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You can take over….anytime you choose

     I grew to despise the word…..FINE.  Starting out in the early stages of progressive Alzheimer’s with my Mother, I too, believed she was FINE.  After all, her husband of 44 years had passed and now she was alone.  Still, FINE was not a great word to describe her status, it was an OK word to use.

As the weeks turned into months however, her phone calls to me escalated and I could not see anything positive in the word FINE.  NO now, she was not FINE.  “Oh, your Mother is FINE”, she just misses your father.  She “is still grieving”.  “Leave her alone, she will be OK”.  DUH – if I had indeed left alone, she would never have made it alone being FINE.

The friends/family that used this word frequently did not partake in Mom’s care as closely and frequently as I did.  They did not go to her home 5 out of 7 days a week to check on her/bring her food/help her in her home,  they did not answer her 20 phone calls per night.  Mom did not show up at their backdoor frantic and panicked because she couldn’t get me on the phone.  They didn’t see the declining issues with cognitive impairment and memory (oops maybe they did) – let me reword that – they probably did notice it, but they didn’t have to DEAL with it as I did.  Her eating habits had caused her to lose weight, her once impeccable hygiene was lacking, the front yard had grass over a foot high, her physical appearance was deteriorating, her mood swings were now obvious (well I can speak for myself), and her short term memory had plummeted.

Mom was FINE?  I think not.

Then there are always the family members that want peace and tranquility for all. The Clan needs to stick together.  It sounded a little lopsided to me – but OK I tried.  But I have to refer back to the FINE word.  Now it is not even listed in my words used to describe Mom. 

I am stressed, frustrated beyond human endurance and all that is needed is tranquility and for us all to get along?  Meanwhile I continue taking care of Mom, my own family, working full-time 30 miles away and driving to Mom’s house to check on her at least 4 times per week.  I straighten up her home, I wash her clothes, I clean her bathroom—because I love her and it needed to be done. 

Then, I had a great idea.  I offered those who verbosely expressed that I needed to “leave Mom alone and get off her back” full care of Mom.  I told them we could drive to the elder attorney’s office and I would gladly switch my DPOA over to them !  Great idea, I thought.  Then, we will see if they still think Mom is FINE.  I can guarantee you, they wouldn’t have.

But to my disappointment, none accepted my offer!  But why not I asked?  You are more than happy to take over Mom’s care….full time care.  Judging by biting comments, I assumed they could and would be more competent than I was.

I even had one friend of my parent’s whose children I grew up – suggest (and she was serious) that I move IN with MOM on a full time basis.  Simply she said, quit your job, pack up and move in with your Mother.  She needs you.  This way I could take care of Mom’s hygiene, nutrition, errands, housework, appointments, and yard.  OK I said….one minor problem.  Are you going to pay my SALARY after I quit my job to move in with MOM?  This in turn helps make our mortgage payment.  Well….if you guessed her answer was no, you would be correct.

I asked her if she had F*#@ing lost her mind – ?  The sad thing is, she was serious.  She had done this with her Mother – but one huge difference, she had never worked outside the home.  We never spoke after that conversation.

Being scrutinized as caregiver was one of the hardest issues I had to deal with.  I received complaints and comments – but when I offered – no one else wanted to take over the responsibility.

You know what?  I will go to my grave knowing I did the best job humanly possible taking care of my Mother.  Loving her, protecting her, standing up for her rights, and treating her with the dignity and respect that she deserved.

I know she is watching me from above, and is very proud of me.

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