Thursday, August 25, 2016

Everything changes in an instant

Not even sure where to start. This used to be a safe place to vent, to get the chaos out of my head.  It doesn't feel this way anymore.

Everything feels too hard.  I couldn't make a peanut butter sandwich earlier today.  The knife felt too heavy in my hand, the countertop was so sticky from something else, some sugar packets had fallen on the floor and that distracted me.  I couldn't cut the crusts off - it was too confusing in that moment.

But it wasn't the sandwich.  It was Luther.  The weight of what's been happening manifested itself in a stupid peanut butter sandwich.  I got over it in a couple minutes and fed Luther.

With ALS, you live life fairly normally and then BAM!  Something happens.  Like 8 months ago totally losing his hands.  Even though it really was gradual, it was just one day on the drive down to Florida, he looked at me and said, this is it.  My hands don't work.  We adjusted and then we lived our "new normal."

Well - something happened.  A bunch of somethings.  Big somethings.

1.  Total loss of legs

Prior to this, Luther's been able to stand.  Not for long but it made peeing and changing clothes easier. He could also do things like kick open a door, use his feet to tap a button.

One day, he just couldn't stand up anymore.  Now what?  It was a scary, freaky moment.  Now what the heck?  I was superwoman with the hoyer lift. And now we use the hoyer lift for everything.

Yup - this is a hoyer lift.  (It's not Luther)  It's become another piece of furniture.  Poor Luther. Long, skinny legs dangling from the sling.

He'll be all crunched up, dangling, butt sticking out of the bottom.  The first time I used it went fairly slick, although I did whack him in to a wall.

2.  Loss of core strength

This is a big one.  You know how weird Steven Hawking looks in his wheelchair?  That's a thing. ALS people lose their muscles.  Stomach and neck muscles, too.  This has happened to Luther.

Last week, he could lean over to get a drink of water.  He could move himself forward to itch his nose on a piece of equipment.  It made him feel independent.  It seems that in an instant, he lost this function.  He can't move anymore.

As much as I've been with him these past 2 years, I haven't been at his total beck and call. I've been able to leave for an hour.  I've been able to be in another room or outside.  Now, in the last 3 days, it's overwhelming.  For us both.

3.  Diaghragm strength worse / Breathing worse.  

With ALS, you lose the ability to swallow and cough.  Which then leads to not eating, not talking and eventually, not breathing.  This really hasn't been an issue, for which we've been grateful.  The fact we still talk, we eat together is a blessing.

Now, what seems in an instant, I have to put my hands, palms flat on his lower stomach and shove hard up as he coughs so he can breathe.  His cough is weak and sad.  We do this several time a day for several minutes a time.  Eventually he clears his throat and he feels like he can breathe.  After each time, he's wiped out.

Think of it like when you have a cold and that gross junk/snot gets stuck in your throat. That now happens constantly.  He can't get the junk up.  He can't swallow it, he can't cough it up.  It affects his breathing.

So the not being able to breathe is clearly the scariest.  At the VA clinic in early August, his breathing was at 50% - basically his lung capacity is at 50%.  He's been reluctant to use his bi-pap.  Said he doesn't need it.  That's partially true.  I haven't heard him having too much trouble with breathing... it's been a once in a while thing. Sometimes eating too fast would make him struggle for deep breaths.   Or if he got anxious about something.

In this past 3 days, suddenly, he just can't breathe.  At least once a day, he's gasping for air. We've set up the bi-pap but he can't use it.  He's so claustrophobic he has a panic attack with the mask.  This would've been a great reason to try using it months ago - just to know what the feeling of having on the mask felt like.  So here we are, I watch him, like a fish out of water, gasping for air and the mask freaks him out worse than getting air.

4.  Hyper anxious

Everything, everything is bugging Luther.  I know it's just anxiety and fear.  Once we settle in to these changes, as we have with every change in the past, Luther will settle down as well. I hope...

I try to put myself in his place.  How scary is it that he can't move anymore?  That his breathing randomly gets so shallow he's gasping for air?  That his dependence on me has increased dramatically in just a few days?

And yet, this hyper sensitivity to things like his eyebrows are touching his skin, there's a wrinkle in his shirt that's bothering him, his toenails feel weird... it's ALL weird.  In one hour I think I was up out of my seat 10 times adjusting his legs, brushing his hair, wiping his nose.

Earlier in the evening, he was outside smoking.  (yup, I know... no comments, please...)  All of a sudden he was bellowing, panicked.  He was frozen.  I got him calmed down but he was in tears. Scared.  I pulled him forward, rubbed his back.  Told him it's ok.  Just let him cry.  I couldn't cry.  Just held him until he stopped.

