Wednesday, August 20, 2014

The Best Laid Plans....

The past 3 days have been a whirlwind.  I think we've handled it surprisingly well, but I felt a bit discombobulated until I sat down here to write.  I have taken a breath, I have a Sonic drink, mom is napping, my son is at football and my daughter is on the i-Pad. 

I just felt my shoulders relax for the first time.

I think I can actually tell my story on PLAN for One Word Wednesday over at my website, My Sweet Peanut.  I wasn't sure - even though I was convinced the prompt couldn't have been more perfect.  I was too in the middle of it to think straight!

If you're new here - mom has Alzheimer's.  The all-the-way-gone kind.  No short term memory (and this is not an exaggeration) and almost no long term memory to speak of.  She has flashes from her past that come out in dreams or catnaps or out-of-the-blue conversations that make absolutely no sense in this universe, but are clear as can be to mom.

Mom woke up Monday morning with a sore, slightly swollen wrist.  No evidence of a fall.  No limit in mobility of her hand or wrist.  Probably arthritis.  One of the more advanced, more awful flare ups, but arthritis, nonetheless.

Monday was also the first day of the last week of summer vacation for the kiddos.

And the first day of fall dance for my daugher.

And the last week of 2-a-day football practices for my son.

And the middle of an 8-straight-days of work for my husband.

2 PTA functions.  One cheer get-together.  A pre-season football scrimmage.  The Browns pre-season Monday Night Football game (yes, that is a priority and part of my PLAN!).  Sneakers that need to be purchased.  A Sam's Club run on the docket.  A pantry clean, 2 closet reorganizations and a donation run that all needed to happen.  Plus all the regular stuff.

We had PLANS! 

And because mom has to be supervised 98% of the time, we had to organize our PLANS thoroughly to make them work.  And because mom has Alzheimer's, she has no recollection that she has a swollen, sore wrist so she aggravates it over and over and over again by over-using it or leaning on it or being too aggressive with it.  And she has to have a thorough explanation of what happened (we have no idea) about every 4-5 minutes. 

It's hard to execute a PLAN when you have to take 2 minutes every 4 minutes to explain a story that has no hope of being remembered.  To muster the kindness it takes to tell the same story 100+ times in one day.  To know the repercussions of limited physical activity on someone who is 86 years old and try and fit some PT exercises into your already tight PLAN.  It was mind-boggling (or maybe that's just me!)

The first part of the PLAN to get tossed out is anything non-essential.  Pool time.  Sonic time.  One last trip to the park.  And that can make me a grumpy, resentful caregiver.  If I let it. Okay, fine - we'll clean the panty - it's right beside mom's room - I can straighten and explain all at the same time!

Of course, we needed a cherry on the top of our week, so we ended up needing a home health nursing visit.  Then a doctor's appointment.  A trip to the hospital to get an x-ray on mom's hand & wrist.  And most disturbing, putting mom in the car. 

Mom HATES to leave the house.  She is terrified.  It wasn't too bad going, but the stop on our way home to get my daughter measured for her cheer belt was fell asleep, woke up and went immediately into panic mode.  She FREAKED OUT.  I used my best stuff - right there in the parking lot of the middle school, ended up singing "You Are My Sunshine" and we got through it...I can assure you that wasn't in the PLAN!

Traditionally, I do some of my best work in a crisis...but when I am frazzled and tired and feeling a bit sorry for myself because of missing the pool with my kids...well, you know....

So, I changed the plan - I had to re-forecast, as my friend Diane reminded me today.  And we are calmer.  There was some doctor stalking to find out what was up with mom's wrist - not broken (Hallelujah!).  There was an unexpected trip to the pharmacy.  There was an extra football meeting.  And the last hurrah of fundraising for my son. 

But there was also Mina - which meant we did get a quick trip to the pool and finally, the blue slide was conquered by my daughter!  We snuck in a Sonic drink and some much-needed caffeine for me and a cherry slushie for mom. 

We make it work.  I let it make me nuts sometimes.  But we make it work.  We're family.  And family is always more important than the best laid plans of mice and men...*

*My mom always used to say that!...the mice and men part, not the family bizarre these days to think of mom quoting Burns or Steinbeck or wherever she got it!

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...

Wednesday, August 6, 2014


I decided to not spend too much time thinking this one through.  I had a thought (no, not the "Danger, Will Robinson!" thought I had while typing up One Word Wednesday over on my caregiver website My Sweet Peanut.  A different thought and I've decided to run with it!

Today's word prompt is DANGER and although there can be a lot of DANGER involved with caring for a loved one with Alzheimer's, I decided to share a different DANGER - the one floating around in my head this week...

The DANGER of becoming overwhelmed.  The DANGER ZONE of caregiver burnout.

I am feeling it this week.  I am certain it's because mom has been in a negative place.  Fighting the things that are best for her.  Fighting the exercise.  Fighting the memory games.  Fighting most activities (except eating - she is still really snack-y!)  And arguing with everything.

And complaining.  Constant complaining. 

She has had arthritis for as long as I can remember.  Since her early 40s.  In her hands and especially in her feet and knees.  She worked on her feet most of her life - in heels, because that's what women did "back in the day".  And it's taken it's toll. 

But lately, since she can't remember anything - even her own past - every ache and pain is brand new and she wants to talk about it.  Ask about it.  Complain about it.  Whine about it.  Moan about it.  And she has taken to making faces and mumbling under her breath...unkind faces and unkind mumbles.  It's exhausting.

And since she is fighting with everything I can think of that might help her feel better....stretching, using heat and ice, doing her therapy exercises, walking and wiggling hands and feet, drinking lots of water, sitting up a little bit straighter, moving around from place to place and seat to seat.  It's left me at my wit's end.

It's been over a year since mom moved in.  There have been a lot of challenges.  But this new 'victim mentality' is threatening my ability to be a positive carer.  And as I was telling a story to my son, during our 3-hour Mina Break today, I realized it was something my very own mother taught me early, early on.  Not just taught me - drilled into my head!

SHE is the one who had zero patience for people who acted as victims.  For people who pushed all ownership and responsibility off their own shoulders and blamed others for their lot in life.  MOM who used to lecture me for anything that even looked like laziness or complaining or whining.  I can still hear her saying "If you've got time and energy to complain about it, you've got time and energy to do something about it!" 

And I've decided that's why it's bothering me so much.  That's why I can't get past it.  That's why I am grinding my teeth more than usual and biting my tongue and counting to 10 and yoga breathing and taking a quick walk into the backyard to "take out the trash" for a breath of fresh air.  Why the mirror and pickles and all the other tricks aren't working as well as they usually do.

And although I've said and typed and written it time and time again - it is really hard to get used to the person who in body is your mom, NOT BEING your mom anymore in spirit and soul and attitude and actions.

Perhaps writing once again has helped me avert the DANGER ZONE of caregiver burnout.  It really does help to put it all down.  But I am tired.  And tired is a very DANGERous place for me to be.  It shortens the fuse.  Shreds the filter.  Hardens the tone.

Prayers would be appreciated as I work through this.  Because, like so many things with Alzheimer's - this negativity could be our new normal.  It may never go away.  Or it may stop tomorrow. 

Regardless - I made a commitment to my mom to take care of her and that doesn't mean just going through the motions.  She deserves my kindness and my patience and my love and respect and energy.  So I will try and move myself out of the DANGER ZONE every day so I can fulfill my commitment.  Wish me luck!