Lost

Today when I called my dad on the way home from work he said "I feel like I've lost your mother."  There are no good days now.  She is convinced that we are all betraying her and conspiring to have her "sent away".  

We have run out of options.  No doctors will talk with us because she is 81 and in a nursing home.  

This is so hard.

Routine

No real news to report today...everything is starting to become routine...Dad going to see mom at 1:00 sharp every afternoon...he tries relentlessly to get her to open her eyes...standing there begging her to "wake up"...she is laying there hallucinating and, in an effort to not see the hallucinations, she lays there with her eyes closed.  She probably doesn't know what to believe...is it really Bob or another hallucination...some scary evil monster there to tell her frightening things?

Dad gives up after an hour and quietly leaves her room and drives back home where he watches the History Channel and waits until it's time to feed the cats...his best friends and constant companions.

I, too, now have a routine...on the way to work a quick call to check in with Dad...to make sure everything is okay...hopefully, a call at 1:00 from Dad for me to talk with mom, if she is able...then a call to dad on the drive home from work to once again check in and make sure everything is okay.

I think the routine we are settling into somehow brings us comfort...to know we're still here...still a family...even though we are quickly slipping away.

Home

Bob
October 15, 2010

So, on  Thursday, my dad closed the sale of the home he and my mom shared for 58 years.  It was a modest, tiny little house...less than 1000 square feet...it was always cluttered and messy.  But it was home.  For years I focused on how much I hated that place.  But it has hit me hard to no longer have it as my home.

Oh, we have dad's new house.  It's a cute little house in the neighborhood he grew up in.  It's not "home" in my mind, though..."home" for me was always where mom and dad were.  My mom is now in a nursing home, slowly losing her mind.  They aren't together and never will be again.  So, there really isn't a home for us anymore.

When I think back over the past year and how much we have gone through as a family...that awful night my mother in her impaired thinking downed a handful of meds, literally not aware of what she was doing...for all she knew, she was making breakfast or taking a bath...how my dad caught her in the nick of time and rushed her to the emergency room...how she fought him...hit him, railed at him with anger...how he, all by himself, struggled to know what to do.  With his sheer strength he willed her into the car and got her to the hospital as her heart began to react to the awful cocktail of meds and she was rushed into Cardiac ICU...little did any of us know that would be the last time they would be home...mom never made it back home.  And, dad, realizing the reality of the situation, succumbed to my pleas for him to move closer into town.

I am very thankful at how quickly we sold the house.  It was much quicker than I ever imagined.  But I guess I just wasn't ready to say goodbye...I am just not ready for us to be at this phase of our lives.  If only I had some control in rolling back the clock and slowing down time...but I don't.

I just hope that I can somehow learn to handle this with the grace and class that my dad has shown throughout this painful experience.  I'm not there yet...but I'm continuing to try.

Visions?

Even if this is nothing more than a load of crap, I surely hope it's true.  Greeting the dying

The next phase of Bob & Jo Ann's life

Jo Ann in the summer of 1952

I haven't really updated much about my mother lately.  I've been trying to process it all.  My mom has been coming in and out of what the doctor's call a catatonic state.  Her condition is not quite as bad as it was a year ago, but...it's still bad.  When she is lucid, she has severe hallucinations.  What is so heartbreaking for me is that mom's hallucinations reflect the low self-esteem she has had her entire life.  She hears voices of people talking about her, she is convinced that my dad wants nothing to do with her, that my sister and I are conspiring to have her locked away.  She sees things on the wall...sometimes scary monsters...but usually, it's written words...telling her that my dad is cheating on her, that she is no good, that "they" are going to kick her out of the nursing home.

The one reality that I have come to understand is that you cannot reason with someone in the throws of dementia.  You can really only listen and try to reassure that everything will be okay.  That she is safe and will be taken care of.  And, if she needs anything, we will move heaven and earth to make sure she has it.

After last week's "conversation" with her doctor,  he did indeed go to see her.  He did write orders for electroshock therapy (ECT).   This was very frustrating because we (my dad and I), wanted to talk with him first to understand if this really was the right thing for her.  She had ECT last fall and it did successfully bring her back to us for about 10 months.  But...her mental state has been in a rapid decline.  Plus, she is 81.  We have been so torn as to whether or not putting her through this again is the right thing to do.

The nursing home has been in conversation with the only hospital in the area that provides ECT.  It's an hour away, which is another consideration.  It would be incredibly difficult on my dad...he is hell bent that he must visit her every day.  But their visiting hours are strictly held from 6:00 PM - 7:00 PM.  Dad does not see well enough to drive after dark in a strange area.  That may seem like a lame reason to consider not doing this treatment but...we have to consider both of them.  Plus, there are no guarantees that this will have a positive impact on my mother's health or mental state.  When you add this to the other concerns about the overall effect versus the potential outcome, well, there are big questions as to what the right thing to do for mom actually is.  We were looking for her doctor to provide us some guidance...no such luck.

We have been waiting to hear back from the doctor that runs the unit my mother would be admitted into as to whether they will accept her for treatment.  They take a look at a myriad of blood tests, xrays, etc., because the treatment itself is very hard on the body.  I spoke with my dad tonight and he said, "I hope they don't accept her."  My response was, "Dad, you have the power of attorney.  If there's even one ounce of hesitation in your mind, we should not move forward with it.  I can call them and tell them we do not want this treatment for her."  He replied, "Do it."

Jo Ann in March 2010, before
she started to rapidly decline.

I was sitting in my car just about to go into the grocery store.  The finality of how my dad responded took my breath away.  Always before, there has been the search for the right doctor, the right medicine, the right hospital, the right treatment...but now, that's all over.  When my dad said those words, my mind fast-forwarded to the future...and I am just flat out sad and scared.  Deep down I know this is the right thing to do for my mother.  We are letting her go...and not trying to do some heroic measures that more than likely would not have helped her...possibly even do more harm than good.

