Wednesday, May 28, 2014

One Word Wednesday: Small

One of the most interesting things I have experienced since becoming a caregiver to my 86-year-old mother and her over-the-top-advanced-stage Alzheimer's is how SMALL my world has become.

Her need to have me near.  My need to make sure she is safe.  The lack of resources for Alzheimer's patients.  The routine that makes her disease slightly more manageable.  And her anxiety and paranoia when she leaves the house.  All of these contribute to a much smaller world for me.

I used to be able to run and meet someone for coffee or lunch without much thought or planning.  I drove 30 minutes into our downtown area to work every day.  I might travel across town to go to a new farmer's market or boutique or art fair on any given Saturday.  We tried to go to a couple of sporting events, a water park, a play, a museum and a festival or two every year.  We might stay the night wherever Murph's baseball tournament might be instead of driving home.  I saw a LOT of different faces over the course of a week.

Now I stay close to home.  I see my family and the people who are working with mom - doctors, therapists, home health aides, case workers.  We eat at home.  We watch movies at home.  I do all my shopping in a 2 mile radius of home.  If it weren't for my kids - I might NEVER leave my zip code!

My days are smaller too - we eat meals on a regular schedule.  We eat food that is familiar.  We watch the exact same shows every day.  We have the exact same conversations every day.  I might answer the same question 50 times or more every day. And we do as much as possible in the same order every day.  (which is why mom detests the weekends!)

And the strangest thing is - I don't really mind.  I get frustrated.  I get angry sometimes.  I feel "different" than most of my friends.  But in the grand scheme of things, I don't mind.  

I am actually enjoying the smallness of my life.  I am able to focus more on the little things.  I am more involved in my kids life.  I find great pleasure in my family.  I have noticed things in my neighborhood that I have probably been driving by for years oblivious.  I watch the traffic report on the morning news and feel grateful that I don't have to worry about that anymore.  The check out men and women at my local market know me and we chat.  They smile when they see me.  I get gas at the same place every week and know their names.  Peanut's teachers know me and wave or pop over to the window to share something about her day at pick up time.  I have found a rhythm to my new life.

I wonder sometimes if mom has to go into long-term care or this disease takes her sooner than later - will I be able to return to a BIGGER life?  Will I be able to swim in the big pond again?  Do I even want to?  I am still young enough to have lots of working left in me - so I guess I'll do what I have to do.  

But I have discovered a different side of my personality.  A new set of interests.  A new happy place.  And it's here in my SMALL world.  

I guess this is the blessing that comes with the burden of caring for mom.  The gift that is wrapped up in all the sad and awful things that are a part of Alzheimer's.  The silver lining around the dark cloud that hangs over mom every day for the rest of her life.

They say the world is once again a small town - of course, that's because of the internet.  My world is now a small world because of a choice, a disease and determination to make the best of things. 

Wednesday, May 14, 2014

One Word Wednesday: Frustration

There are weeks when I have to ponder what I will write on a One Word Wednesday.  Not today.  Frustration has been the word of the month!

Some of you may have read the story behind my frustration here.  And now, a blood clot, a trip back into the hospital for a 'procedure' and finally, back at rehab.

I am so tired.  And I feel like I should be more rested. 

I mean, mom's in rehab.  Someone else is doing the cooking, the cleaning, dressing, bathing, worrying at night.  I should be less exhausted and not more.  And I am FRUSTRATED!

And I am convinced I know the root of my FRUSTRATION:  medical professionals who think they know more about my mom and what is best for her than I do.  Or worse yet, medical professionals who know but are unwilling to go the extra mile to make a difference.  (as stated in an earlier post - my mom has been blessed with probably the best doctor and nurse imaginable, but the administration/system and some of the therapists leave a little to be desired).

All you have to do is pick up or log onto any random article or interview or expert on Alzheimer's to know that each and every Alzheimer's patient is different.  The disease has some standard pathways, but there is no real pattern as to how each person will progress or respond throughout their life.

I know that.  The other caregivers in my life know that.  The nice people Maria Shriver talks to on the Today Show know that.  How is it the people at my mom's rehab facility don't know that?

How can they show me the private therapy room designed specifically to work with memory care patients and then not use it?  How can they ask me a series of question and then not listen to me?  How can they see something positive and disregard it because there is no guarantee of it happening again?

I could scream.  I don't, but I could.

Instead - I spend hours and hours at the rehab facility sitting with mom.  Going to her therapy sessions.  Encouraging (making) her stand up and sit down and take a few steps and put on her own shoes and pick up her own coffee mug. 
I've seen the bills for rehab and I've seen my bank account as a caregiver and I find it unacceptable that I am doing the lion share of the encouraging and motivating and pushing for mom's recovery.

And I am frustrated. 

I believe this post can officially be called venting or a rant, but man, it feels good to get that off my chest! 

For the record, today, I am spending the morning at home.  With my dog and my computer and a banana berry smoothie and my shoes off!!!  I still have giant bags under my eyes, but it's a step in the right direction. 

Wednesday, May 7, 2014

Keep Calm and Caregiver On

We've all seen it - Keep Calm and Carry On.  It's simple.  It's eye-catching and it's great advice.  I read somewhere that they were of British origin and went in search of the history of this simple poster and found it fascinating.  You can read it here:  History of the Keep Calm posters

I suppose I was drawn to them because I am not naturally calm.  I don't fly into fits of rage or tantrums.  But, I am high strung in many ways and obsessive in many others.  The opposite of calm.

So, although I am not naturally calm - I have to really focus into it - I understand the benefits of calm.

Especially these days.  My love of everything in it's place totally works with mom, even in the deepest depths of her Alzheimer's.  My love of everything happening as planned does NOT!

That's where calm comes in.  When I try and push mom to do anything - get ready for a doctor's appointment, be quiet so I can hear someone on the phone or get her to eat a vegetable - she pushes back.  And usually with Alzheimer's "logic" that is not logical.

She will quote conversations that never happened.  She will begin discussions on why she doesn't have to do whatever needs done based on appointments she doesn't have and places she hasn't been.  She will look at her green beans (all 7 of them) and tell me she already ate a helping and doesn't understand why she was given seconds.  ("the staff here is terrible")

It's full-on frustrating.

BUT, if I want to accomplish anything with mom, I must remain calm.  A calm caregiver helps create a calm mom.  She likes a fight.  She loves to win.  Calm throws her off her game. 

Deep down inside, mom knows me - maybe not my name or that I'm her daughter - but she KNOWS me and knows that I am not naturally calm.  So if I can maintain a calm demeanor, that part of her brain that still "knows" me assumes there is nothing out of the norm and makes her less agitated.  Less likely to fight.  More likely to get ready for the doctor or walk down the hallway to lunch or eat that green bean.

I have to use all my techniques to Keep Calm - yoga breathing, prayer, counting to 10, grinding my teeth, sneaking a bite of chocolate.  But it's worth it.  I accomplish more when I can remain calm.  Mom is less stressed, and therefore less confused when I remain calm. 

I guess if you can't beat 'em, join 'em!