Thursday, January 16, 2014

The sadness of illness

9 pm - Thursday night.  My cat is curled up next to me, which she never does.  I think I've ignored her.

Just finished helping Luther shower.  Before tonight, I only had to help him dry off. Tonight, I had to wash his hair, wash his stuff - boy parts and pits.  This is new.

I clean the bathroom while he sits in the shower and gets wet.  Then - to work washing him off. 

It's ok.  I'm a good height for him - he flings his hand up on my shoulder and I can get his armpits dry. When I was looking for love online, this wasn't really in my thought process.  "Short, mid-western nice girl, perfect height for tall guy to get his armpits dried off..."

It's a connecting moment, too.  Not sexy shower time. It's more practical than that.  The bathroom is super hot, he's got the space heater going, the hot water going.  He's always super cold. I'm all menopause and hot and it's a drag to be all steamy and damp so I'm drying him off in record time.  

We had our first ALS support group on Tuesday.  It was snowing so the group was small.  Only one guy in a wheelchair who's had this for 2 years.  There was an older man - 70's - with his partner.  A younger couple with toddler age kids.  Another couple our age.  These folks were like Luther; they'd been recently diagnosed and on the surface, outwardly, look fine.  

As you sit with them, talk with them, you realize each person isn't fine.  Like Luther.  They talk different. Move different.  Different is the new normal.

At the group, we did yoga.  It was great!  Both Luther and I have become pretty sedentary.  He's always tired and honestly, I am too.  This was adaptive yoga, developed by a man whose been paralyzed from the chest down for 25 years.   It felt good to touch Luther, help him stretch, sit up straight, help him feel like he CAN move.  

I realized a couple things:  first, how important it is for me to not be so tired.  As time goes on, it will be more than helping him shower.  I *HAVE* to change.  Second, we've kind of fallen in to this stupor, this sadness of illness.  We pretend it's all ok.  Maybe it's not even that top of mind or that prevalent... we just go about our day.

Although I want life to feel normal for Luther - and for me - I also know that each day is precious.  Each day he can talk to me, that we can walk together, is a precious commodity. 

We say cliche things like "today is the first day of the rest of your life."   Appreciate each day as if it were your last.  Live like you were dying (isn't that a song?).  But I don't consciously go about our day with these platitudes forming my choices. 

Instead, I have these moments - like at yoga - where I realize I need to flip that switch.  Find the balance between what feels normal and getting off the couch and digging in to the bucket list.  Or really, just appreciating the time we have together.


  1. I hope you two got to the south and the sunshine. It is a whole bunch easier walking in the sun if the snow isn't up to your ankle.
    Walking is a little challenging for Paula. She is "on my arm" pretty much all the time we are out of the house. It gives me a chance to squeeze in my elbow and remind us both that we are traveling as a pair now-a-days. We had one passerby who didn't speak english make a special effort to say he was glad to see us as a committed couple. That is one thing you two can do. Walk arm in arm and proclaim to all around, that he (she) is mine and I'm proud of the fact.
    Don't feel you have to hurry back north. Our snow will last for quite awhile.

    1. Hi Jim. I'm not sure if this reply gets directly back to you via some kind of notice?? This was such a lovely comment, thank you. I think of this every day. I get -as I"m sure many caretakers do - mired down sometimes in the minutiae of the actual caretaking and it tires me out physically and emotionally and there's more, heavier duty things ahead...
      However, most of the time, I'm - as you say - proud to have him on my arm and in my life.
      I did want to let you know I shared your message in my most recent post. I figured people could read this post, it was public... but if you don't want me to share it that way, I will take it down or edit it to remove your name.
      It is, however, such a lovely tribute to your relationship and to Paula, I thought it was a great reminder for us all.
      Thanks, Jim.