Being a caregiver while caring about a PhD

12 February 2020

Luke Yates discusses how he coped with his wife’s long illness during his PhD programme.

In summer 2008, a year after I started my PhD programme, my wife Samantha was admitted to hospital with a severe chest infection. Sam had cystic fibrosis, and the infection wreaked havoc on her lungs. After a protracted hospitalization, she could not breathe unaided. Furnished with a canister of oxygen and breathing apparatus (a mainstay from then on), along with a substantial amount of antibiotics and other medications, she left hospital, and we carried on with our lives as best as we could. Sam went back to her job teaching a school class of 9–10-year-olds, and I continued pursuing my PhD in clinical medicine at the University of Oxford, UK. But she experienced another infection, which ended with her doctors wait-listing her for a double lung transplant. In January 2010, Sam gave up work, and we began to hope for a life-saving telephone call.

Caring for a loved one who had cystic fibrosis and was waiting for a transplant, while I was trying to complete my PhD programme, seemed impossible. In the laboratory, I was always on tenterhooks, thinking “Today could be the day we get the call.” This uncertainty and anxiety, together with the pressures of research, made my graduate studies tougher than most. As for planning my experiments and conducting research, I needed limited working hours so that I could provide physiotherapy, drug treatments and help to my wife. And I had to get home at a specific time because I shared caregiving responsibilities with Sam’s mum, who tended to her during the day. On top of all this, I had a daily commute of more than two hours. We couldn’t move closer, because we needed to live near our family.

I wonder how many PhD supervisors would take on a student with such complex and restrictive requirements? According to Nature’s 2019 PhD survey, my situation isn’t that unusual: slightly more than 10% of the 6,300 respondents said that they were responsible for caring for a child under 12, and the same proportion reported that they cared for an adult.

My own supervisor, Robert Gilbert, was compassionate and extremely understanding — and made sure that my needs were accommodated. He understood that I needed limited lab time and could not work on the weekend or in the late evening, and that my time would be punctuated with hospital appointments and calls about a potential matching donor, which would send me racing to the hospital at a moment’s notice, only to return home still in need because the lungs were unviable. More importantly, I wasn’t made to feel as if my circumstances made me ‘unworthy’ of a studentship, or that my limitations were a burden to either my or the lab’s progress — something I worried about during low points in my mental health.

With Sam’s health as the priority, I wrestled with plans to abandon my PhD programme or to continue managing the demands of research and an increasing caregiving load — and I honestly feel either path would have been acceptable. But I was committed to getting my PhD, not only for my own sense of achievement, but also to prove to Sam that her declining health was not a burden to my aspirations, as she feared. After I made that decision, this is what helped me to face the difficult challenge of managing my workload while caring for Sam.

Time management

To focus my attention and productivity, I carefully managed my time using an A4 week-per-view diary, in which I would write the detailed protocols for my experiments as they were planned, including the next steps if an experiment was successful. This worked well for week-long experiments, such as recombinant-protein production and purification, the foundations of my structural-biology and biochemistry projects. It also meant that I could maximize my time by filling the gaps between experiments with tasks for my other projects, such as cloning, cell culture, reading papers and computational work. In the end, this paper diary became a pseudo lab book, and I began to append experimental results to my detailed plans. Crucially, maintaining my notebook mitigated my ruminating on (and, quite frankly, being paralysed by) the enormous gravity of life.

Resilience

One interesting element of my circumstances was that they quickly put my ‘failed’ experiments into perspective; I rapidly developed resilience to failure and a stoic approach to work. I made time for coffee breaks and lunch with colleagues (which helped me to combat a sense of isolation). I opened up about my struggles with research, and sometimes about aspects of my home life, to the sympathetic ears of close friends.

Once I left the lab, however, I left my science at the bench and used my commutes to ‘decompress’ and focus on my responsibilities at home. That way, I could be an attentive and devoted husband. Given Sam’s prognosis and her declining health while she lived with failing lungs, it was important for us to make time for ‘normal’ life among the treatments and physiotherapy — so I deliberately did not work on weekends.

Avoiding comparisons

Inevitably, the challenges of being a caregiver shaped my approach to my graduate studies. I had to quickly dismiss comparisons I made between myself and other PhD students in my cohort. I knew I couldn’t use others’ achievements as a metric for my own progress. I had to accept that I had limitations, and adjust how I saw success. In short, I could do only my best, and I had to trust the PhD process — which meant that I simply kept planning my work and doing my research while believing that the results, publications and finishing line would come.

I successfully defended my thesis in July 2012, and published several papers from it on which I was first author — and I shared my elation with Sam. At that point, she was wheelchair-bound and we were still waiting for a transplant.

Sam would never see me graduate. She died a short while later, in April 2013.

Reflecting back on my graduate studies, I often wonder how I got through it all. PhD programmes are tough and demand a great deal of personal sacrifice. Sam and I didn’t get the outcome we desperately needed, but because I drew hard boundaries between home life and lab work, we were at least able to spend precious time together and find some moments of joy in what were Sam’s final years.

Dr Luke Yates is a research associate at Imperial’s Department of Infectious Disease.

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