Being a Caregiver: Does This Need to be "Hidden" to Survive Graduate School?

Anonymous Authors

​Working your way through graduate school usually happens within a framework of other adult life activities.  Our adult lives are full of happy times, such as getting married and having children.  Managing graduate school around daily life events is known to be very stressful and challenging (Bozzon et al. 2017).  Yet navigating graduate school with chronic illness surrounding you and your nuclear family is an entirely different challenge.   With 58% of doctoral students taking more than five years to complete their degree (Single, 2009), experiencing serious family illness during training is entirely possible. 

​With 58% of doctoral students taking more than five years to complete their degree (Single, 2009), experiencing serious family illness during training is entirely possible. 

​Caring for someone while working is often “hidden” from the employer (Metz et al. 2018).  Women often hide caregiving so they are not considered to be weak or unable to be “all in” because their attention for family caregiving may be a distraction to the bottom line (Barrett and Barrett, 2011).   Even though there are considerable number of female faculty members in higher education, there is often the same expectation for female graduate students to “hide” their family responsibilities for caregiving from academia (Castle and Woloshyn, 2003).   As men have become engaged in childcare at all age levels, there is more tolerance for issues related to flexible hours associated with transportation of children to and from school, navigating school time off periods with work schedules, and attending children’s after school activities before the end of the workday (Barrett and Barrett, 2011).  Yet, caregiving related to illness is still a “hidden” activity impacting women’s career pathways, including obtaining graduate school degrees.  Although there is some literature examining grief and loss when working on your undergraduate degree, to our knowledge, limited research exists on caregiving in graduate school.  In this posting, three female graduate students tell their caregiving stories while pursuing a doctoral degree, discussing how aging parents, pregnancy, severe illness for a spouse, and illness and death of extended family members impacted their educational process.    

Graduate Student #1 - Case Study of Aging Parents

​When I entered graduate school there were several key milestones to be navigated.  My degree required finishing a mandatory field course only offered every other academic year before embarking on the dissertation proposal.  Because I was an older graduate student (40+ years of age), I had aging parents with early stages of chronic illness.  I literally prayed each semester that no one would fall ill and require full time caregiving before I finished the required classes.  The semester I enrolled in the field course, my father was diagnosed with prostate cancer that metastasized into terminal bone cancer.  All semester I would call and talk to my family members 2,500 miles away wondering if I would make it home before he passed away.   I asked my family about dropping the course and coming home, but they encouraged me to stay enrolled knowing that if I did not pass the course I would be financially committed to an additional three semesters of tuition fees and living expenses.  It weighed on me throughout the coursework, yet in another way, I focused in on my work as a relief to thinking about my father. 

​I returned to school and was able to start my proposal phase.  However, I had to manage my own grief and loss for the next 18 months while I continued on the journey. 

I wasn’t able to be with my family day-to-day for either my father or my mother’s caregiving process.  That was painful to deal with, however, I did volunteer to do some activities helpful to local family members juggling their own careers.  I was able to accomplish caregiving through the internet.  I managed a Caring Bridge Web page (www.caringbridge.org) for our family to post updates to inform a wide network of friends and relatives.  Caring Bridge is a charitable nonprofit organization allowing families to easily communicate a loved ones’ chronic or terminal illness.  Families can set up a personal web page and password to log in and receive updates.   Messages of support can be read by anyone having access to the site. 
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Thankfully at the end of the semester, I immediately took a flight back east to visit my father.  He was doing better than expected, but in serious decline.  Truthfully I wondered if this would this carry on throughout the remainder of my graduate school experience.  I made a return trip mid-summer to care for my father for four weeks.  He died that summer.  I was able to stay for the funeral and support my mother and siblings in the passage of the patriarch of the family.  I stayed and assisted with transforming a hospice style medical environment back into our family home for my mother to continue to live in – now a widow.   I returned to school and was able to start my proposal phase.  However, I had to manage my own grief and loss for the next 18 months while I continued on the journey. 

​During the coursework period for my graduate degree, I had to compartmentalize family challenges into the annual academic calendar.  That can be very difficult, but I had to openly communicate with my family the consequences of ill-timed decision-making on the graduate degree training process.

