Three o'clock thoughts.... (same day)

Well.  Luther had to come home from work early because he is sick.  He is now standing here in front of me describing how awful it was to be sick at work and not be able to function.   It's an awkward, heart-wrenching thing.

The reality of this kicks my bitchy thoughts of getting an extra 1/2 hour of sleep straight to the snowy curb. That's kind of the rub.  I want to get to have feelings about that extra sleep (or whatever).

But then the reality of knowing I can pull down my jeans in case of a bad tummy emergency makes me see so very clearly that I can sleep later.

The cracks in my rose colored glasses keep getting bigger.

Five a.m. thoughts

This is super super selfish.  But sometimes I want something to be about me between me and him.

For the last year and change, life has handed Luther some pretty rotten things.  His son died in October 2011.  March 2012, we were on vacation.  On the second day, his back went out. He spent the rest of the week in bed.  A month later, he had a heart attack.  Recovery from that was a couple months.

Fast forward to June and then he had this mystery illness that we thought could be:

- rotator cuff
- pinched nerves
- sciatica problems
- back/spine issues
- lyme's disease
- muscular dystrophy

It was six months of testing with one whole month driving back and forth to Mayo trying to figure out what the mystery was.  At the end of that month (October) they would not tell us this was ALS.  Instead, they wanted to call it a protein disorder in the nerves - a chronic inflammation.

My point is, after seven months of living together, my newlywed phase was over.  It's become all about Luther's stuff.

None of this is his fault.  Maybe the heart attack but really - I can't put that on him right now.  It's the stuff, health issues and the giant emotional wrench of his son dying, that has prevented us from doing the kinds of things that would allow us to bond as a couple.

Sure, this "stuff" has bonded us in an extraordinarily different way.   It has become more about caretaking than being a girlfriend.

It's 5:15 a.m.  I wasn't really ready to get up but I had no choice.  Coughing got me up.  He wanted to get dressed.  He doesn't usually get up 'til 6.  I was hoping for 45 more minutes of sleep.  Nope.  He wanted to get dressed.  He flopped back in to bed (after getting dressed).  He needs help getting out of bed.  This seems so minor but did I have to stand there and wait for him to decide to get up?  So I asked him.

No, he said, he'd try to get up on his own.  Right.  So now, I'm here, on the computer, waiting for him to call me.

I'm not particularly tired like I've been in the past.  I'm just... put out.  I know that sounds bitchy.  Most times, MOST times I don't get testy about helping him with the things he cannot do.  Because he cannot do them!  If he just wasn't trying, then I'd get REAL mad.  But he just can't do stuff so it's ok.

Except for this morning.  I wanted him to stay curled up in a warm bed for another 45 minutes and he wouldn't.  He wanted to get dressed and then lie back down.

I"m not angry.  That's too strong.  I'm vexed.  Perplexed.  Irked.  I don't get it.  Isn't that weird?  Such a small thing. And yet, for some reason, it's triggered this post.

I know home health care is getting closer and I suppose some of these things - getting him dressed, helping in the shower - won't be my responsibility all the time

It's weird because these are the things that bond us now.  And they are the things that vex me.  Weird feelings.

Wise words from my guy...

A thought that I've been having lately is one hug, one kiss, or one I love you left unsaid or undone is one less that I'll have in my life. 

I want us to be happy.

It's been a while...

I haven't written much here lately.  What is to say that I haven't said?  Broken record?

I use this blog as a way to vent.  A diary, I guess.  The support and comments I got in the beginning felt great.  Feels great.  And yet, I forget sometimes this is public.  I've come here just to write stuff.  Get it out of my head.  I don't write with an audience in mind.  If I did, I wouldn't swear.

Is what I say going to affect how someone thinks of me?  Of Luther?  Does every little thing I think need to be made public?  Does what I write need to be inspiring?  Positive?

Not that many people read this blog.  I can see the numbers.  At most, fifty.  At least about seven.  When someone reads this, I'm grateful to know someone has shared this part of my life.  I don't expect a comment or an answer.  I appreciate it when someone reaches out and shares their story or their feelings or their concerns.

I don't want to censor what I think, what I write.  But I don't want to worry anyone.  At times, I might write something that feel awful.  And then I forget to come back - maybe an hour later - maybe the next day - that something good happened.

Luther update:

He's been missing a lot of work so he made the decision to stop working.  We're not exactly sure when - he just told his boss last week and they're figuring out a good stop date.

A realtor is coming over this week.  We're trying to understand our housing options.

A home health care person is on the horizon... especially when he stops working.

Dragon software was ordered so he can use the computer with his voice.

Luther's more tired than ever.  He's still walking but the simplest things wear him out.  He sleeps a lot.

That's about it.  Not much new to report.  A good thing, I guess.

Perspective. Good Friends. All is really truly ok...

