her very soul. I want so badly to ease her pain, to be her knight on a stallion, but it is not to be. I just simply don’t have the appropriate words within me to comfort her any longer. It’s not that I don’t want to, they are simply not there any longer. And if I do find them in the dark recesses of my mind, I lose them before I can expose them to the light of day.
So, to put it mildly, I don’t know how to help. She needs and deserves the comfort and reassurance that only a spouse/SO can provide. But she is being cheated out of this companionship and help. And it’s not right, though I don’t know what is right in this world anymore. She deserves so much more. She is kind, warm, intelligent, outgoing, and would give you the last thing she owned if she thought you were in need. I’m extremely lucky she has put up with my foolishness for all these years. Nearly half a century when I think about it. She is my life, what makes me continue to move forward each day. And I don’t know how to help her.
Enjoy each and every precious moment with those you love...
Randy
New to this and begging for help and advise.
Help dealing with anger
Difficulties of caring for dementia.