Wednesday, February 4, 2015

Turning that frown upside down or whatever

1:20 am, in a hotel room in Atlanta.  Luther is asleep.  Its eighty degrees in here, he couldn't get warm.  I am nearly naked, in a menopausal sauna like state. 

We had a couple nice days in Chattanooga with his son and grand kids.  I can't remember if I mentioned his son flew up to Minnesota and drove down to Chattanooga with us.  It was terrific to see the two of them spend time together.  It was awesome I had a side kick driving as well as another set of hands helping.

Today was a rough, rough day. 

Mostly, I accept the limitations of this illness.  I should say we accept... every inconvenience I feel, he feels a million times more.

Feeding him, bathing, dressing, getting him out of bed, packing the car, packing up the room... its all part of the deal.  We both get frustrated but overall, we are a pretty good team.

Today we took a new turn in the depth of how much ALS takes away from a person.  I won't go in to details ~ some things are too hard to talk about in specifics.  Today made me realize life is hard and ugly and unfair. 

We left Chattanooga toward Atlanta.  Traffic was bad. We are at the Omni, a really nice hotel.  Too nice?   You have to valet park, I had forgotten his meds.  We are in the north tower but parked in the south tower.   I couldn't go to the parking lot to grab stuff out of the car; it cost me five bucks in tips to get my car pulled around. 

I am restless.  Im glad he's asleep.  Im trying to find a bright side.  This isn't a vacation yet.  I don't know if it will be at all.   This is work.  This is a challenge I am not sure I am up to.  I want to get to Florida, get settled. 

Off to bed, maybe I can sleep? 

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