Friday, June 13, 2014


4 am.  Awake.  So tired but I can't fall asleep.  Fortunately, CSI Miami is on and that tends to put me to sleep.

I was watching the videos from Ed Dobson, an ALS person (the videos are linked in the last post) and I am feeling pretty validated in having these fears.  He says when you live in fear, things become overwhelming. This is where I'm at.  Plus being tired all the time.

Luther says he doesn't cough much and it doesn't bother him.  Luther coughs all the time and it bothers me. Whether we go out to dinner and he starts choking or he's just sitting down stairs, he coughs then chokes a lot.  Let's say minimum once an hour but generally, it's several times an hour.  This is why I'm awake at 4 am. This is partially why I'm tired all the time because I wake up at least two to three times a night because of it. Generally I fall right back asleep.

So what is this living in fear thing about?  It's not like a 'what's that noise' in the dark fear.  It's hard to explain.  Fear of the unknown?  I don't think so.  It's more fear of the known.  What's ahead.  The fact my boyfriend is dying a slow, ugly, horrible death and we're watching it creep along.    We know what's going to happen next.  He'll lose mobility in both legs.  He'll start drooling soon.  He won't be able to get out of his wheelchair on his own.  He'll stop talking.  He'll be frozen, he'll be able to feel things but can't move.  He'll stop swallowing.  And then he'll die. I fear every single step because even though I know it, I can't really even imagine it.

I don't even think about it much except for times like now, 4 in the morning when I can't sleep.  As each thing occurs, we seem to just accept it because the onset tends to happen so slowly.  Luther might say this is happening faster than he planned.  And yet, it's one of those things that you see every day so you become a little more acclimated.

This fear is more... simmering under the surface.  Not acknowledged every single day but it's there.  Can something be subtle and pervasive at the same time??  It's just there.

There are moments of being super overwhelmed by it.  Like this morning when I was having a breakdown because I couldn't find my leggings.  It wasn't the leggings.  It was the fact I was leaving Luther alone, I was tired, pick a million reasons why.  It wasn't the fact I could not find that pair of leggings that aggravated me. It was the realization that this is my life.  Our life and it scared me in that moment.

I try - and usually do - live all those cliches.  Live for today. Be happy now, be grateful for what we do have. Generally I do a good job.  So does Luther.  He does an incredible job.

I don't like it when people tell me to get over it.  Or get upset with Luther because he's not helping me more. I cant impress on people enough that he can't move much anymore.  He sits in the basement 8 hours a day, waiting for me to get home from work.  He can't use the computer anymore.  I was upset that he wasn't ordering groceries to be delivered -- until I realized he couldn't use the computer screen anymore.  It's just one more thing to add to my list.

It doesn't seem like a big deal, does it?  Just go online and order groceries. Stop whining.   Just do it.  There are days, though, it's all I can do to get us fed, get us dressed, ready for the day, work, get home, hang out for a quality hour or two that doesn't involved meds, feeding tubes, talk of plans or feelings or the future then get him ready for bed and do it all again.  Ordering groceries gets shoved to the back of the list like 1000 other things.

Get help, I hear.  I have, to some extent.  We have home health care 3 days a week from 10 - 1.  We had a woman we liked and now she's leaving.  We haven't met the new guy, he didn't show up on his first day.

The health care person is supposed to bathe him, help him with washing his face, brushing his teeth.  But Luther feels odd doing that.  He was getting to a point he was feeling more comfortable with the woman but now we're starting over.  I have to respect that Luther doesn't want a stranger hosing him down.  At some point he has to get over that but right now, I'm not going to force him to do that.

I don't know.  I can't even explain it here.  I start out talking about this large, looming feeling and get caught up talking about one specific thing.  Ordering groceries.

I am not overthinking this.  I am just thinking about this.  How can I not??

Yes, yes, I'll make my lists, I'll get stuff done.  I'll put one foot in front of the other, I'll ask for help, I'll find the balance, I'll figure it out.

In the meantime, at 4 am, with my eye twitching, with heartburn and a charlie horse in my left calf, I think it's ok to be scared, to feel overwhelmed, to have a good cry and just feel tired.


  1. If someone told you to "get over it" I would like to slap that person. Grrrr.

    I think there are web sites where you could set up an account and it will organize the effort of people helping you (I.e. So you don't end up with 12 people randomly showing up with a casserole on the same day). Maybe it's time for that...

    1. Hi Liz. I think the 'get over it comment' was done out of love and care - I think people aren't sure what to say sometimes. My sense is it was more in the sentiment of move ahead, carry on, you can do it!

      Yes - I am getting to that point where we need to ask for help from friends. Many times, it's just having someone check on Luther, hang out with him for 30 minutes (sometimes that's all he can take...) - you don't even have to talk! Just spend time.

      Thanks for the suggestion, Liz!!

    2. Here's one option - I think a friend used this one:

  2. Okay, has anyone seriously criticized Luther for not helping more? They need to get educated on what ALS is before they speak. Honestly, most people will never face anything as harsh as this and some just cannot think it through. Lynn, my number is 612-388-7510. We can make time to help with everything from mowing your lawn to just hanging out with Luther. Maybe come over with a movie and a pizza to take your mind off things, make a store/pharmacy run for you. Whatever, just call me and I will make time. I am so sorry this is happening to you two, but at least friends can lighten the load a little when you are ready for that.