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.

Just a thought for the moment...

giving up - letting go

I've been trying so hard to control everything that I end up controlling nothing.  I've been on the proverbial hamster wheel and I'm always amazed when I end up in the exact same place I started.

So much of this illness leaves us in limbo.  I suppose it's that way for every illness.  It's a hard way to live. When do his legs go?  When does he stop swallowing, talking?   How do we prepare for that?   When do we move?

What I've decided is to just stop.  Stop thinking, stop worrying, stop micro managing.  It doesn't mean I can't make wise choices or continue planning.  But I can only plan for what I know.  What I see happening. I'm going to leave the rest up to Luther and to the Vets Hospital.

I actually felt this huge sense of relief roll off me.  I was at lunch today, thinking about this, sitting in a booth by myself and I started crying.  It felt good to cry, to release this tension of the unknown.

I keep going back to the idea that each day should be a good one.  A happy one.  Not worrying about the what if, the sadness or scariness.  We're so fortunate to have the support of friends and family and of the Vets.

I have the weekend off and am looking forward to hanging out with my guy.

a letter from Claremae

Some of you might remember the woman I met at work - the older lady who dropped her magnifying glass? She had asked permission to pray for Luther at her church.

She tracked me down to the Roseville store; she wanted to write Luther a note.  We received it yesterday.

It is on a card and it is typed, like on an old-fashioned typewriter.  It is lovely.

She ends the note:

My prayer for you today is that man can treat an illness but it is God who heals.  I ask him to give you strength for the day.  Accept the fact that God does love you and accept His peace.  Many blessings, Claremae

I know there are many people out there praying for us:  family, friends, online friends and even people I don't know, like Claremae.

Both Luther and I appreciate the fact you read this journal, that you send messages on Facebook, that you reach out to us in person -- it feels really good.

sad little firsts....

I brushed his teeth


He wanted a scooter from the moment we walked in to Target

No steps forward - two steps back?

Luther's feeding tube is intended to give him extra calories.  Unfortunately, since it's been put in, that hasn't been the case.

First off, I am not a gentle nurse.  I'm learning to be one.  

So think of this tube coming directly out of his stomach.  What goes in also comes out...  

The end of the tube is like the end of an inner tube or floaty thing you blow up and put in the water.  You snap the end back in to the tube to make sure nothing comes back out.  

My mom is really really good at tiny, fine detail work whether it's knitting, sewing, darning.  That talent skipped this generation.  So I'm trying to bend the tube so the gooey watery stuff doesn't come out, I'm trying to snap open the top without pulling it too hard then put in the syringe with my big 'ole man hands. (Don't get me wrong, I like my hands just fine)

The first time I did this, I pulled on the tube and sent Luther through the roof.  :(    

The first night we fed him - two nights ago, he became super bloated.  Ok, I'm just going to get down to it here and say it:  he couldn't fart or burp enough to make himself feel better.  He didn't want to eat at all because he felt full but he wasn't full.  The only thing he'd eaten was this milk stuff.

We figured out some stuff.  I'll spare the gory details (laxatives) and he got through the night.  However, we did it again the next day - fed him more gooey milk stuff and the same thing -- feeling full, bloated -- so he doesn't want to eat real food.  

I bet today, he's had maybe 1200 calories.  While he was in the hospital, he had to fast for the surgery.  He hasn't eaten much of anything in the last four days.  

My skinny patient.

Feeding tube - Friday night

Luther's home.  He's downstairs eating a Big Mac.  That about sums it up!

The surgery went well.  His stomach really hurts but that's expected since he has a hole in it now with a six inch rubber tube coming out of it.

He'll be fed 3 cans of a chocolate milk-like substance.  You could drink it if you were starving in the desert. Since he's not starving in the desert and still able to eat Big Macs, this stuff is simply additional calories.  750 a day, I think.

The bag is like one of those saline hospital bags you see hanging from an IV pole.  I'll pour all 3 in one bag and let it drip in to his six inch rubber tube for about 2 hours.

I have this giant syringe I could put in to the tube which is quicker.  He's not ready for quicker quite yet. Slow steady drip of milkshakey gunk for now.