By Suzette Brown
This is the first time I’ve written to share my exhaustion and frustration during the five years I took care of my mother, as her dedicated caregiver. A big part of the reason is because 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? 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. And one of the things I learned from my caregiving experience is that caregivers must be supported in the workplace.
I began caring for my mom soon after my dad passed in April of 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 and my bosses I worked with at that time were wonderful, understanding and very supportive of me. I missed all of them tremendously when we moved to Hampton in June the next year so that my husband could be closer to his job. 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.
After my dad passed away, we decided to sell my parents’ home and move Mom into an assisted living facility. The money we received from selling the house went into Mom’s 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 assisted living facility. I hated leaving the 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 applied for positions in the school system in Hampton and was elated to be hired by them in October of 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 pension.
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 the 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 assisted living facility, 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.
I grew quite resentful of the constant questions and grilling regarding my personal business that involved the care of my mother. I realized through my experience that what caregivers need most is a working environment that bends to allow employees breathing room if you’re 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 unpaid time off when I needed to take care of my mother’s personal business.
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 doctors and dentists apppointments and elder attorney meetings. 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.
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, and muscles that were so tight in my neck and shoulders I could hardly stand it. I needed breathing room – I needed a kind word – a hug – none of which I received. I needed my paycheck and it was cut short many occasions due to taking care of Mom.
I was caught between a rock and a hard place. My job was to allow my mother as much independence as possible and maintain her dignity at all times, and I also had to work full-time. We weren’t financially able to allow me to quit work to spend 24/7 as Mom’s caregiver.
In 2003, I could no longer manage both, and I switched professions, to one that would allow me to balance my role as caregiver with my duties in the workplace.
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. Please don’t make it anymore difficult for the caregiver.
Paid leave would allow caregivers like myself to take time off to care for loved ones. While we need paid leave policies, we also need a cultural shift so that workplaces understand caregivers must be supported.
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 five years of loving and appreciating the woman who gave birth to me.
I miss you Mom….