Tuesday, May 13, 2014

We're in different places...

In my eyes, Luther is still good.  Wait.  I should rephrase that because he's always good!

When it comes to how he's doing, I think we're in different places.  It's little things that give him away.

He doesn't like to worry me.... which worries me.  I hate HATE finding out later what he's been thinking and this happens all the time.  I have to pry things out of him.  I do think this is sort of a guy thing.  Not telling us every single emotion or thought in his head.  Fine.  He gets a pass on some of it.  Now, though, it seems imperative I know and understand what's in his head.

So I think he's good.  He's still talking.  Eating.  I know I've mentioned how ALS works before.  It either starts in your limbs or in your throat (which is called bulbar ALS).

The limb stuff is bad but it doesn't kill you.  It's awful and inconvenient and it sucks.  When it becomes bulbar and you can't talk or swallow or eventually breathe, that's when the dying part starts.

But these little things.  I start hearing or seeing these little things and I don't know where we are.  Where he stands. Or sits, so to speak since he doesn't stand much anymore.

Here's my evidence:

His excitement about getting his power wheelchair is overwhelming.  For me, it's unnerving.  He still gets up, stands.  I worry once he gets in that chair, he'll never get out.  Ever.  Ever. :(   This scares me beyond words. I think, though, it's what he wants.  I hear relief in his voice when he talks about getting it.  I wonder if the power wheelchair is his idea of freedom??  He can't do much, he can't go far now.  In his mind, will the wheelchair give him that ability??

He doesn't eat much.  If he continues to lose weight, he'll die faster.  I can't put myself in his place - I know he's not hungry.  He had the dietitian tell me (this supports my thesis that he won't tell me stuff) - he had the dietitian tell me he would no longer eat with utensils because it was too hard.  Consumed too much energy. So it's finger foods or I feed him.

At the last "clinic" in April, the speech therapist said the bulbar part has started.  Just a little, but it's started.

He coughs and chokes all the time.  Not just when he eats anymore but at random times.  We had a baseline swallowing/eating test the last time he was in the hospital getting his feeding tube.   The doctor called and said they wanted to set up a second one June 9.  Just a month later.  Not the usual three month span between visits and tests.

I'm not even sure what to say.  How to end this post.  I feel all naggy when I try to talk to him.  He sits, silently, unsure what to say when I ask him stuff.   I've started avoiding.  I called it giving up, "letting go" a few days ago.  Now I feel avoiding.

Anyways.  Enough writing for tonight.


  1. I'm glad you have this place to vocalize your fears and concerns, because yes, I think it's a "guy thing" and it will probably be difficult to get him to really open up to you (and might cause a lot of stress for him if you push him to do so - on the other hand, if he COULD find his way to being open, maybe that would release the stress of having to keep up a "front" for you).

    1. Hi Liz. It is good to be able to express some ideas here. I know he reads this and sometimes it spurs a good conversation. I try to be gentle with him but sometimes find my self nagging because of the urgency I feel. I know nagging never ever helps. Two steps forward, one back... thanks for the message!!

  2. He needs to do it - handling his decline in his own way and I imagine that way will change over time. Meanwhile, just keep doing what you are doing which is being fabulous and loving and supportive. You can't worry about what Luther is or is not ready/willing to tell you, that is too much for you take on I think. Life on lifes terms, Luther on Luther's terms maybe? :)

    1. Thanks Lenore. I've appreciated your support here, it's been great. I do try most often to understand that every single thing I bitch about here is my stuff... I've always said Luther is a pretty cool cat and I think at times, he's happy to have led a really really good life. We can't change this, we can only love each other more. So -- while I'm running around like a crazy chicken, he waits for me to calm down and then we end up talking like sane people. We're a good match :)