My mother was in better health, but I knew this might not hold true while I entered the formal proposal and dissertation phase of my work.   Over the course of the next 18 months, my mother’s health began to naturally decline.  I did not want my committee to think that I could not manage my life and completing the dissertation so I kept most of the challenges to myself, while calling in emotional and caregiving support from other friends and family members.   I only lifted the veil of my feelings to my advisor when a true emergency arose requiring travel back home.  Otherwise, I remained silent about it.  It was a delicate juggling act.  Early on, another doctoral student in my cohort had to take a semester off to care for her mother, and the faculty marginalized the student from the program until she ended up quitting.  Witnessing that, I learned to compartmentalize my contribution to my mother’s caregiving into semester breaks, spring breaks, and summers.   It was an emotional roller-coaster of feelings to manage throughout the process of obtaining my degree. 

​Important Take-Away:  During the coursework period for my graduate degree, I had to compartmentalize family challenges into the annual academic calendar.  That can be very difficult, but I had to openly communicate with my family the consequences of ill-timed decision-making on the graduate degree training process.  It was also important to find an on-line support mechanism to contribute and feel a part of my father’s caregiving process – one of the positive benefits of internet communication and social media.  

Graduate Student #2 - Case Study of Death of an Extended Family Member

I was a graduate student and had just finished obtaining approvals from my committee on my dissertation proposal.  My research study involved collecting data from registered nurses at a regional hospital located in another state from where I was attending my university.   To conduct the study, I had to obtain approvals from the institutional review boards (IRBs) of both the healthcare system and my university as part of the human subjects review process.  During a dissertation process, submittals to the IRB can take several weeks or months to prepare the application.  For those who have not been through this stage of work yet, obtaining an IRB approval letter is similar to obtaining a “permit” to construct a building.  Without an IRB approval letter your research project cannot “break ground.”  For most institutions, IRBs only meet once per month at a university, and in a healthcare institution they might only meet quarterly for approvals.
 
​I began my application for IRB submission for the hospital and my university by downloading all the criteria and documentation I would be submitting.  I put together a schedule of work to approve my research project and based on the two institutions meeting schedules, I would start the process in August and submit in October to allow approval in November.  December was going to be for any additional re-submission requirements from IRB feedback for obtaining the final approval letter.   The goal was to begin data collection in January of the New Year. 

​They were very supportive; however, they are running a large institution with routine schedules and cannot change the process continuously for these types of situations.

While working on the IRB submission in September, I called my favorite aunt to catch up on her health and well-being.  She was suffering from lung cancer (a chain smoker most of her life).   She was now 79 years of age and had been living with this condition for the past year.   I was her only niece and my aunt always treated me like a daughter coming to visit, when I obtained my bachelors and master’s degrees 20 years ago.   We shared stories as part of our monthly update about family items.  When I hung up, I thought to myself, I wonder how many more months she would be healthy? And, would I be able to visit her before the completion of my dissertation?   Two weeks later my cousin called indicating my aunt had taken a dramatic turn for the worse.  She was admitted to the intensive care unit with her lungs full of fluid.  The family monitored the situation.  She was unable to speak and a week later succumbed to congestive heart failure.   I was crushed with emotion.  After a weekend to process things, my family called and said the funeral would be next week – the same week my IRB submittal was due.  I had a serious decision to make – go to the funeral and support my family to honor my aunt, or stay the course and make the IRB submission? In making the decision one way or the other, I needed to do three things:  1) understand my options, 2) talk with my family, and 3) meditate on the matter. 
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The schedule of the IRB approval from the hospital was a critical item in my schedule.  If I missed this submission cycle, I would have to push the IRB approval into the next semester.  This would most likely mean an additional semester increasing my tuition and living expenses. I called the healthcare IRB office and worked through the deadlines.  They were clear that no time schedule adjustments would be possible even under extenuating circumstances.  They were very supportive; however, they are running a large institution with routine schedules and cannot change the process continuously for these types of situations.  I understood, but just wanted to verify for my own decision making what my options were.   My original assumptions were verified – it was submit in October or wait till February.

​After understanding my options and gaining insight from family communications, I still didn’t have a definitive answer to go to the funeral or stay and complete the IRB submission.

I called a series of family members for support.  I specifically talked with both of my cousins (my aunt’s children who were like siblings).  I wanted to make sure they felt supported.  They clearly communicated they were overwhelmed with the funeral arrangements and getting information out to the 500 anticipated guests.   They told me to come if I felt it was necessary for me and not worry about them.  I did look into emergency flights and hotel arrangements, but soon I realized this was going to snowball into a significant expense with minimal time on the ground to see my family. 

