Wednesday, August 13, 2014

Anything but Routine

Today was One Word Wednesday over at my web site My Sweet Peanut.  The word for today is ROUTINE and I just couldn't quite find mine today.

I set alarms.  I made mental notes.  I had a plan.  Mom had a different idea.

It's funny that when I hear the word ROUTINE, I immediately think of my daughter dancing.  They choreograph ROUTINES for all the disciplines.  We order and bedazzle all manner of costumes to add a little expression to the ROUTINE.  She practices her "facials" in the mirror to make sure she is interpreting the music for the ROUTINE.  Her feet are in constant motion day in, day out, tapping, pointing, leaping out the steps of the ROUTINE.

She is creating muscle memory by practicing.  She is making the steps second nature so she can let go and just dance and express and be the ROUTINE.

When you have Alzheimer's, you lose your memories.  First it's names.  And words for common objects.  Then your short-term memory fades.  Eventually, you lose your muscle memory.  Even things that you've been doing for, say, 86 brushing your teeth, escape you.  Especially if you think about it too much.  It's the thinking.  Or the overthinking, really.  Trying to get it perfect.  Trying to make it make sense.  Trying to give every step a name.  To attach the exact, proper, appropriate word to each piece, step, action.

Imagine the frustration of staring at something you know you are supposed to know.  To understand.  To instinctively know what to do with it.  And get stuck.  No matter how ROUTINE. 

And, then to make it worse...not being able to find the words to ASK for help.  To clarify.  Because you stopped going with the flow.  You stopped letting it be part of your morning ROUTINE.  You made it an event.  A test.  An exam.

And because you have Alzheimer's and you don't quite understand what that means and you're embarrassed to admit it, talk about it, ask for turn everything into an event.  You put pressure on yourself.  You make brushing your teeth an exam.  And that makes everything harder.

And imagine you're a caregiver and you want to reassure your mom to just "go with the flow".  To smile and remind her that she does this every single morning and "she is awesome"! 

To watch the scariest (to me) part of dementia.  The forgetting of the ROUTINE things.  The last pages of the 'handbook' the doctor gave you that state clearly (and that you didn't believe could possibly happen when you read it the first time 8 years ago) that Alzheimer's can take away your memory of how to stand up.  How to walk and eat.  How to breathe.

"It's a natural as breathing".  A saying I've heard my entire life.  A saying that has been a saying forever because it's true...unless you have Alzheimer's.

I mean, BREATHING... How much more ROUTINE can you get?  "As natural as breathing!!"  And yet, Alzheimer's can take that natural tendency away.  It's terrifying.

So I push.  I set us up for success.  I maintain as strict a ROUTINE as I can. And I push some more.  And set another alarm.  And make mental notes.  And have a plan.  And wait and watch and pray and breathe...


  1. Oh Lisa this is one of the most profound posts you have written. You have nailed it! Routine...nothing is routine and yet we need routine to make it through our days. God Bless you and my prayers continue for you every single day.

    1. Thanks Paula...I'm watching mom forget how to stand up unassisted. It doesn't seem to have anything to do with strength. It has to do with stress and contentment and time of day. I am figuring out how to change the mood and take her mind of standing and then we try again once she's not stressing about it. Sometimes it works...but it shakes me. I get what that means. I am scared of what's next. And I hate it.

  2. Wow...powerful is such a scary thing we are living.

    1. I know...and as much as we KNOW - it's still unbelievable when it happens!

  3. You're doing an amazing job. I think this also highlights the many things we all take for granted. People get up on Monday morning, grumbling about going to work as they do their get-ready routines. We take all of these automatic things for granted and don't realize how lucky we are.

    1. As awful as it can be sometimes to have mom living right in the middle of us - I think it's a blessing for the kids to see how quickly you can lose your basic abilities. I am hoping they will learn to appreciate all that they have. To know that there may come a day when things aren't so "automatic"!