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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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Can your Mother come live with you ?

     MOM could not live alone any more.  I was frantic.  My heart sank each time I visited her home.  I visited Mom as often as I could during the week and spent most of Saturdays helping her out, taking her shopping, out for coffee and muffins, etc.  I loved my time with her.

She had lost a tremendous amount of weight.  Her refrigerator held no sustenance in the realm of food items.  She was eating egg whites and applesauce. Her clothes, once crisp and clean, were stained, torn and unkempt.  The pieces of paper, notes, calendars, and writing pads strewed the den, kitchen counters, and stairway.  The front yard showed grass and weeds almost a foot tall.  Her living room floor displayed random pieces covering the surface of the carpet.  Mom had not washed her hair in a while.  I do not know how long it had been since she had showered. She was still operating a vehicle.  The house was quite dusty and in total disarray.  Used plates, utensils, cups and frying pans sat on the kitchen counter.  There were stains all over the kitchen floor.   I had to take a minute, excuse myself and go outside so Mom would not see my tears.  I did not want her taking on my emotional state.

When I got myself together, I went back into Mom’s home and offered to help her clean up.  I washed all the dirty dishes, cleaned up the kitchen floor, got the washer and dryer going, cleaned her bathrooms and then took her out to get a decent meal – which she devoured.

I got ready to straighten up her belongings on the living room floor,  but she said she had a “system” and didn’t want me touching her items.  To her, these items belonged on the floor just as she had placed them.  She mentally fought to organize a house that used to come second nature to her.  I could see the agony on her face and watched her struggle to try to keep her independence.  It was heartbreaking to witness.  I hugged her and told her it would all be good !   After giving her many a cheery word – and upbeat nuances – I continued to pick up and do what I could in her home. 

Help was in the near future, thank goodness.  I had a difficult time leaving Mom to go home – knowing she was barely making it in that big house without her husband to take care of and guide her.  I offered to bring her to our home for a couple of days, but she refused to leave.  I look back now and can honestly understand her hesitance to leave her home.  In Mom’s mind, if she left her home – even to come stay with us for a couple of days – she may never be back in her home.  This was her home.  These were her belongings, her memories, her safety net.  She did not want to leave.

This vile disease, Alzheimer’s had my Mother in it’s clutches.  It was not letting go nor giving her a break.  Her decline was rapid and devastating after her husband passed.  She had no one to look out for her any longer—no one to protect her…..Dad was gone.

Many were expressing grave concern for Mom’s behavior. The credit union was beside itself trying to protect Mom and her interests.  She would visit the credit union up to 6 times per day, never remembering the previous visits.  She would go into her safe deposit box each time.  Mom was phoning the doctor’s office equally as many times daily until her dedicated doctor called me at home.  Her insurance agent for both home and vehicle were contacting me, telling me to get Mom OFF THE ROAD.  Adult Protective Services had been contacted.  The caller surmised Mom’s situation and a required follow up by Virginia state law ensued.   Friends were calling asking if my Mother was OK?   The wheels started turning.  Mom’s plight could no longer be ignored.

Mom’s doctor’s words hit hard.  But they were true.  Your “Mom should not be living alone anymore”.  He immediately scheduled a series of tests for Mom – to be given by a licensed experienced, Neuropsychologist at our local hospital. Mom’s elder attorney was expressing grave concern as well as her role in Mom’s life was beginning.  She worked together with Mom’s doctor, APS officer, and Neuropsychologist. The goal was for all concerned was MOM and her safety.

Many of her friends were concerned sure–but most felt she was “fine” and just missing her husband.  One friend that our families had known for years suggested I move in with Mom on a full-time basis.  Simply quit my job, leave my family, desert my life – to her it was a simple solution.  Mom needed me full-time.  I could cook her (Mom’s) meals, drive her to appointments, the grocery store – errands – the bank – also, I could ensure that Mom bathed, washed her hair, had clean clothes, clean house, spruced up yard, etc.  I asked her where my husband and son fit into this picture?  What about my job?  Who would pay my salary?  Was she going to contribute to our mortgage payment every month?  What about my life?  My responsibilities to my own family?  Needless to say that was our final phone conversation.  

Mom’s doctor contacted me.  His question – “Can your Mother come live with you” – so she will not be alone?  was answered swiftly and without a second thought from me was ….. “NO”.  I knew I could not take the responsibility of Mom 24/7 in our home.  My husband worked fulltime, I worked fulltime for a school system.  I had a teenage son in high school that included a busy weekend schedule of athletics.  Being Mom’s caregiver now was overwhelming, I could not even begin to fathom the additional strain on her as well as my family if she were in our home.  She would be in a unfamiliar environment compared to her own home.  As her designated caregiver and DPOA, every minute available in my time slot now, already, went to Mom’s care.  How could I take on more?  My blood pressure was already high and stress most days, was more than I could humanly tolerate.  If Mom had moved in with us, I would have ended up with a nervous breakdown.

Knowing that Mom would be alone in our home during the day opened up many possibilities.  What if she decided to cook something to eat?  There was the chance of our house going up in flames.  What if she accidentally let my two dogs out?  One of them was a 130# German Shepherd.  The worst thought was of Mom walking down the street looking for me or for her husband.  What is she got lost?  What is she had been accosted?  Oh my – so many scenarios to take into account.

The only way it would have worked for all of us, would have been for me to quit my job with the school system and stay home with Mom all day.  Financially however, was impossible.  My income was necessary for our household.  Me quitting my job was not even considered as a viable option. 

The outcome for Mom was very positive.  She was in the position to be placed into an Assisted Living Facility.  Within a few days, she had forgotten about her home and melded into the ALF environment and other lovely ladies of the facility.

Thank goodness.  Mom was now supervised by medical professionals, she was well fed, treated with respect and dignity,  Most importantly, Mom was now safe.

Suzette