Through our work with over 1 MM employees with access to our platform, we have found that many people simply do not realize they are caregivers. They are just being “a good daughter” or “ a dutiful son.” Or as a parent, it’s simply “just part of the job.” The reality is that facing the challenges of aging, parenting a child who may be struggling educationally or emotionally, or simply parenting in today’s digital world - it’s all a form of caregiving. Individuals from their late 20s through far later in adulthood are faced with a complex and stressful maze of information and necessary decisions across all societal systems: legal, financial, educational, regulatory, medical, mental health, home life structures. How many of you have turned to a friend or family member and stated “I don’t even know what to do about (insert any family challenge you’re having). That - is caregiving.
Since last Fall, we have been asking individuals to write their own story around their challenge related to working and also being a caregiver in some manner. We’re honored to have Debra Hallisey, Founder of Advocate for Mom and Dad, continue our discussion around the challenge that 43.5 million Americans face trying to work and care for someone they love with some degree of challenge - even when they do not even realize they are a caregiver. She has quite a story, so we’re breaking it up into a two part segment, similar when Elizabeth Miller of Happy Healthy Caregiver wrote for us last Fall.
“I am an employee caregiver.” Five words that give me a voice. Five words that make it OK to own, and tell, my caregiver story. My dual life.
I’m several years into this caregiving journey and I wear the caregiver badge proudly now. This wasn’t always true. Like most people, I did not identify as a caregiver until years into the role. Even after my head knew it, my heart struggled to admit it. Admitting it meant letting go of my life, as I knew it. Admitting it meant letting go of preconceived notions about caregiving.
I spent 30 years traveling throughout the US and Canada as a professional writer and trainer. I loved seeing new places, educating people, and learning new things. When my parents were healthy, being gone for days or weeks at a time wasn’t an issue. Yet, as child in closest proximity to my parents, I should have realized more clearly that I would become my parent’s caregiver.
My father’s heart attack changed my world. For the first time, the individual who was my rock was vulnerable. I began to monitor him carefully. You see, dad was mom’s caregiver. She is legally blind with mobility issues and for years he had helped her - all while taking care of the house inside and out, grocery shopping, bill paying, doctor visits. My dad did everything for the two of them.
Dad’s heart attack was the start of my transformation from just a professional to a working caregiver. I continued to work. For several years it was manageable and my client was local to my home and parents. I did not even think about the fact that I was their caregiver, as I could balance both parts of my life. I had dinner with them once a week. That transitioned into staying over their house, helping dad keep up with housekeeping, run errands, and cook with mom.
Then my client changed. Travel kept me from seeing my parents as often, and I was in a state of a heart and head divided. It was the start of guilt and frustration at work and at home. We talked once a day and I became a master at listening to more than what they were saying, trying to determine if things really were “fine.” For five years we lived in this “new normal.” I continued most of my usual life. It was stressful, but still fairly normal. Then things changed and my full shift into a full time working caregiver occurred.
Five Minutes Changes Everything
Dad was attacked by a pit bull, while out walking his own dog, Bella. Both he and his dog recovered, but it took an incredible toll on him and was the start of a visible decline. I was thrown into full blown caregiver mode. Dad’s hands were bandaged, so he could do little for himself, and he had multiple doctor visits. Bella had to be carefully watched, medicated, and carried everywhere. I became mom’s caregiver and responsible for household tasks. Somehow I was caring for Mom, Dad and their pet - everything changed in that five minute attack.
I had just started a new job with a client in Chicago. Fortunately, the company allowed me to work from my parents’ home; but when travel was required, we hired someone to stay with my parents. It was a stressful and costly nightmare. Five years later, dad was diagnosed with congestive heart failure (CHF), and my shift to full time working caregiver was completed.
Work + Unidentified Caregiver = Disaster
Did I identify as a caregiver then? No. I was on autopilot and did what needed to be done. Maybe identifying as a caregiver would have allowed me to ask for help, let my company know how bad it really was and worked with them to take time off. But the job was new, and I felt like I had to silently perform. I certainly was not going to share my personal life with management. The guilt that I felt was constant. Guilt because I was out of town and couldn’t help. Guilt because I wasn’t doing my best work in the office. Angry at the draining travel schedule.
In November of 2014, dad was hospitalized, and I knew that he was failing quickly. My work was suffering more significantly and for the first time, I was reprimanded for it. This was incredibly painful. So much of my self-identity was tied up in my job. My client wasn’t happy. Yet, I couldn’t commit to traveling easily. I was required to improve and asked when my situation would change. I was stressed, tired, angry and sad.
I did not feel that I could tell management the details. How do you tell someone that your father is dying and “in three weeks this will all be over, and I can travel again.” Feeling pressure and failure at work added sorrow and grief on top of what I was already feeling about my dad. I wish I had handled it differently, but I didn’t know what I didn’t know. My boss asked if I was afraid something would happen while I was gone. That is exactly how it played out. I was away working in Canada, my mom called to tell me that dad was back in the hospital. My worst fear was realized. I was hours away from them when they needed me. We lost him 5 days later.
Could I have handled this differently? Of course. But at the time it seemed impossible. Second guessing yourself is part of caregiving. The worst part is that it becomes life draining - for the caregiver.
[Please join us on Monday for Part II of Debra's story...]