​After understanding my options and gaining insight from family communications, I still didn’t have a definitive answer to go to the funeral or stay and complete the IRB submission.  I decided I needed to have a talk with the one person who could give me the answer – my aunt.    I reserved a time in the evening to sit down and be with myself.  I lit a candle and got out some pictures of my aunt and put them on a table near a comfortable chair I could sit in.   I played some quiet music and took several deep breathes and just continually focused on my aunt, and our monthly talks.  I was grateful that during our last talk we had connected and laughed.   She and I loved to tell stories about all the funny things in life.  I could feel her while reminiscing in my mind about her.   As my meditation came to a close, my anxiety of going vs. not going to the funeral subsided. I slept on my final decision and I called my cousins the next day to let them know that my thoughts were with them, but that I decided to stay and finish my IRB submittal and venture forward with my research study.  I went to visit my cousins the following summer after I had completed data collection.  They were happy to have family support nine months after the funeral when things had quieted down and they could share their emotional grief more openly.  Staying on track was the correct decision for myself after weighing all the information I could gather at the time. 

Important Take-Away:  I was relieved I had chosen monthly telephone updates with my Aunt throughout her illness, so when her health declined I was comfortable with knowing I had communicated directly with her about my feelings for her in my life.  It made making the decisions about not attending her funeral less of an anguishing situation.  Additionally, knowing my IRB schedule and having a solid relationship with the healthcare institution’s IRB office coordinator helped me realize the critical windows of time for approval.  Utilizing information and seeking out answers to tough questions was essential during a family emergency.

Graduate Student #3 - Case Study of Her Pregnancy Then Illness Striking her Spouse

I don't know why I felt like I had to hide becoming a mother in graduate school. When I chose to change my career options and go to graduate school, it was late in what I considered to be my child-bearing years, and figured that children were just not in the cards for me. As an older student (30+ years) with professional experience, I excelled as a leader and top performer. A few months into the Master’s program, I decided that I would stay on and immediately start a doctoral program. About half way through the Masters and during the doctoral application process, I became pregnant. Although I was thrilled at the idea of having a child, it seemed like disclosing this information would make people view me in a different way. I ended up not telling anyone in my Masters cohort that I was expecting, save a few very close project partners. I also only told one faculty member (who was happy for me and extremely supportive), but I remember the conversation sounding a lot like me doing all the talking, apologizing about how the child wouldn't get in the way of me finishing, how I would still be a leader, and that my priority would be on school-- even though the baby was due in the final capstone semester of my degree. I did finally tell my cohort, but did not do it until I couldn't hide it any more, right around six months. Everyone was supportive in this situation, but it all started with me feeling like people would think that I wasn't a leader anymore, or would only care about playdates, or that I wasn't capable of having a child and getting my advanced degrees.

​It was in this same mindset that I had my in-person interview for the doctoral program. I purposefully wore black, a men's tailored shirt untucked, and a black suit coat left unbuttoned. Since the interviews were at a table, I knew that my belly would be hidden unless someone was really looking. I made it all the way through the interviews and acceptance without anyone finding out, and it wasn't until the middle of the first semester that people figured out that I had a 15-week-old baby at home. Even though there was talk of, "we are a family here, we want to celebrate those things," it just wasn't the vibe I got. 

​Since the interviews were at a table, I knew that my belly would be hidden unless someone was really looking. I made it all the way through the interviews and acceptance without anyone finding out, and it wasn't until the middle of the first semester that people figured out that I had a 15-week-old baby at home.

There were amenities like a breastfeeding/pumping room on campus, but it was in a faraway building. So I would lock myself in my office and pump at my desk if my three office mates weren't there. If they were in the office, I would go down the hall to the vacant office and lock myself in with the dusty stacks of books and dismantled furniture to pump when I needed to. There was no overt discrimination to make me hide, but it was a general feeling of it not meeting the expectations, or a distraction. I am sure some of this was self-imposed, but you can tell when it is a value that people have families and when it isn't. How are you supposed to go through the "punishment" of grad school, when you have a little one to keep you up at night? In some circles, this just does not align.