I'm just dang tired.  Mostly due to work.  I thought I'd have the day off Sunday so I was out late with friends - til 2!! - because i knew I'd be able to sleep in.  Oh silly Lynn!!  7 am Sunday got a call that the Sunday associate was sick.  I asked her to call everyone else but eventually, it was me.  I had to work.

I had all these thoughts in my head I was going to talk about here -- my good friends, the changes coming up in work for both Luther and me, getting a gentle kick in the ass from my mom (always needed!).   But you know what?  I'm too tired.

Putting on my pj's, watching some mindless tv and looking forward to having the day off tomorrow!!

Distance

I feel myself putting distance between me and Luther.  Is this natural?  A part of the process?

I pull away.  He pulls away.  We're both in our respective corners, avoiding each other.

We need to figure something out.  Not quite sure what.  How to have fun?

I want him to talk to me.  Come to me and say - this is what I can do.  This is what I want to do.  Rather than me driving the fun bus - or the whole bus - all the time.

I feel like a mom, not a girlfriend.  I sense that spells doom for a relationship.  Not even a mom, really. More like a robot helper.

Our relationship just became a little closer at 2:40 a.m. on 2/15/14

I spent the last several minutes helping Luther blow his nose.

The little things we take for granted.

His arms are dead weight hanging from his shoulders.  I can't begin to imagine.  It was the first time I saw his arms just fall, rock heavy back in to his lap.

If you've read earlier posts, you know he has this fling thing going on:  he flings his arms up to a particular target and he can generally maneuver them to work.  Sometimes he has to lean way forward and fling.  To comb his hair, brush his teeth, hug me.

I was still awake at 2:30 this morning.  He started coughing around that time...quiet and sporadic.  After several minutes, it didn't stop.  I think I wrote somewhere before that coughing takes up a ton of energy.  For you and me, that's ok.  For Luther, it's exhausting to cough and wipes him out for hours.

I got him a glass of water but he said he needed to blow his nose and I got him a kleenex.  He tried to bring - or fling - it up to his nose and it was like I threw a rock straight up in the air.  I watched his arms fling up and fall straight back down.  My heart sunk with his hands.

It's hard to blow someone else's nose.

I've fed him.  Brushed his teeth.  Put on his socks.  Pulled the covers up over him because he can't grasp the blankets.  Bought him a purse because he can't get his wallet or his keys out of his pocket.  And now I helped him blow his nose.

Love is a funny thing

Tonight, Luther told me this was the best time of his life because he was here with me..

When we met, it was supposed to be forever.  Or really, this last part of our lives.  You know, another fifty years or so.

Instead, we have two?  five?  Less than fifty.

My heart aches with sadness and fear but right now, the love I feel from him outweighs all of it.
For right now, I am a lucky girl.

Holding pattern

Things seem the same.  Back in a routine.  The rollercoaster is coasting.  Luther's arms are the same:  he can do some stuff but not much stuff!  But they haven't gotten worse.  He's still walking, talking.

The speech therapist we saw at the VA told us it's great the ALS hasn't affected his throat/speech a lot.  It's a little - I notice it - but not a lot.  He thought this meant it gave Luther more time.

We've worked out a few glitches in our communication.  Geez - why is that so tough!?  I know my parents - married 53 years - talk about how they're still learning to communicate after all this time.  I guess I shouldn't be so surprised we haven't figured it out.  However, it feels critical to get it figured out.  If we don't communicate effectively now, there will be a point he literally won't be able to.  We need to understand each other really really well right now.

Not much is happening and everything's happening.  We're talking to a realtor about wheelchair accessible homes.  What to do with the home I have.  We're going through stuff, purging.  It feels a little morbid but also feels lighter, too, if that makes sense.  Luther has a bunch of meetings with the VA:  adaptive driving, wheelchair stuff, occupational therapy.

Life is full of dichotomies - opposites.  Light and dark.  Feeling content with a routine but underneath the surface, life is moving at lightning speed.  Love and sadness.  Wanting to hang on to every moment, every thing yet feeling the need to let go of not only the physical but the emotional, too.

I suppose life is always like this but we tend to not notice.  We skate through - or sometimes plod along - our daily routines.  Now, there's a spotlight on everything.  Another dichotomy!  It's good and it's bad.   I have a sense of urgency about things that makes me feel crazy at times and then I have a sense of apathy that makes me want to hide under the covers... stay still.  Maybe it's trying to keep time from marching ahead?

I'll enjoy the momentary sense of routine as long as the illness lets me.  

It was a heck of a day....

9 pm - Thursday.  Worked all day, got groceries, picked up a pizza, have to go back up to the car to get the rest of the groceries and move my car.  Long day.

Yesterday was one of those really crappy days.  The kind you have to cry about as you're stuck in traffic, maybe sleep in the next day because it was just too much and then maybe write about it in a blog.

Cliches just don't cut it sometimes:  be happy for each day, live each day to the fullest, don't worry, be happy!  More like pull the covers over your head and make it go away.

