Anticipating Discombobulating!

One of my favourite words in the English language is the word “discombobulate”.  It has it’s origins as an early american slang word that means to confuse, disconcert or befuddle.  It also means to cause to be unable to think clearly.

I think I first really came to appreciate this whimsical word when I was working with 2 little autistic girls in kindergarten.  The one little girl would emphatically complain, ” I’m discombobulated!!” whenever she was overwhelmed or confused.  It was the perfect word to describe how she was feeling and it has become my go to word when I also am confused or overwhelmed.  The way it bounces around on your tongue is exactly how my brain feels as everything is bouncing around in my brain.  Thoughts are pinging back and forth with no rhyme or reason.

I think this is a wonderful word for us on the autism spectrum.  It so thoroughly describes how we feel when too much is coming at us, when we are totally bewildered with the world around us.

I have found myself saying this word a lot lately.  It seems my world is ever changing and confusing and as a result I am totally discombobulated.  Let me give you an example.

My elderly Mom fell last week and she is getting steadily weaker.   She told me the other day while crying,  that she didn’t think she could get to the bathroom by herself anymore.  I went into hyper-alert mode where I felt something had to be done to address this new state of affairs.  I asked for more PSW support,  I asked for volunteers from my church to help stay with Mom while I did errands because I did not think I should leave her alone.  With some people lined up I felt more secure in thinking I had tackled the problem and Mom would be safer.  The next day Mom was in good spirits and told me she could get to the bathroom by herself – thank you very much!!  So this is where I suddenly get very discombobulated.  The whole scenario has changed.  What happened to the way she was feeling the day before??  How do I plan for Mom’s care when things change so drastically from day to day??

I have learned that this is the new normal state of affairs – total discombobulation!  I never know which Mom is going to wake up – the weak, struggling mom or the confident, cheery mom.  And how do I look after her effectively when each day has the potential to be so different?  I have had wise advice that I just go with the flow and do my own thing like I have always done.  Continue to do errands when she is napping, get her to go to the bathroom before I go out, remind her she has a lifeline she can activate and that I always have my phone on me.

Even though I love the word “discombobulate” I detest how it makes me feel.  It’s like living with pain in your brain.  It’s like you are walking on jello.  Everything is all wiggly and jiggly.  Nothing is for certain or stable.  Not a fun state to be in.  Looking after Mom is often so discombobulating which just adds to the stress I am under but it’s all part of the journey I am on.  Travelling along the road of Mom and me together and suddenly you hit a mess of potholes and you bounce around like those ping pong balls in a bingo machine. And let me tell you,  our roads are full of potholes especially this time of year.

Well, so I am anticipating more discombobulation.  Comes with the job description.  It’s a small consolation to at least have fun saying the word when I am in that state.  DIS-COM-BOB-U-LAT-ING!!!!!

Mom’s Theme “I’ll Do It My Way!”

Image result for frank sinatra quotes my way

Mom’s name could very well be Francine Sinatra, the female equivalent to Frank Sinatra.  I’m sure her new outlook on life at this time in her life is “I’ll do it MY way!”.  She is exasperating sometimes.  I never realized that Mom was so stubborn.  Now I know where I get it from because I am about as stubborn as they come.  I guess as I was growing up Mom was kinda the boss of the family so she got to do what she wanted but now as she is a frail elderly woman at a time in her life when most decisions are taken out of her hands and she has little control over her deteriorating body she has resorted to resisting anything and everything that is asked of her even if it is for her own good.

Mom is like a rebellious kid and all I can do is look on with exasperation and let her do her thing.  It’s the last bit of dignity she has.

So what do I mean by her being rebellious?   Well,  she’s supposed to drink water for her diabetes.   She won’t.  She’s supposed to keep her feet up to help with the swelling.  She won’t.  She’s supposed to do her exercises.  She won’t most of the time.  She’s supposed to have a shower twice a week.  She laments, complains and you just about have to take her kicking and screaming to her shower ( not literally),  She’s supposed to use her aid to help her breathing.  She won’t.  She ‘s supposed to work at coughing up the accumulating phlegm she has.  She won’t.   She has let me know loud and clear that she WON’T wear compression stockings if she needs them.  She’s supposed to go to the bathroom more often than she does.  She won’t.  I’m surprised she hasn’t told me that she WON’T go to her own funeral! ( sorry, just had to put that in)

So what does one do with a rebellious 89 year old child??  Well,  I used to harp at her to no avail.  So my next step is to write out a list of things she is supposed to do and tape it close by her then leave her to her own devices.  No more harping, no reminders.  She’s got the list.

I understand her need to do this but unfortunately the only person she is hurting is herself.  She asked me last night why she was getting swelling in her legs!!  I have to bite my tongue and sweetly answer her.  She gets lectures from her doctor, the nurses that come, the PSW’s that come.  She doesn’t need to have lectures from her own daughter.  I need to be on her side not against her.

It’s so hard watching her deteriorate from her own stubborness  but I need to give her some control in her life.  With her probably being on the spectrum as I am, I know the need to have control over our circumstances.  It makes life more secure, more safe.  If this is how Mom needs to be to get through this very difficult thing called dying then I need to step back and let her be despite the fact that every ounce of me wants to have her keep going on as long as possible.  I don’t want to lose her.  It’s a terrible predicament to be in.  It brings anguish to my soul and tears to my eyes.  Sometimes I have to leave her, go to the basement and just cry and cry some more.

The journey continues and I have to let her do it “HER WAY!”