Jai Pausch, dreams new dreams: reimagining my life after loss (Two Roads Books, an imprint of Hodder & Stoughton, Hachette UK, 2012. Pb, Rs. 295. pp. 224)
In September 2007 Carnegie Mellon Computer Science Professor Randy Pausch’s “The Last Lecture: really achieving your childhood dreams”. ( ) It went viral and within a short space of time had over 10 million views. It resulted in a media buzz and the professor being invited to talk shows across America. In 2006 he had been diagnosed with pancreatic cancer. By the time he delivered his speech, he was terminally ill, having been given only 3-6 months to live by the oncologist. (He was to defy the prognosis by a few months. He died on 25 July 2008.)
His wife Jai Pausch published a memoir dreams new dreams: reimagining my life after loss ( documenting her time as Randy’s primary caregiver and how she learnt come to terms with his death and move on. It is a very moving account of how she learned to balance mothering, housekeeping and being primary caregiver to her husband. Their children were Dylan (four-and-a-half), Logan (twenty-two months) and Chloe (three months whom Jai was nursing) when Randy’s cancer was discovered. It was tough for her. But she writes movingly about learning how to take on more responsibility as Randy’s condition deteriorated. Very quickly she learnt that self-preservation is as important as caregiving. So she learnt to rely on help from family, friends, neighbours to the extent that they helped her unpack her belongings and settle into a new home.
Caregiving at the best of times is a very difficult responsibility and there is no respite, especially if you are the primary caregiver. Schedules of the caregiver, the daily humdrum (which are equally important) can easily go for a toss if not monitored equally diligently, but it becomes quite challenging if it also involves looking after small children. The mother is torn between her responsibilities. And this is something that comes through in Jai’s memoir. When Randy was being given chemotherapy in a different city, she would spend the week with him only to return home to spend the weekend with her children and do everything with and for them, including cooking a regular meal.
A big concern for a caregiver is the looming fear of death. It is a numbing feeling that makes thinking or doing any normal chore nearly impossible since the mind is always worried about losing the loved one to death. It is only when the caregiver faces the reality that some sense of peace begins to creep in. A similar feeling is expressed by Jai when Randy tells her that he saw his dead father in his room. “After months of worry and fear, after living in the shadow of death and witnessing the pain of letting go of life, Randy’s death came as somewhat of a relief to me. I could let go of Randy or at least the role of caring for him. I could stop trying to save my husband by running him to experimental treatments. I could quit obsessing over every change in his health status, stop worrying that even the smallest symptom, like bloating, could be a sign of something more serious, such as kidney failure. The strain of keeping him alive each day, which weighed terribly on me, was now gone.”
The pressure of being a caregiver is exhausting, but it is worsened by being unable to share one’s experiences or even let off some steam once in a while. It is quite normal to want to vent one’s emotions. Jai was fortunate enough to have “had a friend to whom I could talk about my feelings without fear of being misunderstood.” This recognition of reaching out to other people in a similar position like herself had prompted her to write this memoir. She writes, “Their grief and guilt they felt for mistakes they perceived they had made echoed some of my own feelings. I asked myself, Where is the help for folks like us who tirelessly give to our dying loved ones? Why wasn’t the medical community concerned about the people who struggle to carry the medical burden while also meeting normal everyday demands?” With this book she hopes that “my dream is that my story will legitimize what caregivers undergo willingly and bravely as they care for the person they love. Patients need and deserve support, but it’s time for us as a community to understand that suffering that is shouldered, sometimes silently, by our family members, neighbours, friends and coworkers. We need to offer help to these people, to develop and implement programmes at cancer centres and other organisations. We need to empathize with that person taking on the duty of overseeing the patient’s care and well-being. Finally, we need to care for the caregiver.”
dreams new dreams is a must read for all caregivers. Without being dull or voyeuristic, it is sensitively told — it is honest, frank and a useful aid on caregiving.