Restrained

My dad just called.  My mother is becoming violent almost constantly now.  She hits my dad and the staff with her fists and kicks them with her feet.  She may have to be restrained.  Today her doctor visited the nursing home.  They are running tests to rule out more infection in her body somewhere.  If there's no infection, that means her dementia is rapidly advancing.   If that's the case, we are requesting they medicate her.  She is so bad that we are afraid the nursing home will kick her out.  We have no where to take her and cannot take care of her ourselves.

Why does it have to come to this?

Scary Dreams

Yesterday when my dad visited my mom in the nursing home, he was somewhat relieved to see her a bit more lucid.  Oh, the hallucinations were still there but not quite as bad as in recent days.  The demons are ever present...just more under control yesterday.  Somehow she was able to keep them at bay.

We've finally figured out that mom refers to her hallucinations as "dreams"...

Bob:       Hi honey!  How are you feeling today?

Jo Ann:   I...I don't know honey...

Bob:      What's on your mind today?

Jo Ann:  Well...you know...I'm just tryin' to figure things out...I'm so confused...

Bob:       What are you trying to figure out?

Jo Ann:  Well, sometimes I dream and...I can't tell what's a dream and what's real.  I'm so scared.

I can think of nothing worse...being confined to a bed, unable to move and having evil, scary monsters paraded in front of you, telling you frightening things...yelling at you...threatening you...not being able to tell the scary monsters apart from reality.

Mother nature is a bitch.

"Pickaway"

Today I was in a meeting at work.  My cell phone kept ringing.  The first couple of times I didn't even look to see who was calling...just turned the ringer to vibrate.  After the 3rd call within 10 minutes, I finally had the God given sense to look to see who was calling me...what on earth could be so urgent?  How rude!  Didn't people realize I am busy?

It was my dad.

The nursing home called my mother's doctor yesterday once they saw the extreme mental decline, marked increase in confusion and severe hallucinations.  The doctor came to see her early this morning and quickly saw that something was wrong...bad wrong

He ordered a chest X-ray.  Comes to find out, my mother has pneumonia and was admitted to the hospital where she is getting oxygen and IV anitbiotics.  

The call from my dad made me so sad.  I could hear the panic in his voice.  He said, "It used to be that pneumonia meant the end.  Do you think it's still like that?"  Of course I responded with "NO"!  I explained that with today's advanced antibiotics and treatment, outcomes are nothing like they used to be for pneumonia.  But I could still hear the fear and worry in his voice and the thoughts I knew were going through his mind.

For some reason an old memory popped in my head today...it has nothing to do with being sick at all...not sure why I couldn't get this off my mind.  I remember at even the youngest age...probably 4 or 5, I always felt very protective of my mother and knew that she needed to be taken care of.  I honestly remember at 4 years old, trying to mother her.  Even back then, I looked at her as my child.  My parents never had much money...they were very frugal.  Growing up I never had everything I wanted, just everything I needed.  (Which, by the way, is exactly as it should have been and should be today, in my humble opinion.)  

Every summer I would get one pair of sandals and one pair of tennis shoes.  We would get them at PicWay Shoe Store or "Pickaway" as my mother would pronounce it.  I remember loving the smell inside the store...no, probably not leather...just vinyl with rubber soles or pleather or whatever the shoes were made of...but it smelled so good to me.  I can vividly remember one summer, before I was even old enough to be in school, we went on our annual trek to get new sandals.  I quickly picked out my favorite pair and my mother took me to the checkout counter.  I remember the worry...panic...that my mother didn't have enough money to pay for the shoes.  I can recall pulling her arm as we walked to the register and whispering, "Mommy, are you sure you have enough money to pay for this?"  I knew she never ever had much in the way of money.  I don't know why I had this fear as a child...she had never gone to pay for something without enough money...but I always wanted to spare her any embarrassment.  I worried so very much about her.

I'm still worried about beautiful Jo Ann and my true and faithful Bob.

Sunday was a bad day...

I cried while I was at Target today.  You know, I'm really focused on making sure the things I share in this diary are not all sad.  I do NOT want to be a constant Debbie Downer...but...there will be times when there's sad news.  Sunday was one of those days...a bad day.

