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Caregiving and working fulltime – 2 jobs….

Through the five years I took care of my mother, as her dedicated caregiver, this will be the first blog I write to share my exhaustion and frustration – since I also worked full-time with a family of my own.

I can honestly look back at those years now and wonder how on Earth did I ever do it?  How did I work full-time for a school system? (We) Raise a 14 year old son?  Take care of our home, chores, family and myself?  Have conversations and hugs with my husband and best friend?  Mom always took first fiddle.  Everything else was brushed aside.

When my Dad passed in April, 1999 I was employed full-time with the school system in Gloucester County. The job location was a good 20 miles from my home. My mother lived in adjoining York County to the south of Gloucester and her home was approximately 15 miles from my home. Many a day after work, my presence was needed by Mom. Needless to say, it was a great deal of back and forth driving after a long day at work.

The employees (my bosses) I worked with were wonderful, understanding and very supportive of me. I missed all of them tremendously when we moved to Hampton in June, 2000 a little over a year after the death of my Dad. My husband commuted back and forth from his job in Newport News/Hampton to Gloucester now, for over 14 years. It was time to move closer, so his long days would be shortened. For over a year – my caregiving duties were made much easier by understanding and sympathetic bosses. I will always be grateful to them for this time. I still have the plague that was given to me stating: “A Wild, Wacky, Wonderful Woman Works Here”. I miss them all dearly.

We were in the process of selling Mom’s home….in addition to selling our home in Gloucester and buying a home in Hampton. Mom’s house required minor repairs, work needed to be done in her yard, her roof, the floors, etc. That was a very rough month. But, I finally got Mom into an assisted living facility in Newport News and as her DPOA – repaired, painted, fixed up and sold her home. This money went into her account and was used for “self pay” to the assisted living facility.

We were also now settled in our new home in Hampton and Mom was settled in at the ALF. I hated leaving Gloucester School System, but due to the round trip drive of approximately 47 miles each day, I had no choice. I would miss my co-workers more than I ever dreamed of…. particularly when I found employment with the school system in Hampton.

Aiming my future was an important factor in finding employment once we re-located to Hampton. I had over 15 years with Gloucester Schools – and I really enjoying the field of education. I pursued the school system in Hampton and was elated to be hired by them in October, 2001! I was so very excited. My Virginia State Retirement would continue and the years ahead of me would allow me to retire and receive a VSR pension. (Virginia State Retirement). Most of my sick leave and vacation leave was gone, (some could be carried over from other school systems) – most of it had been used up for Mom’s care. Her doctors appointments, IEP meetings at the ALF, etc.

It became apparent fairly quickly that this particular job would not permit me to leave to simply “take care of my mother” as readily as the school system in Gloucester. Co-workers were nowhere near as understanding as my co-workers in Gloucester, nor were they supportive of my plight and situation as a caregiver. I was guidance secretary and it was a demanding position. Many disagreements ensued due to the fact that I was Mom’s caregiver. I received phone calls at work from physicians, the ALF, mom’s friends, my family, banks, credit unions and concerned individuals. Even though Mom was in an ALF, there were phone calls and requests for her care that simply had to be taken care of. Many instances could and would not wait until I got off at 4:00 p.m. causing me to insist on leaving. I could feel the resentment from certain personnel – and it escalated to the point where my phone calls were screened. I started being asked if I was on a “personal or work related call” and “who was I speaking to”. Then I was informed that my personal calls were not allowed at work, even after I explained that they were regarding my mother.

My desk was in an open area in the department. Three guidance offices were beside my desk, equipped with doors that could be closed allowing them privacy. I had no privacy. All my phone calls could be heard by anyone walking by headed to the main office, students or teachers sitting in guidance waiting for an appointment, a parent that stood by my desk until I acknowledged them (many were rude as they could see me on the phone) – it was a hopeless situation indeed.

I grew quite resentful of the constant questions and grilling regarding my personal business that involved the care of my mother. What CAREGIVERS need most is a working environment that bends to allow employees breathing room for caregivers taking care of a parent or loved one. I didn’t expect sympathy, extra pay, hours upon hours of free time off, being able to talk on the phone all day or a “free ride” at work…. I did hope for a small amount of understanding, allowing me time off when needed, with NO pay in order to take care of my Mother’s personal business.

Caregivers should NOT be singled out and micromanaged by management on a daily basis. They should not be ridiculed for their time on the phone, time off without pay, needing to leave right away due to an emergency, or appointments that require a caregivers presence. Caregivers should not have to go into detail regarding their loved one’s medical needs, it should suffice when a caregiver explains that they are the designated DPOA and caregiver of a loved one/family member – that may require time off work. If necessary, provide the employer a doctor’s note explaining in minute detail that the caregiver will and does need time off due to circumstances out of their control. I would have been more than happy to supply this documentation had I been asked.

It was stressful enough being Mom’s caregiver. The added frustration of being quizzed at work, merely added to the level of rage, anger, angst and stress. Some days, it was more than I could handle. I tried to make meetings after 4:00 p.m. as often as possible, including; doctor-dentist-elder attorney-meetings, etc. Many times these hours did not work for the other parties, so I had no choice but to take off work, with no pay.

