Caring Hearts, Comforting Souls: A Caregiver’s Tale of Love and Presence

When you can’t control what’s happening, challenge yourself to control how you respond to what’s happening. That’s where your power is…

Caring for someone with leukaemia who is approaching the end of their life can be an incredibly challenging and emotionally draining experience. As a carer, you may find yourself in a position where you need to offer support, compassion, and authentic communication to both the dying person and those who are witnessing their journey.

It’s important to recognize that while you cannot control the outcome or influence their growth process, you can still make a significant difference through your presence and caring approach.

Your role essentially is to walk beside them with love, an open heart and a deep abiding connection.

Recently, I found myself contemplating how I could offer some comfort to a wonderfully intelligent man who against all odds was still embracing each day with a sense of normality despite his diagnosis.

His mindful focus on simple tasks like ‘weeding’ and ‘making lists of things to do’ had him wrapped in the present and oblivious to the future, caught up in his own expanded awareness and appreciation for the family who rallied around him.

Oncology appointments and blood transfusions made me realise how resilient the ‘dying’ are. In a ward of very sick people, the energy continued to be surprisingly light and being hooked up for treatment didn’t really unsettle the majority of them.

I suppose in a way dying individuals often become more accepting of their impending mortality because they have had time to reflect on their life, make peace with their circumstances, and perhaps find spiritual or philosophical comfort.

In contrast, loved ones may struggle with the impending loss due to emotional attachments, unfulfilled hopes, and a fear of the unknown. The dying may have had the opportunity to prepare mentally and emotionally, but loved ones may not have been afforded the same freedom for self-exploration.

So where do I fit in as an outsider caught up in the dynamics of a sensitive situation?

In those quiet moments, I sense the weight of his struggle and that still, unspoken peace permeates the space. It is here, devoid of conversations, where acceptance becomes a gentle companion, a beacon of strength. It’s not about changing the course of his journey but embracing his reality without judgment. I believe that I am here to provide companionship, not to provide answers.

So with that in mind, I listened with an open heart, a gesture that transcends words, and in between the comforting touches, I offered a safe haven, allowing him to share his thoughts, fears and hopes without interruption and in so doing, offer solace through the gift of genuine presence.

I started to understand and respect his inner world, engaging in the delicate conversation about funeral planning and making light of the order of service. These rituals of comfort were important to him and offered moments of peace and reflection. I participated wholeheartedly, my presence a testament to my unwavering support and solidarity.

But, this journey isn’t without emotional turbulence. As he started to become more unwell he realized that he could not intellectualize and find answers to support his decline. I too, acknowledged my own feelings of helplessness, sadness, and sometimes frustration, but concluded that this was not a sign of weakness, but a sign that my heart was full of empathy and love for this special man.

As he continued to contemplate his life, he never stopped believing that despite everything, he was still…

born under a lucky star

His comfort and dignity became a powerful expression of love to all those involved in his care at the end. From his existential concerns about life to assessing his nonverbal physical needs, the generosity of the Community Nurses, Specialists, Doctors and ultimately the wonderful Hospice Team ensured that he would be well looked after throughout the transitional process.

I do believe that he felt an overwhelming sense of peace and love. He was ready and although death was a silent companion on his journey at the end –  it remained ever present, sometimes acknowledged but never all-consuming…

It has been an honour and a privilege to know you, to serve you and to walk beside you as we navigated these tempestuous waters together – thank you!

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