The Steve Gleason documentary

I watched the Steve Gleason documentary yesterday.  I purchased it awhile ago but didn't think the holidays would be a good time for me to watch it.  I loved it.
You know how when you are first married and suddenly all the movies of married couples are just funnier.  Or when you have your first child and now all the programs of babies seem funnier.  It's all just where you are in your life that bring more to the art you are experiencing.  Who would have ever thought that a documentary of ALS would make me laugh?  It also made me cry but that, I expected.  This film is just so very real.  There was one part where his wife was in a separate bed from him and he is typing out his disappointment in something she didn't do and it was like I was hearing Mike all over again.  To hear her say "ok" without even looking up just spoke volumes to me. 
There aren't direct parallels in their relationship and mine with Mike but when it comes to how the ALS affected them, that's when I felt connected. 
Living with ALS even as a caregiver is lonely.  Very few people really grasp what your lives are like and now I am watching this and thinking...... Wow, it wasn't just us.  Of course, with Steve being an NFL football player I assume they had resources that Mike did not since his football was college.  Their outings showed a lot of people helping.  I would have given anything to just have someone sit next to Mike so I could take a shower some days.
I highly recommend watching this movie, but to tell the truth, it may not mean as much to you as it did to me.  Just like all the other examples I gave of why things speak to you, this one might not.  But if you are interested in a window view of the life of someone living with ALS, this movie gives you the seat of the house.

New Year..... now what?

One thing that was in my face apparent when it came to finding qualified nurses for Mike is that.... there aren't any in homecare.  This isn't anything that I have experienced with my girls in a while because of the 4 nurses I had here for them, the longest employed had been 14 years, the most recent was 5 years... and that was my brother.  When I got out of nursing school, I had no intention of being Mike's nurse but I went to school to be a paid provider for my girls (allowed in Ohio after 18 years old and if working through an agency).  So when one of the 4 nurses became increasingly disinterested in doing more than the bare minimum and consistently showing up late, I was hesitant to fire hire knowing that finding nurses is difficult.  Made even more difficult because my girls can't tell someone what they need.  Before making the difficult decision to end her employment, I talked with the other nurses to see if they have any intention of changing their schedules.  Mostly the one who had been here the longest.... 14 years..... even though she was only working 18 hours a week.  The one I was firing was working 20 hours per week.  No one indicated any desire to change or reduce hours so the next time the nurse was late without explanation (and this time with eye rolling) I fired her.  This meant I was now going to be working 36 hours a week here.  When I say working... I am working, it's a job taking care of my girls.  They are dependent for all care and nursing skill is required to keep them healthy.  Also, when I say I'm working 36 hours a week, I'm not including the nights.  Every single night from midnight to 8am I am up multiple times a night to keep them healthy and meet their needs, those times I am not paid for. 
I was working out pretty good, I was enjoying providing more direct care for my girls and didn't mind staying home more.  I still had M,W, F evening to go out with friends.  And then... the nurse who had been here for 14 years who the month before told me she didn't foresee any changes in her schedule QUIT.  She gave me notice and it was amicable, but add her 18 hours a week to my 36 hours a week (add another 48 for nightshift) and I am now working much more than I ever intended. 
I'm tired.  I'm still glad to be providing direct care for my girls, but it takes a lot out of me.  My only free evenings now are Monday and Friday.  Unless I hire someone else, which scares the shit out of me. 
The one I had fired sent me a text asking if she could come back for 12 hours a week.  I considered it, afterall, she was trained and she knows what to do even if she sometimes chose not to.  I told her I didn't have any openings. 

For the past couple of days Taylor has been running a fever.  Not too awful high, and responds quickly to the Motrin and she isn't showing me any other symptoms so I'm assuming it's viral.  My nursing mind is very rational and usually spot on.  The Mom side of me trusts that I know my girls and I'll act appropriately.  But there is another side of me now... the side of me who watched Mike die.  That part of me freaks out with every sign of illness.  Every time their temperature increases and they have that look on their faces telling me that they don't feel good, I relive Mike's death.  It's painful.  This time, it has been made worse because of the rest of the world celebrating.  New Year is a big deal to people.  I'm jealous of their carefree partying and their hugging and resolving to do things different starting "tomorrow".  I'm jealous, but then I'm grateful.  I'm grateful that we aren't in the ICU.  I'm grateful that all of our needs are met. 

Today, I'm tempted to rehire the nurse.  I feel like I am still healing sometime from watching Mike die and it is going to take some more time to gain some coping skills.  And then the next second, I don't want to give up their care to anyone else.  I want them to have the hands on care from the one person on the planet who loves them the most....me.

So..... Happy New Year!  Let's all hope for the best.