Tonight I have realized that my mom is really gone...she's physically here but...it's just a shell.  I'm heart broken.

BJ

Saying goodbye

Saying goodbye to home.

Getting my mind off of my worries...

Whew...what a whirlwind the past few days have been.  I have a huge mishmash of emotions to get through...sadness of saying goodbye to the home I grew up in, watching my mother slip away due to the effects of dementia and the hurt of watching my dad go through it all.  I just can't write about it right now.  I took loads of photos that I want to share but I've got to sort through it in my crazy head.

I'm spending this weekend trying to just not think about it.  I've gone on an organizing tear...I've joined the "Kitchen Cure"...nothing makes me feel as though I've not been a total slug than cleaning something out...and, believe me, I was raised to be a pack rat so there's about 46 years worth of crap I need to clean out...so...

I'm starting with the kitchen...I'll post photos as I go through and, hopefully, work a miracle.  I hope you'll join me!  And...I will continue on with Bob & Jo Ann's story...I just need to deal with it myself right now.

All the best,
BJ

The long drive home...

This is what got me through the long drive to West Virginia tonight

Hurry up and wait...is okay by me!

Sunflowers from my garden

Just as I was ready to walk out the door to head to WV this morning, I received a call from my dad's Realtor.  Closing on my parent's house has been postponed until Friday.  So...I took today to just chill out...I've slept, read blogs, watched the rescue of the Chilean miners (which just blows me away, by the way) and just generally vegged out...and enjoyed every single minute of it.

I have such a hard time of relaxing without guilt.  I guess from my vantage point there just always seems to be so much to get done.  I feel incredibly guilty about doing nothing when the list of things to get done is crazy long.

But I think about those 33 miners...they all probably had long lists of to-dos...honey-do lists from their wives and family, personal goals they were working towards...and they were all put into perspective for over 2 months.  There are so many lessons to learn from this amazing, tragic and frightening event.

I'm amazed at the story of the "white butterfly".  It is incredibly to hear how they worked together to keep every single person alive...they created their own society, with everyone playing a critical role.  The guy that was the  medic, the man that became the spiritual leader, the guy that is the ULTIMATE Elvis fan and led them all in songs.  One of the things I'm most freaked out by is seeing how GREAT they all look coming out of that dark, dirty hole...I don't even want to think about what MY hair would look like after 60 days in a hole!  These guys are a true testament to the good in world.

I know I sometimes (most of the time) get bogged down in the stress and frustration that is going on with my family right now and my stalled career.  But...deep down I do know that their are good people in this world and we all can work together, united in the goal of the greater good.

You know, I think maybe I need to take more veggin' out days...I seem to view the world in a different light after a few hours of sleep and rest!

All the best,
BJ

Little cluttered mess of a house

Charlie the Cat napping in the sunlight on
Mom & Dad's bed in the old house

Today I will travel to the home I grew up in for the very last time.  My dad will sign the deed  and we will close the sale tomorrow.  I hated that house...less than 900 square feet.  Bob and Jo Ann lived in that house for over 58 years and raised 2 children.  It was small and cluttered...but...I will somehow miss it because it represents home to me.  


My dad hasn't lived there since I moved him to his new house in January.  But...it's home...it's where we had Christmas...birthdays...Sunday dinners...first days of school...it's where Bob and Jo Ann started their life together and lived it...life was hard but they were happy.  And it will be gone tomorrow.  Oh, there's a new, bigger house that my dad has moved into.  But...it's not home.  Mom's not there.  Memories aren't there.  


But, it's time to move on.  Move on to the next phase...I'm going to have a hard time saying goodbye to that little clutter mess of a house.  It wasn't just a house...it was our home.  God bless the people that are buying it.  I hope they are happy and prosper there.

I want to make this real...

The blessed phone call...

So...I finally heard from my mother's doctor.  He did not give me the opportunity to explain why I wanted him to call.  The phone rang, I answered "hello" and here's how the conversation went:

Me:  Hello

Dr. X:  This is Dr. X.

Me:  Doctor, thank you so much for calling.  We...

Dr. X:  (interrupts) Your mother has never accepted that she will forever be in a nursing home.  She is unhappy.  There is nothing I can do for her.

Me:  But Doctor, we're worried she is drifting back into a catatonic state.  She just lays there, rigid, with a fixed stare.  She cannot interact with us.  She cannot communicate at all.

Dr. X:  Oh.

Me:  We are wondering if she might need another round of Electroshock Therapy (ECT).

Dr. X:  Well, I guess I need to go see her...(NO FREAKIN' SHIT, SHERLOCK!)

Me:  Uhm, well, yes.  Plus, we need to think through this...is this the right thing to do for an 81 year old woman.  She is spiraling downward to a place where I'm afraid we'll never get her back.  The doctor that treated her last year said she would need periodic ECT to maintain her mental clarity.  But is it the right thing to do.

Dr. X:  I will visit her sometime this week. (hangs up the phone)

And there, ladies and gentlemen, is the American healthcare system at it's finest.  When you are elderly, we just put you in a nursing home where you are out of sight and out of mind.

Tomorrow I will tell you about my mother's first experience with ECT in 1955 after just giving birth....this was the first of many times my mother fell through the cracks.

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.

I've joined the Blog Guidebook!

I've just entered the Bob & Jo Ann Blog in the Blog Guidebook!  Launching a new blog is not easy...getting beloved readers is a lot of work.  Getting exposure is key.  So...I'm buying some advertising space and looking for this cool site to help me get the word out about Bob & Jo Ann!  Check it out at the link above!

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.