For years, my spouse, Xavier, grappled with a myriad of health challenges such as heart conditions, several types of cancer, diabetes, and Ménière’s disease which leads to feelings of dizziness and impairment of hearing. Nevertheless, his resilience, the progression of medical science, and tireless efforts from his healthcare providers, enabled him to lead a life in the way he always desired.
In 2016, a minute lump on his jaw was subjected to a series of tests. Initially, it was presumed to be benign, but more comprehensive tests in the United States revealed that it was a cancerous growth in the parotid salivary gland. His surgeon excised as much of the tumour as was viable without causing significant harm to the muscles, nerves, and structure of his face. He underwent radiotherapy following his convalescence and seemed to gain a few years of life.
Availing this extra time, he lived with unwavering vigour. As time passed, the tumour enlarged and warranted another, more drastic surgery. The extended operation lasted over four hours, and led to irreparable damage of his muscle tissues and nerve endings. This left him with an asymmetrical facial appearance and an eye that refused to shut. Simultaneously, surgeons removed a cancerous lump from his forehead.
In response to his eye condition, an innovative method introduced by an ophthalmologist wherein a minuscule gold slice was inserted underneath his eyelid, allowed his eye to partially shut.
Despite his health declines, Xavier persevered with medical timelines, continued his travels, engaged in playing snooker, gardening and was still the main handyman of his home. Eventually, the day transpired when he was given the devastating news of a cancerous spread to his liver, and was given an estimate of weeks, perhaps a few fortunate months, to live.
I have often been intrigued by the process of mortality, having witnessed the denial and false hope surrounding death in family members. Although medical care was always prime, there was a significant lack of emotional support, leaving an unbridged gap between being alive and impending death.
Xavier took a brave stance and made the difficult choice of informing friends and family about his terminal condition, maintaining transparency about his ongoing battle with life.
His end-of-life care process was underway. There would no longer be any active medical tactics used. He was forwarded to supportive medicine, a form of palliative care, with a focus on ‘supportive.’ His general practitioner (GP) remained persistent, adjusting his medication to ease symptoms instead of attempting to cure. This condition, filled with fluctuations, spanned over 23 months. Each day, whether good or bad, was a bonus celebration for us.
In January, he fell ill during a sun holiday, leading to hospital admission. After his return home, his GP’s visit resulted in another hospitalization, this time in isolation due to that season’s flu/respiratory infection he had acquired, adding to his other health challenges. After a ten-day stay and a series of tests, he discharged himself home, as he had done previously. But the man we considered invincible, as he stated the next morning, was “on his way out.”
His life continued, but at a slower pace. He began to selectively choose what activities he could and couldn’t engage in. He was eating less and losing weight. The weight loss, which was once a moment of joy, now felt like a shadow of death looming over us.
The final decline stage set in. Xavier conceded that he was no longer capable of driving – a consolation. A visit to friends was planned, but he was too frail, so they visited us. As they left, we all sensed it was the last time the four of us would stand at the doorstep, embracing. Two days later, an attempt for a meal at our local pub was cut short; our regular Sunday lunch couldn’t proceed.
The term ‘palliative’ transitioned into ‘hospice,’ a term that was once unfamiliar but now became common. We were introduced to hospice care through our nurse, who was a beacon of compassionate, efficient care. She gently unveiled Xavier’s desires and preferences. She clarified questions, made the seemingly unachievable achievable. The hospice registrar arrived for an assessment visit, evaluated the home’s amenities, examined Xavier’s mental state and mobility, and encouraged him to persist in getting up each day, shaving, dressing, and doing whatever he was capable of.
In association with his family’s wishes, Xavier chose to stay housebound. Despite his condition, he was not problematic and pain wasn’t part of his experience. In the face of death, he addressed the matter philosophically, often uttering, “Aren’t I experiencing a wonderful death?” which rendered us speechless, often in tears. Thanks to his approach, we were all able to candidly discuss, even sometimes spruced up with some dark humour, a topic that had previously been off-limits when other family members passed.
In due time, the need for a hospital bed became apparent. Once it was delivered and put together, Xavier positioned it in no time. From that same bed, Xavier articulated his final wishes, detailing his preferred funeral proceedings. He decided to shift from cremation to burial and designated the cemetery of his preference. His commands also included a sealed coffin for the procession, Prayers for the Sick ritual, specified music, hymns and a singer for his funeral Mass, and most notably, he didn’t want to be laid to rest in his prime suit.
On April 19th, a Friday, he relocated to the downstairs section of the house. Despite the nurse’s insistence for the comfort of a hospital bed, he stood his ground, stating, “I don’t want any fussing.” As he remained resolute, he aimed to reshuffle the dining room furniture. Nevertheless, family members had other visions, and they invaded the house like a swarm of locusts, hauling the dining table and chairs to a vacant room and displacing the sideboard and its items into the corridor. Ensuing this, a single bed along with tables and cosy chairs was arranged, vases were filled with flowers, candles were set out for a tranquil ambiance, and the patient was settled. The dining room, boasting a beautiful glass door that allows the afternoon sun to filter in, golden walls and flooring reflecting the warmth of the sun, and long cretonne curtains adorned with sprawling pink roses, emerged as the heart of the home.
At some point, a hospital bed became vital. The bed, once delivered, was swiftly and seamlessly set up by Xavier. With its installation, home care services escalated, including regular home visits from our hospice nurse, daily assistance from InisCare, sessions with a community nurse, and the presence of a night nurse from 11 pm to 7 am. Xavier was firmly in the system, which ran smoothly and seemingly without effort. His comfort and care were prioritised as were our needs for support.
We shared conversations and deep discussions, listening attentively. Xavier’s appetite dwindled; his medication was stopped while his inclination for red lemonade was indulged. The following days were emotionally draining, filled with tears and occasional laughter, as his ability to move, hear and see gradually diminished.
His room acted as a sanctuary for tranquillity – the lodestar of our home, with all activities revolving around him. As relatives and friends came by, the kettle was forever simmering. He began to weaken slowly, over the course of the next week. His general practitioner paid a visit, a standard procedure within two weeks of expected death. His passing was imminent – a fact equally known to him and us. One Saturday afternoon, agitation took hold of him; a tranquillizer, administered intravenously, was repelled by Xavier, failing to provide the intended respite. His refusal reflected his pattern of discharging himself from various hospitals.
His death occurred at 7.09 on a beautiful spring morning. We were beside him, observing his serene respiring until his final breath. He opened his eyes – we like to think he was looking at us (his nurse confirmed this). She was the one who disclosed, just a moment later, that he was gone. Making eye contact with us, his family, was his final act.
Death isn’t always a negative experience
My exploration and subsequent creation of a radio documentary called “Dying with Love”, broadcasted on RTÉ Radio 1, made me familiar with hospice care. It opened my eyes to the understanding that the process of dying and mortality doesn’t always have to carry an entirely negative connotation. The documentary subsequently inspired a book with the same title and various features.
Throughout the years, I have found myself intrigued by the numerous discussions around assisted death. While I find myself fundamentally inclined towards the notion, the idea of travelling beyond the Irish borders to facilities like Dignitas in Switzerland at a steep price is unsettling. However, after witnessing the navigation of death and dying first hand, it is my hope that I will be integrated into the hospice system in my final days. The author of these lines, Patricia O’Reilly, is renowned for her biographical fiction.