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Caregiving….slam that phone receiver against the wall….

     As I start on Book # 2 it allows me a second chance to heal and understand the depths of human endurance I achieved.

     I now know, that it was OK to feel like bashing the phone receiver into the wall after Mom’s 17th call of the night.  Now I REALLY understand the toll it takes physically on one’s body and spirit.  I did keep my sense of humor which I inherited from my Dad.  Many a day my humor – sick and twisted at times –  relieved the pounding in my chest and head.

     For a little over 5 years, my main concern was my Mother, her welfare and safety.  This included her mood swings, her rage, her frustration with not being able to remain independent.  Her confusion, knowing something was askew, but unable to mask or do anything about it.  She was scared and innocent.  She was frantic and panicked many a day as I drove to her home to comfort her.

     I can relate to all caregivers feelings, emotions, questions and pure adrenaline as the heart pumps faster from the stress bestowed by the brain.  The physical aspect alone, was unbearable.  My head pounded on many a day.  I knew my blood pressure was up – but was too scared to have it checked.  My neck and shoulders bore the strain of what seemed to be, the World.  All the while working full-time with my own family which included a 14 year old son. 

     That phone.  That Damn phone and its beckoning ring.  By the time I got home from work, I had a full-time evening “job” answering Mom’s phone calls.  The machine was full of messages as I walked in the back door of our home.  What do I do about my insurance?  When is my doctors appointment?  What day is it again that I come to your house for dinner?  I felt like walking to my bedroom, closing the door and hiding under the bed covers for the remainder of the night.

     Instead, I just stood in the middle of the kitchen as the tears fell.  What am I going to do? 

     This was not just today.  This was every night of the week.  Seven days seven nights.  Mom just walked around in her living room with hundreds of little pieces of paper in hopes of scavenging a semblance of organization.  I knew she didn’t remember the other 12 phone calls she made to me – but by 9:00 p.m. every night, I really didn’t care.

     I got nothing done in my own home.  My evenings were basically spent answering Mom’s never ending phone calls.  By 10:00 p.m. I told Mom to not call back, I was exhausted and going to bed.  Within 5 minutes, she was calling again, asking what I had just told her.  I then, didn’t answer the phone – my energy was depleted.  I could not function anymore, the only thing I wanted was sleep.  Sleep. Sleep.

     Then, Mom, at 10:00 p.m. — and the last time I answered the phone for the night…was indignant in expressing to me — that I needed to help her.  She was rude about it also.  Now I look back and it’s much easier to disseminate that it was the vicious disease, Alzheimer’s speaking….not my Mother.

     Did that make it any easier?  Any less stressful?   No.

Suzette

    

    

    

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MOM, stop screaming at me….please

     OMGOSH – MOM I’m going to hang up the phone if you don’t stop screaming at me.  Please stop.

How I remember those words – day after day.  I was all worked up, upset and on the verge of tears….. seems like every conversation we had.  I was clueless, frustrated and did not know what to do.  My Mother was never like this.  She was kind and loving.  What has happened to her?   Alzheimer’s was the answer.  It was the disease speaking, not my Mother.

I tried to help her each and every phone call, each unannounced visit to our home….but I could not placate her.  She asked about her money, her accounts, her car accidents, doctor’s appointments, statements she received, phone calls she received…none of which I could answer.  I tried, God knows I tried.  But that was impossible, nothing worked.  Was it me?  Why was she screaming at me?  I was her caregiver, but also human and unable to tolerate being screamed at.  I had my limits as well.   

Our phone starting ringing while we were at work.  By the time we got home – there were at least 15 missed phone calls, all from Mom.  I took a deep breath and sighed.  The worst was yet to come.  The phone’s shrill sound grew to be a noise that I dreaded hearing.  I could feel my muscles tense up, my jaw locked and my blood pressure soared.   I kept repeating to myself in a whisper –please please don’t call…please give me a break.  To no avail-and honestly I knew the nightly routine.

Mom was still living alone in her home after the passing of my Dad.  She was afraid, vulnerable and confused.  She would soon be in Assisted Living where she would be SAFE.  By now, her elder attorney had become involved and was a tremendous help to me.  Department of Social Services, Adult Care Division had visited Mom and filed their report, her doctor had now declared with certainty that Mom was unable “to live alone anymore” and my DPOA was about to go into effect.  Mom had been tested by a Neuropsychologist at a local hospital and the results of these tests were clear – Alzheimer’s Disease – so the process had begun.  She presented a danger to herself living alone.

I did not however, yet have her DPOA and I was still unable to legally help her with her banking, bills, financial issues, etc.  I tried to explain this to Mom – but she was unable to comprehend it.  By now, Mom had gotten into several small car accidents, she visited the credit union and banks up to 7 times a day, she called her doctor’s office non-stop daily, friends started worrying about her chronic and constant phone calls to them, relatives in other states called me asking about Mom and “what was wrong with her”, my household was stressed to the breaking point, the doctor was calling asking if Mom could come live with us – but help was on the way.  Mom obsessed about the phone calls and visits because she could NOT remember the previous phone calls or visits. She could not remember how to drive, the directions to our house that she had been visiting for 15 years….it was heartbreaking.  This was her disease speaking and taking control of her brain.  This malevolent nemesis called Alzheimer’s was robbing my Mother.

I felt better somehow after slamming the receiver against the wall or throwing the phone on the floor.  After answering the phone for the 12th time at night – Mom and I were emotionally spent.  I had nothing left to give her.  Her voice continued to rise during our conversations – and I admit, I had a very difficult time listening to her scream at me.  She screamed out of frustration and also to try and intimidate to get what she wanted.  The brain was able to try to “protect” itself and cover up shortcomings. 

I knew – that this was not my sweet Mother speaking.  My Mother was long gone.  She clung to her independence and fought using whatever method her brain dictated,  I tried relentlessly to change the subject.  Asking Mom, what she did that day?  Did she want to come over for dinner?  (I knew when she came to my home for dinner, she got a good meal in her).  Did she want to talk to her grandson? My husband? I let her know I was coming to visit in a day or so.  I made sure I kept my voice level and tried, tried hard to not get upset.  The more upset I got, the louder her voice got.  Sadly, it ended up being a screaming match – and I as her daughter should have known better. 

I can ascertain this of course NOW,  looking back 10 years ago……at the time, it was simply not that easy. Thank goodness for the resources, organizations, individuals and information available to caregivers these days. 

I am a survivor.  I learned all of this on my own.  In my book, I list many valuable resources and organizations available to caregivers and families.  I state emphatically what I “should” have done, and what I “could” have done years ago.  My feelings and coping mechanisms  were lacking in many respects – but I loved my Mother and was fiercely protective of her.  She deserved my respect my love and my full attention.  She was treated with dignity and respect by all involved.

That is what I gave her.  I would do it all again for Mom.

SUZ