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I don’t know how to help

Poppygail profile image
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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

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jeffcobb profile image
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This is Beth. Thanks for sharing. Sadly, no one can truly help her. She is going through this process and even though it is hard for everyone, she will get through it because she loves you and wants to show that love in her own way. There will more moments like this but I know for myself, I falter, I cry, I get frustrated and wonder if I will get through this. And then I look and Jeff and yourself and realize that I have to live up to the bar you two have set for yourselves. That even after you are gone, I will always be a caregiver fighting for you two in hope of one day stopping this terrible disease from devastating so many people. We love you both. We need to do hangouts soon.

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jeffcobbAmbassador in reply to jeffcobb

Sorry for all the typos.

kkminton profile image
kkminton

❤️This is the joy and pain of true love

Bless you both forever.

jeffcobb profile image
jeffcobbAmbassador

Hey Randy; that is one of the paradoxes of LBD or maybe just dementia in general I hate: As you noted you can usually only pick up on things when you are in an up state which means you can read the room and people better than normal,as-in I have noticed since this set in under normal conditions I can't read people or situations for crap. So the time when I really need this skill, to not only see the visual clue but be able to comprehend them as well, in in near-real time, well its gone the most then. Sometimes it really spooks me when I find I *can't* read a person or situation, feels like being forced to cross a frozen lake in mid-spring....

I don't think this needed a label for folks to know Beth didn't write it...

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