Oh the day started out fine...a normal Sunday morning...cleaning up around the house, some laundry, coffee while watching morning television in my pajamas.  I decided I would go into my office to try to "ease" myself back into work mode after being on vacation for 2 weeks.  I went in with promise of one little guilty pleasure as a reward...I stopped in Target to just walk around and treat myself to one little useless item...no idea what it would be but it was something to look forward to.

While I was in Target, my dad called me.  From the tone of his voice, I could tell that something was wrong.   He had gone to visit my mom in the nursing home.  As he walked by the nurse's station, one of my mother's nurses stopped him.  She shared that my mother was having a very bad day...she was having severe hallucinations.  Now, the interesting thing here is that we've been telling the nursing staff and my mother's doctor that she is having severe hallucinations for months.  They all deny that she is...I cannot tell you how frustrating this is...we see it, we experience it with her, we see the fear and absolute confused state that she is in EVERY DAY...but we cannot get the nursing home to agree that she is hallucinating.  She tells us she sees scary monsters and people coming into her room to yell at her...people telling her bad things about our family...things like my dad is cheating on her.  But...the staff and the doctor just do not see it and refuse to even evaluate her for this next phase of dementia.  So much for US healthcare.  My guess...and keep in mind this is just a guess...is that she is probably at Stage 6 of the 7 stages of dementia.

Today apparently was a day filled with non-stop hallucinations that were intense and frightening.  My dad couldn't really reach her.  Always before, my dad could calm her down...but she has advanced to a place where she simply cannot be reached.  When I think about what my mother is experiencing, it simply tears me up...to think of her being afraid and no way to calm her down is torture.  What must it be like?  You're laying there and see strange people, scary men threatening her if she opens her eyes or even talks to us.  Seeing things, hearing voices yelling at her...I can barely stand the thought of how she is suffering.  And, on top of it, to hear the overwhelming sadness and grief in my dad's voice scares me.  My dad has always had everything under control...always calm and methodical in his approach to fixing things.  But he can't fix this...neither can I...there's nothing we can do accept be there for her and pray that the demons she is battling will somehow let us comfort her.

This is all evolving so rapidly...I just want to roll back the hands of time and have one more Christmas with us all together...the laughter...seeing my mom gush over every single gift regardless of what it was.  But I can't.   I think today, standing in the Housewares section of Target, I realized that we are heading into a terrifying phase with my mother...one that will not have a happy ending.  We are grieving the loss of my mother even though she is physically here.

I simply feel lost.

A conversation with Jo Ann

Yesterday my dad called me while visiting my mom...she was having a semi-lucid day without evidence of what seems to be her ever-present hallucinations.  Her voice sounded weak...that of an old woman...which is so hard for me to realize is what my mother is now.

We had a nice conversation and it almost felt like it was mom.  How was Christmas?  She understood why I couldn't be home due to the weather and actually preferred that I not put myself in harm's way.  How are my cats doing?  What about the one named Mazie Grace...could she see now?  (Mazie is blind.)  What about the two little ones I rescued back in the fall?  Had I found them homes yet?  Her memory was so amazing relative to how she has been in the past few weeks...out of all my cats she could remember one of their names and get so specific as to remember that she is blind...amazing.

It was so nice to have that conversation with mom...it really was a conversation this time...not some rambling jumble of conversational bits that made no sense...at least not until we got to the end of our phone call.  She had been fine and was clear as a bell...then she said "honey, you remember that man...the one that laughs so silly all the time?  He's in here all the time and knows your dad really well.  I don't think he has much sense.  Plus, he makes all of those weird faces...I think maybe there's something wrong with him.  He was talking to your dad and he really wants to get to know you better.  Now honey, you be careful...he says he wants to take you to dinner...he ain't quite right and I'm just not so sure about him, what with him laughin' and makin' them weird faces and all..."

I had no idea who she was talking about...my dad took the phone from her and explained that there was no weird man (thank goodness...I certainly do not want to be having dinner with a weirdo..).  My mother was hallucinating...and when my dad said the 'hallucinating' word, I could hear my mother protesting in the background..."I KNOW I heard him say that, honey...I am NOT hallucinating...he's the one that makes all of them weird faces...and talks all the time..."

We have come to the realization that the hallucinations are with her constantly...she just covers them up at times. My prayer is that they do not frighten her.

Bless her heart.

BJ

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.

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.

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.

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.