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
"Alzheimer's: Through My Mothers Eyes" 