Waiting...

Just sitting here waiting...waiting incessantly for my mother's doctor to call me back.  The nursing home tried relentlessly over the weekend to page him.  He did not respond.  America's health care system at it's finest.  Once again my mother is falling through the cracks. 

A letter for mom

Dear Mom,
I'm just so sad...even though you've been gone from us for years due to dementia and our criminal healthcare system, watching you slip away forever makes my heart feel as though it is swollen and ready to burst.  You have been through so much.   Why do you have to go through this now?

I think back to when I was a little girl...you were my world.  It amazes me how you never once turned me down on the request to go outside to play.  For some reason the memory of our playing kickball popped up in my mind...there were probably a hundred other things you could have been doing but every evening after dinner, you would go outside with me and we would play.

I was never athletic but it was during those play sessions that I could be.  It was safe for me to try and you always made me feel as though I was so good at that silly game.

Mom, I'm so sorry for how hard life has been for you.  And, I'm so sorry for the pain you are going through now.

I love you,
BJ

Slipping away

Today it became very evident that my mother is slowly but surely slipping even further away from us.  She has been almost completely unreachable for the entire week...almost unresponsive.  I'm trying to reach her doctor but haven't been able to get him to call me back.

I hear the sense of loss in my dad's voice.  He's watching his best friend disappear.  I feel the dread creeping into my heart...the dread of knowing she is going back into a catatonic state.  I wish we could understand it.  She is frozen...a fixed stare with her mouth wide open...unable to speak, unable to move...yet she hears everything, understands everything...she's simply frozen...cannot communicate out but takes everything in.

Life is just flat out cruel.

Received a call from my dad last night that the nursing home my mother is in is currently having a bad outbreak of an upper respiratory infection.  My mom came down with it on Sunday and is pretty sick.  She is frightened by all of the staff coming in and out of the room with masks and gloves on.  Her paranoia is in overdrive and she is afraid.

How is it possible that we are at this place in my parent's lives...I want to shout...scream...MY MOM IS IN A NURSING HOME, GODDAMN IT!  Please let us wake up from this.  There are worse things in life.  But...her life has been so hard.  So has my dad's.  Why do her last days have to be so difficult.  It is so sad to think of her being afraid.  We cannot reason with her...my prayer is that she will be given some peace...please, dear God, give my mother and dad both peace.

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No call today

Today is a dark and chilly fall day.  Rain coming in soon.  It's so quiet in my house I swear I can hear my cats purring upstairs while I'm downstairs in the dining room.  I feel like I'm in a fog...every day my dad calls me when he gets to the nursing home and I get a chance to talk with my mom.  It's the same conversation every single time. 

Dad:  BJ, here's mom.

Mom:  Hi Honey.  Are you at your work?

Me:  Yes, mom.  How are you feeling today?

Mom:  Oh, I'm okay.  Except for that awful writing on the wall...I read on the wall that they are going to kick me out of here.  I don't know where I'll be when you come in again, honey.  Why won't they let me go home?  I just want to go home so bad...please, honey, just go to tell them that it's time for me to go home, okay?

Me:  Now mom, nobody is going to kick you out of there.  You are safe.  We would love more than anything to have you go home but, Mom, we can't take care of you without help.

Mom:  Uh huh.  How are your kitties?

Me:  They are all fine, mom.

Mom:  Okay, honey, I don't want to keep you away from your job.  I'll give you back to daddy.

Me:  Okay, mom.  I love you.

Mom:  I love you, too.

Dad:  Okay, we'll talk later this evening.

Me:  Take care of yourself, daddy.

Dad:  Right.  Bye.

Those calls only come on days when she's at least somewhat clear and lucid.  Her hallucinations are getting progressively worse...again.  Sometimes they frighten her.  And, the hallucinations come on semi-lucid days.  I hate to think what she goes through on the bad days...the days when we just flat out can't reach her. 

There was no call today.  I guess it was a bad day.

Bob & Jo Ann's Story

And so, life was good for Bob & Jo Ann.  They both worked in the grocery store and in 1955, they had their first baby.  My sister was born in the spring.  It was in this point of their journey together that life changed...changed drastically.  After child birth, Jo Ann experienced the first of many severe depressive episodes...not simply postpartum depression...I'm talking serious, unable to communicate depression. She could not take care of the baby.  She was unable to get up and get dressed in the morning.  She could not bathe or feed herself.  She simply sat...and stared out of the window.

Back in 1955, there were none of the advanced medications we have today available.  There was one simple treatment for those who were "crazy"...Electroconvulsive Therapy (ECT)...you may know it as shock treatments.  It was crude back then...electrodes were (and still are) place on the patient's head and seizures are electrically induced patients for therapeutic effect.  Today, patients are given a mild sedative.  But, back in 1955, no sedatives were given.  

Jo Ann was sent to Radford University for shock treatment shortly after childbirth.  She was there for at least a month...she dropped down to 80 lbs.  Bob was left to fend for himself with a new born.  His family took the baby while he was with Jo Ann.  These were dark dark days.  

Jo Ann was brought back home and after many many months, she began to heal and regain a certain part of her life.  This was the first of many episodes like this.  Over the course of her life she was hospitalized in psych wards numerous times.  The next episode occurred right after I was born in 1964.  And then again in 1976...and...the list goes on.  The telltale signs were very clear...eventually.  It would begin with her being unable to focus, having difficulty getting things done.  And, then, it would evolve to her not being able to bathe, dress, feed herself, let alone take care of the house and our family.  Many times I as a child did all of those of things for my mom.  I remember in the 6th grade suddenly realizing that I was the mom.  I would bathe/dress/feed her and then do the laundry, mow the grass and have dinner ready for my dad when he got home from work.  Life was hard.

Bob stood by her every step of the way...never once waivering.  In the mid-'90s she was diagnosed with Parkinson's Disease and was put on massive amounts of medications.  The problem is that, well, she was actually MISDIAGNOSED and NEVER had Parkinson's.  In very simple terms, the Parkinson's medication on top of all the heavy-duty psychiatric meds simply fried her brain.  Bless her heart.

I guess she was declining far more rapid than I realized.  My dad was good at shielding that sort of thing from my sister and I.  He devoted his entire life to caring for her, but the last 15 years he truly became her sole caregiver. I think in all honesty, he was in denial of how far she had declined.  

At 1:00 AM on July 14, 2009, my dad called me...I sleep as though I am dead so, even though the phone was right next to my bed,  I did not hear it ring.  He called me again at 3:00 AM...yep, I didn't hear it.  he called again at 4:00 AM...5:00 AM and then finally at 7:00 AM.  I was getting dressed for work at that point.  When he called the last time, he got me and explained that he had taken my mother to the emergency room the evening before.  That she had been mentally terribly confused for the past week...just like she had been many times before.  That he had discovered that she had gotten into her medicines and taken a large handful of pills.  We know it was not an effort to commit suicide.  For all she knew, she was out picking flowers in the flower garden...she had no awareness of what she was doing.

All of the meds had caused her heart to become unstable so she had been put in Cardiac Intensive Care. This was the beginning of the end.  From there she was moved to a long term care facility where she is today.  

At this point in her life, she has advanced dementia.  Years of heavy duty meds have wrecked her body.  She mostly cannot walk.  The dementia brings severe hallucinations and extreme paranoia.  Bob visits her every day.  I live four hours away and travel in every-other-weekend.  
This blog is dedicated to telling Bob & Jo Ann's story and documenting our last days together as a family.