The role of family caregiver is one many of us are thrust into with little notice. When my caregiving journey began, I had been working full-time and was enrolled in a graduate studies program. This all changed drastically when my mother had a massive stroke, leaving her paralyzed and unable to consume food or liquid via swallowing. And it happened while my father was still recovering from his second stroke, sustained a month earlier. Fortunately, he was mobile and able to receive nutrition in an orthodox manner, but still required a significant amount of help. These events occurred in the first quarter of 2014. I was 30 years old, and chose to leave work in order to care for my parents full-time.
At the time of their health crises, I had not yet established myself firmly enough in a career to take advantage of an extended sabbatical from the workforce. I was aware of this fact, of course; but I did not take into consideration the full financial implications of my choice.
Incidents I had witnessed during my parents’ stays in the hospital and in rehabilitation facilities gave me serious pause about relinquishing control of their well-being to the healthcare system. My concerns were due mostly to miscommunication, and I soon learned that there was little if any recourse for family members and patients who had received inaccurate information from medical staff or insurance representatives. This was especially problematic if the error in communication resulted in money being spent out of pocket for a procedure or medication that insurance should have covered.
Some people label caring for an aging or disabled parent a burden. I found the bigger burden to be having to constantly monitor other people’s actions and, in a sense, do their jobs for them. These factors solidified my decision to manage my parents’ care in lieu of building my financial future.
The Realities of Caregiving Full-time
To go from working full-time to suddenly having your movements confined to home is a major adjustment, and one most of us now can grasp during stay-at-home orders. But on top of that, I was managing the care of two people with wildly divergent medical needs. Working outside the home allows one to compartmentalize various life roles and helps reduce stress and anxiety. But everything collides in one space for family caregivers. I would imagine the same is true for stay-at-home parents. At times it felt as if I had three jobs: managing my mom’s care, managing my dad’s care and managing the household finances.
Luckily, my parents planned well and had enough funds in retirement benefits to cover their expenses, as well as necessary medical supplies. I know this not the case for many, who face catastrophic health woes and devastating financial circumstances. My parents were both retired when they became incapacitated. They most likely would not have returned to work even if they had never had strokes, because their respective incomes provided for their needs.
Caregivers, on the other hand, often reduce their work schedules or withdraw from the workforce completely to help a loved one. This action carries with it serious implications that I had not considered thoroughly when I made my decision. Because the time spent caregiving and the diversity of a family caregiver’s daily tasks are not known to those without personal experience; caregiving is often viewed as a minor life disruption, or at best a part-time job. This is simply not true.
My parents had Medicare and a supplemental plan. I hesitated to change that in order to be reimbursed for my time, because I was unclear on the process and worried any new plan would risk a downgrade in.
As I mentioned, my mother lost the ability to swallow after her stroke and required a feeding tube. I had to learn how to administer nutrition and medications via this Percutaneous Endoscopic Gastronomy, without formal training. In hospital or rehab settings, only registered nurses are authorized to perform this task. But insurance would not pay to have a nurse come to our home to administer the food and medications. Therefore, it was up to me to do it.
The fact that family members who are managing a loved one’s care play a vital role in the healthcare system, often times to their own financial detriment, should be acknowledged to a greater extent. Sometimes it would dawn on me how many responsibilities I had; yet I was not compensated for any of them.
I realize family caregivers can be reimbursed for their services. However, I live in New Jersey, where the care recipient must qualify for Medicaid in order for the family member to be reimbursed for time away from the workforce. My parents had Medicare and a supplemental plan. I hesitated to change that in order to be reimbursed for my time, because I was unclear on the process and worried any new plan would risk a downgrade in the care my parents could receive from physicians and the hospital if they had to return.
I also felt that I’d rather focus on an endeavor that I would pursue after my time as a caregiver had ended, instead of focusing on getting paid for what I was doing in the moment. But one cannot predict how much time will be spent as a caregiver. For me, it was six years. Some people spend a decade or longer. Most will only carry out these duties for those closest to them and have no plans to work for a skilled nursing facility or home health agency in the future, so the nursing skills they’ve learned don’t translate into later employment. After their long pause working as caregivers, they may have a more difficult time re-entering the outside workforce.
Planning Ahead, in Policy and Personal Life
It would benefit family caregivers if employers in the United States were more forgiving of such career interruptions and even designed roadmaps for those who wish to continue with their original career after caregiving, or explore another one. National work training programs for family caregivers would be of great benefit.
Currently there is no financial help once one’s caregiving journey has ceased. Funding for temporary assistance while caregiving would allow individuals caring for a loved one to carve out time to plan for their financial futures while they continue caregiving. Then the time spent out of the workforce would be less detrimental to future prospects.
I would encourage every family caregiver who has lost the ability to earn an income to use some of this busy time to think about the skills and knowledge they possess that will most benefit them in the future, when they may need to reinvent themselves. Caregivers make so many sacrifices, it would be in their interest to position themselves for the best career situation possible once that chapter in their lives is complete.
John Poole lives in Southern New Jersey, and holds a Bachelor’s Degree in History from Rowan University. He is eager to share his many years of caregiver experience as a way to inform and support others in similar circumstances, while raising their collective societal profile.