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The hard side of caregiving

At Exceptional Care For You, we go the extra mile.

So, how do we stand out from the rest? It’s the authentic and meaningful relationships we build with our wonderful clients. Nurturing and growing these relationships isn’t a task for us, it’s the heart and soul of what we do.

We take the time to truly understand our clients and loved ones, making our job not just a service but a journey filled with care and compassion.

The two sides of caring

Two hands holding in pallative care

As with all good things, some moments tug at that heart.

Unfortunately, this year, we have lost three loved clients, two of whom have been with us since our business began. It’s the bittersweet reality of caregiving.

Navigating the hard side of caring has been a learning experience for our team. It has been interesting to see how each member of our team has coped differently and how we have learned to support one another. Each death has been different, with different expectations and levels of acceptance from the clients, and different connections with staff.

In these challenging times, we stand together, learning to care for each other as deeply as we care for those we’ve lost.

An unexpected death

Our first big loss left an indelible mark on our hearts. This client was challenging in more ways than one, not physically but emotionally, and tested the boundaries of patience and compassion. Despite the erratic and sometimes nasty moments, I consider myself one of the lucky ones who had seen a sneak peek of the real man beneath the surface.

With unwavering dedication and firm boundaries, we ventured beyond the challenging exterior. And oh, what a discovery it was!

When you truly knew him, you knew he was a kind, earth-loving man with a great sense of humour. We carefully chose a dream team of carers who, like me, saw beyond the surface. The bonds formed with myself and the four other compassionate carers were life-changing all built from genuine connections.

He danced between life and death with many ICU admissions, then miraculously coming back to life and returning home, he really did defy the odds.

The road was hard for him, he had discussed suicide and voluntary euthanasia on many occasions. His quality of life was a fragile thread, and many times he expressed the desire to not live anymore.

The heartache deepened as he was admitted to the hospital one day for a blocked suprapubic catheter (nurse speak, a SPC). Little did we know that within his fragile frame, mucous plugs had silently settled in his lungs, refusing to be dislodged.

In the quiet of that hospital room, just four hours later, he took his final breath.

His parents lived in the country and were unable to get there in time and asked that I go and comfort him. With a support worker already by his side, we rallied the other carers ensuring a circle of care surrounded him.

We all came in and gathered around with his uncle as he peacefully slipped away. Once I said he wouldn’t make it home, we offered comfort and made sure he wasn’t in pain. Minutes later he passed away, which was really what he wanted.

My team and I sobbed as he left us and for some time afterwards and again when his mum and dad arrived.

Although he spoke of leaving the world often and had been close on many occasions, we had become immune unintentionally, and the realisation of his passing would truly mean to us.

His decision to forgo a funeral from a kind soul, left us with a lot of grief with nowhere to go. My team were amazing and helped clean out his flat with his parents and we keep in contact with his parents.

The magnitude of the loss is still felt months later, with thoughts of him and his family bringing a tear to our eyes. He might not have fully grasped the profound impact he had on all our lives. 🌈💔

Palliative care, learning to let people die in their way

Our second experience was a mix of ease and difficulty. Although our time providing care for her was relatively short, our time of knowing her spanned a longer period. For those with her, it was evident that she was dying of cancer, yet her strong denial and sheer determination to not let it kill her made the situation challenging. She persisted in a seemingly unwinnable fight, making it tough for her to embrace the care she truly needed.

Heartbreakingly, she died alone as she would not accept that the end of her life was coming.

As someone deeply passionate about assisting clients to have a peaceful and dignified passing through excellent palliative care, it saddens me when individuals resist this support. Despite her age making her passing somewhat expected, the fact that she left this world alone tugs at the heartstrings and is uncomfortable.

In these moments, my wish is always to provide comfort and companionship during people’s final journey.

Letting go of someone who changed your life

Our third experience was undoubtedly the most challenging. This client happened to be the same age as me, and from the moment we met I knew we would be friends. We shared many laughs and tears, she was a wonderful, intelligent, caring, inspiring woman who could change you without you even knowing—a person with the extraordinary ability to shape you without you even realising.

She had a degenerative neurological disease, and seeing her rapid deterioration was emotionally taxing for everyone who cared for her. Despite her maintaining an okay quality of life, she made the heartfelt decision that she no longer wanted to endure it. Choosing to embrace active palliative care, she began the process on a Wednesday and, pain-free and surrounded by heartfelt goodbyes, peacefully left us by that Friday.

The swiftness of her departure caught us all off guard. It was a profound shock, and even though her team was prepared, the speed at which it unfolded was unexpected.

In my 35 years of nursing, I have never seen someone design their passing with perfection. She, in her own way, designed a farewell that was both swift and perfect. 🌷💖

Her passing left us utterly devasted.

We were devastated by her passing. 14 dedicated team members attended her funeral and we were asked with family members to light candles in her memory.

Nearly three months have passed, but the weight of her absence remains a challenging reality. If I pause to reflect on her, tears still find their way, and I know other team members are grappling with the same difficulty.

In an attempt to honour her, we gathered for a meal, sharing stories the night after she left us. During a sound healing session, we felt a profound connection with her presence. Despite these moments of shared remembrance, the gaping hole of grief persists for each of us in different ways. The impact of her loss is a testament to the indelible mark she left on our hearts and the deep bonds formed within our team. 🕊️💔

What I know about grief

Things I know to be true about grief;

  • It is the worst of all emotions, it casts a heavy shadow over our hearts

  • It is a predatory beast that waits till you are at your lowest

  • It’s undeniably difficult to work through with no clear roadmap

  • The only thing that helps is others who have been through it and time

  • It is the sneakiest of emotions and catches you off guard, striking when you least expect it, it’s unpredictable

The best definition I’ve heard of grief is; it is love with nowhere left to go. This is certainly true for our clients whom we loved dearly and who have passed away.

The collective of life’s experiences that make us who we are

It was challenging for me to continue to run a business the day after these losses. The emotional weight was not only min but also deeply felt by our team members, making it difficult to carry on with their usual dedication to caring for clients.

It's simple for people to perceive support workers as individuals who fill shifts on a roster. They are so much more; each client represents a connection that goes beyond the practicality of a work shift.

I think it is easy to see a support worker who is someone who fills shifts in a roster. They are so much more; each client represents a connection that goes beyond the practicality of a work shift, and when we loss a client, it is more than a loss of shift.

Next time you talk to a support worker remember they are a mosaic of all they encounter—both the uplifting and the challenging. Every interaction, every loss, becomes a part of their story. Let's approach our conversations with empathy and understanding, acknowledging the depth of their emotional investment in the well-being of those they care for. 🌟💙



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