By: Lottie Wathen and Arlene Morris, Whitham Hebenstreit & Zubek LLP
I have memories of playing tag as a child with my friends, siblings and, more often than not, my cousins. Those were happy times filled with running until you were breathless or laughing until you reached that same point. As an adult, unless you are playing tag with your children, grandchildren or other loved ones, the game takes on a different feel – especially when you get “tagged” to assume the role of the caregiver for your parent as a result of their advancing age and/or health issues. It is a difficult task for anyone to undertake – especially if you are also managing a career as a busy paralegal when you get “tagged.”
Handling the pressure that accompanies your dueling roles as an employee and as a caretaker can be difficult. It is not unusual for such challenging times to lead to life-changing decisions that you may not have previously anticipated making. Here are the stories of two paralegals and how they handled their own emotionally charged situations.
My first experience with caring for aged parents while working began in 1984 when my father had his first stroke. I prefer not to use the word elderly, because I do not consider anyone to be “elderly,” rather wiser because of age, but that is a completely different story. Following my father’s stroke, my husband and I began doing little things to help out my parents. As many of you likely know, once someone has a stroke, it is often just the beginning of more strokes to come. My father suffered numerous strokes (20 or so) and was ultimately unable to care for himself at all. My mother and my husband cared for him, including feeding him once he became bedfast in the last few weeks before his death in 1997.
At the time of my father’s death, my mother was 81 years old and was in fairly good health. Other than my husband driving her to do her banking and other errands while I was at work, she was able to care for herself. This continued until 2010 when my husband suddenly and unexpectedly passed away.
Also in 2010, my mother was diagnosed with advanced stage dementia, and was no longer able to do much for herself. She did not remember to eat or bathe herself; in fact, for much of the rest of her life, she did not even know what time of day it was. My two older sisters began taking care of my mother on an alternating basis from Monday through Friday while I worked. My role was to take care of my mother at night and on weekends as well as taking care of her grocery shopping, doing her banking and taking her to doctor’s appointments.
It was a difficult time and I often felt overwhelmed because I still had my own home to take care of, my mother’s home to take care of and also had to go to work every day. I felt like things were spinning out of control and I often felt like I was constantly running around in circles. It was not unusual for me to get calls at work when my mother became ill and I would have to leave to take her to the doctor. Basically, my life was put on hold. In an effort to continue to do my job, I found myself with my laptop with me at all times (doctor appointments, lab appointments and at my mother’s house). While for some people, working from home seems like a wonderful thing, for me, trying to work from home, or anywhere else remotely, is very difficult.
On September 12, 2014, at the age of 97, my mother passed away. As I look back on the difficult times, I recognize that I was fortunate to have a husband who was able (and willing) to help my parents and, in spite of the difficulties I faced in trying to juggle work and caring for my mother, I can truly say that I have been very blessed.
In 2003, at the age of 60, my father was diagnosed with prostate cancer. The treating urologist assured my father that, while it appeared to be an aggressive, fast growing form, the cancer had been found early enough that removing the prostate and following up with hormone therapy would be the appropriate course of treatment. As his daughter, I wanted my dad to be seen by the best doctors possible and begged him to get a second opinion, from a surgeon who specialized in cancer treatment.
That refusal was my first indication of the delicate balancing act you must do when dealing with a parent’s health. I’m not saying that a second opinion would have changed the ultimate outcome, but that discussion made me realize that no matter how I felt about it, my dad was still in control of his health – he just needed my help to deal with it. Finding a way to help my dad while respecting the decisions he made was the first lesson I learned about being a caregiver.
My dad had the surgery, recovered well and began following up with the urologist for routine blood tests to see how successful the surgery was. From the very first blood draw after surgery to review the level of prostate specific antigen (“PSA”), it was clear that the cancer was not gone. As his prostate had been removed, my dad’s PSA level should have been zero; it was not. The urologist advised that it was likely that “microscopic breakoff” had occurred during the surgery and cancer cells were now somewhere else in my dad’s body – somewhere that could not yet be pinpointed – and that regular monitoring was all that could be done until the cancer found its new home.
My dad went on with his life, following up as recommended, and late in the fall of 2006, while working on a project at his church, he fell off a ladder. He was taken to the hospital where x-rays revealed that he had broken some ribs. Because the fractures were not routine in appearance, additional testing was done and it was determined that the cancer had found its new home and had set up residence in his bones. He underwent chemotherapy (which made him extremely ill) and radiation therapy (which completely zapped his energy), both to no avail. When it was apparent that the cancer was not going anywhere, he was assigned a hospice nurse who came to treat him at his home and on June 10, 2008, my daddy was gone.
I was fortunate enough at the time to be employed with a firm large enough that taking leave under the Family Medical Leave Act (FMLA) protected my job. While I was able to work through most of my father’s illness (taking personal time as needed for assisting with doctors’ appointments, etc.), once his condition rendered him bed-ridden, I began taking time off under FMLA on an as-needed basis as my sister and I had to help our mother with his day-to-day care. We alternated nights at their home and had a schedule for daytime assistance which allowed each of us to continue working as much as possible. When it was clear that my father’s last days were approaching, I took FMLA leave on a full-time basis for the last two weeks of my dad’s life.
On April 6 of this year, my 70-year-old mother was diagnosed with Stage 3 lung cancer. As of the date I write this, she has completed her first segment of treatment (seven rounds of chemotherapy combined with 32 rounds of radiation therapy) and has decided to forego two additional rounds of chemotherapy at this time. She has elected to wait for the results of a PET scan, the results of which we will have by the time this article reaches you.
While I was employed by a smaller firm at the time of my mother’s diagnosis and treatment (so taking leave under the protection of the FMLA was not an option), I was fortunate to be in an office that offered me the option of coming in on weekends when my siblings were not working so it was easier to find someone to stay with my mother or to use personal days and vacation time when I needed to be out to care for my mother. I am hopeful that my mother receives good news following the PET scan, but I do recognize that it is possible that I may once again need to juggle a career while caring for my mother as her health deteriorates.
My advice to anyone who finds themselves in this position is to talk to your attorneys at the outset. It is much easier to plan a course of action to get your work done while being there for your loved ones if you start at the very beginning of the situation. I feel privileged to care for my mom as well as I did when I cared for my dad. Tia Walker, author of The Inspired Caregiver: Finding Joy While Caring for Those You Love, said it best, “To care for those who once cared for us is one of the highest honors.”