I didn’t want to explain my Mom’s condition to any of my bosses at work. I honestly felt it was none of their business. Mom’s privacy and dignity were two things I vowed to keep sacred, for her. I explained to the bosses the bare minimum, simply letting them know that my Mother had been diagnosed with Alzheimer’s by medical professionals, that I was her DPOA and caregiver. I let them know that at least now she was in an ALF, safe and taken care of, but from time to time certain episodes occurred that called for me to leave and be by Mom’s side.

My needs were simple…to please allow me to simply take time off without pay when I needed to leave and be by my mother’s side. I didn’t expect any special favors. There were many issues that could not be dealt with after 4:00 p.m. as my employer continued to let me know that I was needed at my DESK. Homework was picked up after school and it was my responsibility to have it ready for parent’s to pick up, the phone continued to ring after school was out, teacher’s would come in and want schedules–copies of records-changes made in the computer on a student screen, there were papers to file in student folders – I could go on and on.

Caregivers need to be trusted – encouraged and supported. I do know this does not happen with many other employers as in my case. My stress level grew to the point that I thought I may have to be out of work for a couple of weeks due to my high blood pressure, pounding head, muscles so tight in my neck and shoulders I could hardly stand it–of course it would be without pay. Being micromanaged by my bosses accomplished nothing – and simply made me angrier and more uptight. I needed breathing room – I needed a kind word – a hug – none of which I received. My mother’s personal medical history was none of their business. What happened at the assisted living facility was also none of their business. They needed to trust me knowing I did not want to leave work again, without pay. I needed my paycheck and it was cut short many occasions due to taking care of Mom and her dilemmas, it had to be done.

I was my mother’s voice. I was her protector, her daughter, her safety net, and her DPOA. My job was to allow my mother as much independence as possible and maintain her dignity at all times. I had to work fulltime. We weren’t financially able to allow me to quit work to spend 24/7 as Mom’s caregiver. Give me a break at work, get off my butt, give me space. My responsibility as Mom’s caregiver was difficult enough, I did not need the additional pressure of micromanagement at work.

In 2003, I could no longer contain my distain of the “control” that was exerted on me. I took the Para-Pro test issued by the State of Virginia, passed it with flying colors, and became an Instructional Assistant in the classroom. I was no longer confined behind a desk all day long, with each and every phone call being micromanaged. I thoroughly enjoyed working with the teacher’s as their assistant in the classroom. Much less stress, and no longer sitting all day in an office chair. I could actually make a phone call concerning my Mom’s affairs in the teacher’s lounge, allowing me privacy, finally. The teacher’s all liked me, and we all worked well together. No more micromanagement. I loved it !

Employers, please – I implore you – have some understanding and human forgiveness for those caregivers that on occasion may need time off from work to care for an ailing loved one. If you have not been in this position yourself, the stress is unbelievable for the caregiver and leaves a permanent scar on their shattered spirit. Please don’t make it anymore difficult for the caregiver, who will not expect special favors from your company, for a meeting they have to attend, their loved one has been admitted to the hospital, a doctor’s appointment is coming up, or a crises arises that simply has to be dealt with.

My body and my spirit buckled under the strain.  My mind caused physical illness as it fought for sleep, relaxation and freedom from frustration.  My spirit crumbled on more than one occasion and caused guilt on my part for not being the perfect caregiver for my mother.  I shed tears out of everyone’s sight when I got home, and snuggled on our bed in the fetal position…hoping for some sort of break – a break that would never come.  It was an intense five years, but also 5 years of loving and appreciating the woman who gave birth to me.

I miss you Mom….

SUZ

Support and encourage Caregivers…..or become one.

CAREGIVING  is not a one person job – but it can be for those of us who virtually have no support.

When my mother needed to be assigned a Durable Power of Attorney for all her future needs, the duty fell on me as the daughter who lived locally.  Don’t get me wrong, I was proud and honored to “speak” for my Mother, but little did I know what I was in for.  As a mother of a teenage son, a fulltime employee for a school system and a husband who also worked fulltime and long hours – my time allotted for family was treasured on the weekends and whenever the three of us could get away for a break.

Taking over as my Mother’s DPOA, smashed any weekend plans we made, peaceful evenings, and time spent together.  The job was fulltime in itself – just in Mom’s demands alone.  Her incessant – constant phone calls nightly drove me to the point of almost slamming the phone against the wall hoping to leave a big hole and wall stuffing on the floor.  We had to get caller ID, we had no choice.  By the 16th phone call of the night, I stopped answering.  For my sanity, I had to.

Now of course I know that this IS what it really takes to be a an effective, honest and reliable DPOA.  Supporting my mother, caring for her, and standing up for her independence and dignity.

What a fool I was – being naïve enough to care what other’s thought.   How their words sliced through me like a sharp implement.  Insinuations that I was out to get Mom’s money and belongings.  The question WHY? do you take away her independence?  You already moved her out of her home !  You sold her house and put all her belongings in storage.  All her money is gone and why are you on the account with her?  Why can’t the “clan” all get along?  How do you know it is Alzheimer’s?  Mom sounds “fine” to me when I talk to her—my personal favorite.

