Monday, May 26, 2014


I know this is happening.  My boyfriend is dying.  Slowly. Maybe fast.  I don't really know anymore.  I guess it happens in little increments before my eyes.  I just see it more clearly every once in a while and it's devastating.

It's hard to describe.  It opens me up so raw and wide, the feeling is so unfamiliar.  I've never had kids so I don't know that unconditional love feeling which I think is probably the same.  I guess I have that for my family.  With a child, though, I imagine their pain is yours.  Their joys are yours.

Tonight, we went for a little walk around the townhouse.  We walked up and around, not too far.  But it was too far.  I haven't seen this before.  His frailty.  I've accepted the fact he can no longer put his arms around me to hold me, to hold me up.  But this - these small steps, slow steps, the way he leaned in on me and watched the ground as he walked.

It was all I could do not to melt down right there.  We were talking about something - the weather?  painting the deck?  I can't even remember.  I just remember trying to keep the conversation moving, light, happy.

I don't want my boyfriend to die.  I don't want him to have this ugly, ugly death.  How can I be strong enough to hold the both of us up?

I will be.  This is just a moment.  I love Luther so much I only want him to be happy and I want to take this all away for him and I want these frail moments to feel ok, that it's ok for me to hold him up now.

Grieving sucks.

Thursday, May 22, 2014

Another revelation....

We can't really go out to eat anymore.  My revelation tonight is if we do,  we need to eat at finger food places.

We went to WA Frost, a super nice place with items like duck confit, braised lamb neck and artisan cheese trays.  The problem is he can't eat anything he can't pick up with his hands.  Even then, it's pretty tough.

I honestly hadn't even thought of this.  I wanted to take him to a nice place on one of our first really nice nights. But there wasn't much he could eat.

That light bulb thing happened... that moment you see something really clear.  I had this moment after Luther stopped choking.   Yup.  The cough and choke thing started in WA Frost after he swallowed something down the wrong side.

So that was bad but with his sad swallowing skills these days, coughing becomes choking which sound pretty scary.  And this time, it looked really scary.

He could not breath at all.  He was trying to be polite and not make a scene and cough really quiet.  I'm just sitting there frozen... what should I do?  I got the straw from his drink in to the glass of water (another realization:  always get a straw for the water, too) and just waited for him to either give me the "i'm choking for real" sign or start breathing.

Fortunately, he started breathing.  I honestly am not sure what I would've done if it went the other way.  I'm having a revelation right now:  I need to find out what to do when he starts choking to the point it doesn't stop.

In awesome, cool-cat Luther style, he practically picked up the conversation where we left off.  I'm near hysterical tears and he says something like "that oyster didn't taste like an oyster."

It was then I realized we can't go to restaurants like this.  Like Jax where they have the best steaks.  I was actually wondering - as Luther was chatting - if, the next time we go to Jax, could I ask the waitress to ask the chef if they could cut up the filet mignon and put it on a skewer?

The dietitian did make a point to tell me Luther did not want to use utensils anymore.  He couldn't.  How did I forget that when I made the reservation??

No utensils.  Creative menu planning.  Learning the heimlich maneuver.  Every day seems to hold a new revelation along with some old ones I'd forgotten and need to keep close.

Monday, May 19, 2014

Rainy days and Mondays....

Monday 5/19.  The home health care worker is here:  Beth.  She and Luther are downstairs watching the Price is Right.  Outside, it's gloomy and rainy.  I have the day off.   I'm upstairs listening to the two of them hoot and holler about prices.

Beth is really a hard worker.  I told her if Luther seemed tired and needed some space, she was welcome to come upstairs and watch tv or hang out for a while.  No way, she said!  She'd come up here and find something to clean.

We are fortunate with this illness.  Which sounds a little weird.  But the VA has determined ALS is a service connected disability.  Military people get ALS 60% more than civilians.  A lot of people who were in the Persian Gulf War and Afghanistan seem more prone to ALS.  Luther, however, was never deployed.  He's read studies that say it's linked to all the vaccinations they get in basic training.

In any event, because ALS is 100% service connected, we get a lot of benefits for free.  I honestly cannot imagine where we'd be if we were paying for a lot of these things.  Every day, I am proud of Luther for his service to this country - he's a 20 year veteran.  Even though he didn't see combat, he did some pretty nifty things.  He was the Deputy Director of Computer Crimes in the Air Force in DC!

Every day, I am extremely grateful that we have these benefits because of his service.

So Beth is free.  This past weekend, we picked out a wheelchair accessible van.  This is free.  It's kind of amazing and a huge relief.  We went to the dealership - it's called Rollx.  Jim, our salesperson, gave us a tour of the plant and it's pretty amazing.  In the end, with a touch of a button, the van will open the side door, lower the back and out comes the ramp.

I was grumpy this morning.  I don't feel like I get enough sleep.  Luther is coughing all the time now and it keeps me awake.  I snapped at him a bit.

But, as I sit here writing this, listening to the two of them chat and laugh downstairs, I know how lucky I am.

This is our van, but we're getting a black one.  I feel like I'm in the secret service!  Although I don't think they drive mini vans...  Luther won't do any of the driving, he just wheels up the ramp.  They're taking out the passenger seat so he can sit next to me.  The middle bank of seats are out but there are 3 more seats in the back.  We pick up the power wheelchair June 9 and the van should be available a couple weeks after that.

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.

Friday, May 9, 2014

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.

Wednesday, May 7, 2014

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.

Tuesday, May 6, 2014

sad little firsts....

I brushed his teeth

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

Sunday, May 4, 2014

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.

Friday, May 2, 2014

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.