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Tag Archives: Mother

“Suzette” — I’ve finished Alzheimer’s Through My Mother’s Eyes. What a great service you have provided to caregivers, with this book. If you want a reviewer blurb, I offer this one:

As Suzette Brown notes in Alzheimer’s Through My Mother’s Eyes, ‘love doesn’t conquer all.’ As the book documents in diary-level detail, there are frustrations love cannot conquer when a caregiver is helping a loved one with the vicious and unrelenting disease of Alzheimer’s. Nevertheless, it was love that kept Suzette going, past exhaustion, past the repeated phone calls in which her mother asked the same questions and expressed the same demands repeatedly, past the second-guessing by well-meaning but clueless friends and relatives, past the shoddy ethics of some medical professionals who became involved. If you are a caregiver for someone whose mind is slowly eroding, Suzette’s  meticulous recounting of her own experience, including a great many “I wish I had known then what I know now” asides, will guide you on your way.

— William R. Henry, Jr., coauthor, The Crown of Life Society

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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

    

    

    

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

 

 

“Alzheimers Through My Mother’s Eyes” BOOK FEATURED

“Alzheimers Through My Mother’s Eyes” BOOK FEATURED

I am honored today, to have my book:  “Alzheimer’s: Through My Mother’s Eyes” FEATURED in our local newspaper, The Daily Press.

Thank you for featuring my book –

 

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

 

 

 

 

My book – “Alzheimer’s Through My Mother’s Eyes” review shared on “Women’s Work: Women’s Worth”….. thank you

http://paper.li/jlschuster827/1396499371/s/308b4ac0-c746-11e3-b71a-002590dd35df

 

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