She can still drive some argued – all you have to do is MAKE/DRAW a big black RIGHT arrow on a piece of paper and tape this sheet of paper to her steering wheel – that way, as she looks at the drawing of an arrow pointing to the right,  she can ONLY turn right on the one-way street when leaving the Assisted Living facility and she won’t turn LEFT into oncoming traffic.  How dare you take away her driving privileges…. that’s the last shred of independence she has.  What are you going to do with her car? Are you going to keep the money for the sale of her car?

Even after informing this genius that I would be held legally/morally responsible for ALL consequences-monetary and otherwise should Mom get into an accident, and God forbid injure, maim or kill someone….I could also lose my home if Mom accidentally killed an innocent person, it would be my cross to bear. If Mom had killed an innocent person while she was driving with the diagnoses of Alzheimer’s, the burden would be directed to me as her DPOA – having full knowledge of her diagnosis and still allowing her to drive.

I should not have allowed her to continue to drive. Mom was now medically diagnosed with “Alzheimer’s Disease”, documented in her medical history.  I have the car insurance guy begging me to get her off the road – a very concerned ALF administer – Mom’s PCP – Mom’s elder attorney and Adult Protective Services officer asking me why is your Mother still driving?  Why does she still have a car here at the ALF?  She has no need for one.

This genius that I mentioned – indicated on several occasions that they would love to have Mom at their home for a weekend or so – to give her a break.  I was very excited for Mom, to be able to share her confusion and actual decline with someone who insisted there was nothing wrong with her, or maintaining that Mom’s Alzheimer’s decline was not as serious as I was stating…..  It never panned out of course – but they insisted their intentions were good.  There was always a lame excuse.   Mom would have enjoyed getting out of her ALF room and spending valuable time with these family members.  In order to understand the severity of Mom’s decline, since our conversations were no longer effective and merely sufficed to make me feel like a complete failure  – a few days with Mom in their home – surely would have enlightened.

I had one family member goes as far as to outright inform me that maybe there wasn’t anything wrong with Mom – maybe it was me ….who had the problem.  Today, 10 years later, I would have no hesitation telling this family member to kiss where the sun doesn’t shine, followed by don’t contact me anymore.

The negative comments, insults and  suspicions all directed at me, did nothing to help my ailing Mother.  They only served to piss me off further and push me closer to wondering about my sanity.  Support?  I don’t think they knew the meaning of the word.  Finally after I simply couldn’t tolerate innuendoes any longer – I offered (2) separate family members complete control and take over of the DPOA.  This would relieve me in more ways than one – of Mom’s physical, mental, emotional and financial duties.  The (2) family geniuses surely could do a more apt job than they apparently thought I was doing.

I could be free of caregiving duties.  Spend more time with my own family, give my body and spirit at rest at last.  We could return to our calm lifestyle and enjoying long family weekends….with no phone calls from Mom.  No Mom showing up at the back door any time of day or night.  No more complaining relatives and friends. The exhausting trips to the ALF, shopping for Mom, and doing all her financial bills, paperwork, documentation late into the night would dispense. Being relieved of this huge responsibility by a complaining and annoying relative would have indeed been sweet.  I couldn’t wait.

I contacted each of them, who were both out of state (Virginia) I might add, and asked them to give me a convenient time in order for me to make an appointment with Mom’s elder attorney.  I would pay for the elder attorney visit – and ALL DPOA duties and responsibilities will be legally switched over to them.   The elder attorney would fill them in on the requirements, record keeping, filing, and all else the “job” of DPOA consisted of.  What a great idea this is I told them.  Hopefully, even though I knew I did a great job – maybe they could do even better taking care of Mom on a fulltime not to mention daily, basis.  Of course, this will eliminate any more bitching and moaning on their part.

Excitement weaned as it grew obvious each had no inclination or desire to take over as DPOA.   It never happened of course.  I was Mom’s caregiver, guide, friend, daughter and DPOA until the day of her death.

Word to the family, friends, acquaintances, co-workers of a loved one diagnosed with Alzheimer’s disease – please – if you can’t support a caregiver who is already stressed to the point of barely being able to sustain their lives as it is – and then being overwrought with caregiver duties and responsibilities that weigh down the human heart and soul – then either leave them alone completely or keep your nasty, negative, destructive comments to yourself – and HELP them.

Caregivers need support, encouragement, guidance, solace and love.  A big hug and kind words every day goes a long way !

SUZ

Pet Therapy – honored to be a part of it….thank you RebelMouse !

https://www.rebelmouse.com/suzette/my-tdi-girl-flower-742194758.html?xrs=RebelMouse_fb

Flower – my sweet girl, “reading” my book, “Alzheimer’s Through My Mother’s Eyes”.

OK, Mom, I’m done reading. You can have your glasses back, it’s time for my nap.

“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

“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 –

 

My beautiful “Infographic”

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