I got him inside but it was another hour of adjusting.  Fingers felt curled.  Shirt felt in "disarray" was his word.  Pant seams were out of whack.  They weren't but I pretended to adjust.  Was there a bug on his neck?  No.  But I scratched his neck as if there were.

We ended the night with me getting the wheelchair tools out because the chair didn't feel quite right. Nothing's changed.  Nothing.  But he knows it has.  So I take the attitude it has.  I'm not in the chair. At midnight, I was on hands and knees, flashlight in hand, allen wrench ready, trying to figure out exactly what the issues was.

So here we are.

Oh, and another thing.... Hospice called earlier today.  The doctor wants to make a home visit.  He explained it's just something to get ahead of.  Something to talk about.  He wanted to discuss what the next year might look like based on the last year of changes.

Hospice.  Even if it is precautionary, it bums me out it's on the radar.  I am super grateful the VA takes the initiative with stuff like this.  And that Luther's super open to talking about it.  But still... it weighs heavy.

Luther asked me to sleep with him tonight.  Generally, we sleep in different rooms.  Tonight, he asked if I'd sleep near him.  He's so fragile.  My heart breaks for him.  For us.

Sunday, August 7, 2016

How do you convince someone they're not a burden?

Is it really any wonder I've built up this giant wall to prevent FEELINGS?  My wall has a moat to make it even harder to get in.  I'm behind the wall in a gigantic suit of armor.

Yeah yeah yeah, I know.  I know everything.  I do!  About feelings, anyways.  If I keep the wall up, I can't experience any true feelings, good or bad.  If I keep the wall up, I eat or drink or overindulge in some way that isn't really good for me.

But you know what?  I need this wall right now.  I cannot, I CANNOT feel this grief, this sadness, this frustration and loneliness.

I wish a part of me was awesome enough to put these feelings in to working out or taking walks or gardening.  Something more constructive.  At times, I do... I rally and get it together.  What choice do you have?  Feeling not awesome all the time gets old.   Plus I have this thing I have to do which is not letting my sick husband feel any worse by my depression.

The thing is, apparently I have.  OMG.  I can't stand it.  He said to me, in this heartbreaking way, that he hates being a burden.   It takes my breath away to imagine how he feels.  I just can't.

I dismissed his feelings with "you're not a burden" and left it at that.  Which, on my part, was not the best thing to do.  One of those feelings lessons I've learned is YOU GET TO FEEL WHAT YOU FEEL.  Me telling him he's not a burden negates his feelings.  I didn't let him talk about it.  I shut him down.  As if me saying "no you're not" makes him feel instantly better.

Tonight,  I talked to him about it.  He did admit that sometimes I say things that hurt his feelings. My heart cracks in a million pieces thinking this.  Words are so hurtful.  Sometimes they fly out of my mouth before I realize what I've said.  I do try so hard to stay quiet, to not let him see my grief or frustration.  Clearly, I haven't been doing a great job.

We have home health care now and that's different.  Ed begrudgingly accepts that I need help.  More for my mental state than physical.  I think he's a little hurt that I don't want to spend 24/7 with him.  I mean, he's stuck in this body 24/7.  He doesn't get to go anywhere.  He doesn't get any relief from ALS.  Why should I???   The home health care aid gets here and I pretty much run out the door.  He sits here for 4 hours with a stranger.

Guilt is a terrible thing.

Even writing this isn't helping me sort things out.  I think I'll just go hang out with him for a while and hope we both fall asleep early.

Wednesday, August 3, 2016

just a quick update - i got some sleep & Ed's ok!!

Posting updates at 4 in the morning isn't always the wisest idea.  I should make a rule to post only in the light of day!  I did feel pretty crazy.   A moment of thinking I wasn't able to take one more step.  I was so tired, so frustrated.  

One thing I've learned along the way is time will just keep moving and usually, the mood moves along with it.  The sun comes up, I take the dog for a walk, make Ed coffee.  You just get up and keep moving forward and suddenly, you aren't stuck in that same sad place.

So right now, as of 6:30 on Wednesday night, all is a-ok.   Ed's slept all day. I'm hanging out.  I got some time off this morning because a home health aide was here.  We really have no plans for the rest of the week, which is good.  

Time to rest, catch up on sleep lost over the weekend.

We have a clinic next week so I'll update everyone then on how he's been doing over the last 3 months.