survival mode

It is impossible for anyone to know exactly what life is like for us right now.  I know lots of people have personal experiences dealing with cancer in one way or another, but every cancer is different, and every story is too.

I wish that I could somehow communicate the odd chaos of the past year and a half, and particularly how life has changed in the last three days even.  If you have ever been involved with being a caretaker during the physical and mental decline of a loved one, you might have a bit of an idea what it is like.  Add to that the preceeding twenty one months of battling cancer, and you have quite an interesting story going on.

We are at the point of making sure one of us is always at Mom and Dad's while we try to mesh four different schedules into the picture.   I am now rarely home.  There have been dirty dishes sitting in our sink for several days now.  But I've at least gone to sleep in my own bed so far each night, unlike my brother Jeff (what an amazing sweetheart he is).  I didn't go to work today and probably won't make it there tomorrow either.  I can't even remember what day it is or what happened yesterday versus today or Monday.  I'm always feeling like I'm forgetting something, followed by suddenly remembering something that I know I will soon forget.  It's just because the needs are so vast and so hard to fulfill, and I continually feel a sense of responsibility to take care of it all.  Even delegating or asking for help becomes difficult when there is no time to even make a phone call or write an email during the day.

My dad can be more easily confused or occasionally fearful now.  He is fairly talkative, but sometimes it doesn't make much sense.  When he is communicating well, it can sometimes be difficult to sort out what he is really trying to say as he searches for word choices.  A laugh, a smile, maybe even a one-liner, are treasured reactions.  At times, he can be cracking jokes and laughing at the strange predicaments we find ourselves in, and at other times, he is very confused and asking strange questions.  He often asks the same question every minute or so because he doesn't remember.  This is a new development for us in the last twenty four hours, and we are learning as a family how to respond to him in a comforting and clear way.

Tonight was a beautiful picture.  He wanted to get out of bed in order to enjoy some family time at the table.  So there we gathered, laughed, and had just enough sense of "normal" to relax for a few minutes before bedtime...where we would again make the tedious transfer between bed and wheelchair one last time before the end of the day's work.

I feel like we need help.  The problem is knowing what would actually be helpful.   It's at the point where I really don't know anymore until something randomly comes up that needs to be addressed.  None of us can really keep up with it all...and that can be frustrating for a to-do list person and problem solver like me.  I want to organize everything and tackle it in an orderly, efficient way, and that's just not life right now.  It's one day at a time, each detail as it comes.

I told my dear friend Rebe at the start of the day that I hoped it wouldn't be another "survival mode" day.  She looked at me and wisely said, "And if it is, that's okay too."

And it is.  It's just so odd to suddenly find myself there so abruptly.  The interesting thing is, even being there, something is so terribly and awkwardly funny about catheter adjustments and poop, especially when your father is having a good chuckle about it too.  Oh, how we Harrises love to laugh.

I love my family.  I love my Dad.  What a wonderful thing that we are together.