Neither of us slept well Tuesday night.  We each got about 3 hours of sleep.  Mine was from working late, being wired.  His is from --- I don't know.  Pick a thing.... overactive brain?  Anxious?  You lie in bed, in the dark, surrounded by nothing but your thoughts.

Wednesday, Luther was going to work but decided to sleep in a bit.  I left for work thinking he'd be off to his work in an hour or so.

My full time person didn't show up for work.  She never called.  It was going to be a busy day; I didn't have time to monkey around with this.  I called her twice, texted her twice, no reply.

Fast forward about six hours and lots of confusing texts later, I was on the phone with my boss trying to figure out what to do with my associate when a call beeped in from a number I didn't recognize.  I didn't take it.  A few minutes later, I listened to the message.  It was from Luther's boss wondering where he was.

What?  It's 3:30 in the afternoon.  Where is he?  Why isn't he at work?  Did he fall down and hurt himself?  Is he dead?  My emotions, my brain, were on overdrive.

There's a back story to my angst and anxiousness about losing this associate since it just happened just a few months ago - the exact same scenario:  I lost a full time person who just never showed up.  Generally I can go with the flow.  It's retail and stuff happens.  I have a good staff who will rally and help out.  But this time - the first time someone didn't show up, it was hard and weird and stressful because my focus was on Luther. In October, we didn't have a diagnoses and were going through all the testing.  Driving to Mayo, figuring out what was wrong with Luther, figuring out work...

Now, three months later, here we go again.  This girl didn't show up, I flashed back to the weirdness in October and was trying to keep a lid on the freak-out I felt brewing.  And then, and then.... and then I get a call from Luther's boss for god's sake wondering where he was.

The lid just about blew off but not quite yet.  I called him and when he answered the phone, all chirpy and happy:  "hey baby" - that's when my lid blew.  I couldn't believe he was at home, just hanging out.   It's too much to say without a care in the world but that crossed my mind.  I get it.  I get it!  He's the one who's dying.  But geez.  My boyfriend didn't call his boss!  And I'm dealing with the EXACT SAME thing at work. It was a surreal moment.

I was mad.  Really mad.  Mad that people are selfish and this disease is selfish and I can't be selfish.  I'm mad that this associate didn't have the balls to pick up the phone and talk to me.  I'm almost MORE mad that Luther did the exact same thing to his boss and thought it was ok.

Mostly, I'm just mad this disease can't give me a normal day.

Until I Say Goodbye

Today I was visited by an 89 year old angel whose name is Claire May.  She must be five feet tall, she was wrapped in a fake fur coat and she came to see me at work.

The fist time I met her, maybe three weeks ago, she was in my store looking for a skirt.  She was using a magnifying glass to read the price tags and it had fallen on the ground and broke.  I picked it up and tried to put it together for her. We got to talking that afternoon about many things.  Her son, her eyesight, she'd been married for 60 years. As we were talking, another customer walked up and hugged me. We'd been talking earlier about Luther's ALS.

Claire May overheard this customer say she'd keep me in her prayers and asked why someone was praying for me.  I told her.  We didn't talk much longer.  She took my hand, said thank you for helping and she wished me well.

Fast forward to today.  Claire May came in, she approached me and said she had something personal to ask.  She wondered if she could pray for me and for Luther.  She said she'd been praying privately but she wanted to include us in her churches prayer chain.  She goes to church twice on Sundays and she was heading back.  She thought it was right to ask for my permission before she "went public."

How wonderful is that?  We open our heart, we share our story, we hold someone's hand and offer someone help - it's a new way for me to think, to act.  I think for many of us!  We're busy, we're consumed with day to day things, we don't talk to strangers, we keep to ourselves.

Claire and I chatted for a few more minutes.  I cried just a little and she held my hand again.  I walked her up to the front of the store and thanked her for thinking of us and then I cried a lot.  Fortunately, it wasn't too busy and I could take a minute to regroup.

Claire mentioned her grand-nephew wrote the book "Until I Say Goodbye:  My Year of Living with Joy" which is a woman's story of ALS.  I'll link the article about the book here: http://www.huffingtonpost.com/jesse-kornbluth/susan-spencer-wendel-has_b_2874476.html

I googled the book and found that the author - Brett Witter - is associated with the new movie coming out "Monuments Men" with George Clooney and Matt Damon.  Pretty cool!

In any event, the book "Until I Say Goodbye" is about a journalist who finds out she has ALS and decides to make the next year about creating as much joy in her life as possible.  She was diagnosed in 2011 and now is in a wheelchair.  She still writes using an attachment on her nose; her computer reads the dot she (or rather, her nose) points at a word.

This is her most recent article, celebrating resolutions and musing about dying.  Interesting things to think about.

Click here for the article:  http://www.palmbeachpost.com/news/lifestyles/susan-spencer-wendels-resolution-happy-new-year-an/ncZ6Y/

This is her website:  http://susanspencerwendel.com/