​I continued to feel like I had to hide my caregiver duties when my partner had a heart attack in his early 40s. He was 100% blocked in his right coronary artery, and he almost died. The nurse shared with me that they call this artery the “widow maker,” and how lucky we were that he made it out alive. It was the first year that I was supposed to be working on my dissertation hours, and I almost became a widow. Not only a widow, but a widow with a two-year-old, an overloaded schedule, an unfinished degree, a paused career, in a town with no family, and few friends. This was a huge event in my life, and with it came depression, anxiety, and writer's block. Although people acknowledged the event when it happened, after some time had passed, there was what can be described as a feeling that I was "damaged goods." Yes, I had performed well in classes, was a sought after research assistant, and even rocked my preliminary exams, but when the heart attack happened it was like people didn't know what to say to me anymore—so they just quit talking. There was really nowhere to talk about how difficult it was to almost lose your partner, or what it was like to have a partner with a life-changing medical diagnosis. So I continued to hide what was going on with me. Even though I know some of what was going on is a standard phenomenon in graduate school (anxiety), I might have been able to get through this roadblock more quickly or effectively if I didn't feel like I had to hide that I wasn't a machine who could do anything, meet any deadline, or fit into the mold of the good employee. I lost close to an entire year of degree progress dealing with this crisis in my family, not to mention the physical and mental toll it took on me personally. This substantially added to the time commitment and financial costs of the doctoral journey.

​Even though I know some of what was going on is a standard phenomenon in graduate school (anxiety), I might have been able to get through this roadblock more quickly or effectively if I didn't feel like I had to hide that I wasn't a machine who could do anything, meet any deadline, or fit into the mold of the good employee.

​Important Take-Away:  Honestly, I have no regrets about what I chose to reveal about my personal life, and when or who I chose to share it with. Faculty must understand as leaders in the departments, they send signals (overt and covert) that showing students how much they are cared for as people or how much support might be available to them when they are struggling. After watching so many people drop out of the doctoral journey and the lack of care afforded to those who were not succeeding, I knew that I would end up in the same “ghost yard of students past”, if I did not find a way to rectify the situation myself. I found substantial support from other students at other universities through online services, and this really helped to normalize the fact that so many students have crises of this magnitude during the degree. Also, the faculty member from my Master’s program that I revealed my pregnancy to, remained a mentor, confidant, and friend through all of this. Without her, I might have never finished, or might have given up during the darkest times. There is support out there, but it might not be your doctoral faculty members, fellow cohort members, or even services provided by your university. The important piece is that you must build your own support network, and the make-up of that network may surprise you. Go outside your program and connect with other students to give and gain support.  Without it, I would be ABD (all but dissertation) …

Conclusion: Can We Break This Cycle? 

​There seems to be this overarching feeling that if graduate students have any "personal" issues, or if even something emerges requiring a small portion of their attention, that they may not be capable of getting the work done anymore. Or, that you will probably become one of the 66% of people who are ABD (Single, 2009), so why put any additional time or effort into you?  These graduate students did overcome all of these struggles to complete their degrees, however all of them found the resources they needed outside of their departments, after some faculty withdrew their support through body language or lack of interaction.  The doctoral process is very hard, and it is designed to be that way.  But we need to remember we are human beings, with life events requiring support. We need more departments where it is okay to be your “whole self” in the pursuit of higher education and not a compartmentalized robot moving through the program and checking boxes toward completion. Changing the attitude is going to require department chairs and other tenured faculty members to gain empathy and tolerance about the impact family caregiving matters have on the graduate student experience.  Until then, we will continue to see people hide their true selves in academia while pursuing their degrees.

References

​Barrett and Barrett (2011) Women and academic workloads: career slow lane or Cul-de-Sac?. Higher Education, 61 (2), 141 -155.

Bozzon, Murgia, Poggio, Rappetti (2017). Work-life interferences in the early statges of academic careers:  The case of precarious researchers in Italy. European Eudcation Research Journal, 16 (2-3), 332 – 351.

Castle and Woloshyn (2003) Motherhood and academia:  Learring form our lived experience.  Journal of the Motherhood Initiative for Research and Community Involvement, 5 (2), 35 – 46.  

Metz, Smith, Case, Assylkhan, Voss, Wei (2018), Can we “have it” all? – How Primary Child Caregivers Manage Their Academic Journeys.  Academy of Management Professional Development Workshop Proposal #10890.

Single (2009).  Demystigying dissertation writing:  a streamlined process from choice of topic to final text (1st ed.). Sterline, VA; Stylus