“When life and death arise, simultaneously, during a pandemic...”, “Half nurse, half family member in palliative care”
“When life and death arise, simultaneously, during a pandemic...”
“Half nurse, half family member in palliative care”
It was Carnival Day… common to so many other years and once again working. But this time was different… that was the day that I had the confirmation that I was pregnant. The news was received with surprise and a mixture of fear, I confess… second pregnancy… the beginning of a new cycle, a new life, a new family dynamic… and suddenly the country and the world collapsed! Without certainty, but with a lot of fear and anguish, we began to realize that we had lost the best thing a human being has—health, and associated with this, freedom… to be when and where we want, with whom we want, for as long as we want!
In March 2020, with the closing of schools and the worsening of the pandemic, the home became our family bubble of protection, and, at the same time, Dad’s workplace. And here began another challenge, to be together for 24 hours! I often say that no one prepared us for this! It was a real ordeal for everyone, kids, and adults alike.
The pregnancy was going on seemingly normally, but the behaviour in society was not the same. The surveillance responses of pregnant women were highly repressed: “all doors” to the father figure were closed, both in primary health care and in hospitals, and the guaranteed rights were relativized. Accompaniment was not allowed in crucial moments… the father was not present (in the consultations), did not see his son (in the ultrasounds), and did not hear the heartbeat or the news about the sex of the baby… the mask hid the smiles and fear prevented the presence, sharing and bonding, everything that we know is fundamental for positive and adaptive parenting (1). But the biggest challenge was coming...
In July, life began to change… the experience of twelve years working in adult oncology as a specialist nurse made me fear a diagnosis of serious illness in a family member...my paternal Grandfather (2). The living force of 85 began to fade... the autonomous man, who lived alone for almost 2 years because my grandmother was institutionalized, began to show signs of weakness, lack of appetite, and sadness… we talked as a family and the decision was difficult but consensual... it was impossible to help 60 km away, and from the interior village, he moved to the city. There was still no diagnosis, but the body was giving signs, and the incessant search for answers began…
At six months of pregnancy, I entered the oncology institute door again, but now accompanied by him, and with the (un)certainty that an oncologic disease was present. The looks from friends and colleagues were of compassion and at the same time of concern and repeatedly said “you shouldn’t be here!”, but I was the one he trusted, the only granddaughter, and this mission had to be mine!
With a diagnosis already defined and faced with the refusal of invasive treatments, we still managed to get him back home, which was his great wish.
The pregnancy was almost over and at 38 weeks we took the hardest decision, to admit him in my unit—the palliative care unit... and on the second day he was there, I went in person to give him the news that my grandmother, his life partner for almost 60 years, had passed away, and at that moment, I know that a little bit of him died too!
Palliative Care was his (our) home for the last two weeks of his life… All (my) team took care of him and never lacked for anything: rice pudding at every meal, water without gas, affection, and video calls to our family.
On October 29, I gave birth my second child and my colleagues show him the grandson photos. There was still time for some video calls—never has technology allowed so much affection and closeness as in those days (3).
He passed away (ironically) on November 1, the day after I returned home from the maternity ward, and as I said to myself softly “that’s life happening!”
A word of infinite thanks to (my) Palliative Care Unit!
Acknowledgments
Funding: None.
Footnote
Provenance and Peer Review: This article was a standard submission for the series “The Human Experience” published in Annals of Palliative Medicine. The article did not undergo external peer review.
Conflicts of Interest: Both authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-23-87/coif). The series “The Human Experience” was commissioned by the editorial office without any funding or sponsorship. The authors have no other conflicts of interest to declare.
Ethical Statement:
Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.
References
- Charon R. The patient-physician relationship. Narrative medicine: a model for empathy, reflection, profession, and trust. JAMA 2001;286:1897-902. [Crossref] [PubMed]
- Trust, P. Negotiating Boundaries: the nurse family member caring for her own relative in palliative care. Doctor Thesis of Philosophy in Nursing. Victoria University of Wellington. 2010; 227p.
- Laskow T, Small L, Wu DS. Narrative Interventions in the Palliative Care Setting: A Scoping Review. J Pain Symptom Manage 2019;58:696-706. [Crossref] [PubMed]
