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.


  1. I agree, he is very fortunate to have such good benefits. Yikes, can you imagine trying to manage without the special equipment and home health assistance? You maybe could do it, but both of you would be exhausted.

    1. Liz - i'm exhausted now with the benefits we do have. It's sort of learning curve after curve. Once I get one thing under my belt (like managing his feeding tube) another thing pops up. I guess it's the nature of this. So my heart goes out to those families who do not have the resources we do.

  2. Your grace and gratitude is wonderful. Your families must be so proud of you.

    1. Thanks, Lenore. My family is here and the support they give me is amazing. Friends too. Luther's family is kind of spread out and far away but we feel their love too!