Thursday, October 16, 2014

4 a.m. - can't sleep. What's bugging me?? I don't have ebola...

I haven't had a bout of insomnia for a while.  Quite the opposite - I end up sleeping a lot, random naps throughout the day.  So what's on tv at 4 am?  Doomsday Preppers.  Have you ever watched that?  I'm in no mood for crazies at 4 a.m.  I could watch the news but it's all ebola.

I'd prefer not to watch anything about ebola.  What an overwrought moment.  I heard something that in an election year, the party in power wants to look like it's in charge, so they're creating all kinds of new rules.  The party out of power is creating chaos in order to prove they should be in control.  Pick a thing to keep our focus away from anything that really matters - oh!  hey!  ebola!

Anyways - here I am, all cozy and tucked away in my ebola free living room.  4 a.m.

I went to my first ALS caregiver support group.  Maybe that's on my mind?   The weird thing about ALS is there's no predictable progression.  Unlike ebola, where you get a fever, you get nauseous, you have chest pains and coughing and then you start bleeding from your eyes.  It's a fairly "set" progression of symptoms.

With ALS, you just don't know.  For some, it affects mobility (like Luther).  For others, it affects speech.  For some, the deterioration is fast.  Others, it's a slow, uncertain loss.

So here we are, a group of men and women caring for our loved ones and we have no touchpoint, no place in the progression of the illness to say - oh yeah, I totally know what you mean by that symptom.  I understand how you feel because that's what happened to us.  Instead, it was more like - oh, your guy can still walk but you have to aspirate him and he can't eat?  My guy can't move his arms but he can talk.  Your wife isn't in a wheelchair yet but needs a breathing machine?

The main thing we had in common is that we were all really sad.  Really really sad and really really tired.   I noticed each one of us was holding on to our story by a thin, scraggly string of hope and strength and as we told our story that string just unraveled.

I noticed the desperation in each person's story.  The loss of control, the loss of a life that was supposed to be a certain way.   The loss of self, of time, in some cases dignity.  Perhaps even loss of compassion as our lives become more consumed by ALS - more consumed by the act of care giving.

What we gain is guilt over having these feelings.  I mean, we're not dying, right?  How could I be so selfish to think this is a drag?  That I'm tired?   How can I say I'm worried about my future when - at the very least - I have a future?

Certainly, the group is a place to say things aloud we keep deep inside.  Share the feelings we can't say anywhere else, to anyone else.  Our commonality is we're caring for someone who has a very uncommon disease.

It was a heavy hour.  I felt like I needed a support group for the support group.  It shook me up.  In both good and not so good ways.

Good:  I've said this before, but Luther is pretty awesome.  More and more I realize how lucky I am to have him.  He is open and he listens.  He thinks about me and he hasn't let this suck him down. I'm so lucky we have the VA, that I don't have to keep working full time, so incredibly lucky we have the support system we do.

Not so good:  I realized the challenging road we have ahead.  It's hard watching someone lose himself right in front of you.  I take nothing for granted anymore and it's tiring being on high alert all the time.

Good:  I'm supremely lucky I have the family I do.  I stopped at my mom and dad's house on the way home.  Renovations have started.  Have I told you? We're moving in with them.  Hopefully before the snow flies.  We live in a three level townhome that is impossible to navigate.  So mom and dad are making their house accessible and we're moving in to the basement.  The garage leads in to the basement so we're basically taking over the lower level.

The fact my parents have stepped up - no questions - knocks me over.  I said that to my mom tonight: I'm overwhelmed at their generosity.  She said, yeah, this renovation is a big deal but we're family and that's what families do.

I don't feel super sleepy, but I'll give it a whirl.


  1. I hesitate to say this, but it almost sounds like that support group isn't the right thing for you right now? I'm sure it's good to be able to commiserate with other caregivers, but if it ends up making you feel even more anxious about what's ahead...I don't know.

    1. Liz - that's good insight. One of the women there said the same thing. I find it interesting it's not somewhat moderated by the group leader. I realize the goal is to let people talk freely and yet, I almost feel like there should be some reaction from the ALS leader in terms of offering up *some* kind of advice. Not necessarily a perfect solution but something to read, a suggestion they've heard in the past, etc.

      I go to another caregiver support group every Friday that is a lot more action oriented, which is great but every other caregiver is dealing with dementia. Although we share many of the same issues, it's hard to identify with people dealing with a different disease. But maybe with both groups, I'll find the right mix??? Plus, the ALS group only meets once a month so there's some "regroup" time...

      Thanks, Liz :)