CARING FOR MY AUNT RENEE TALALLA

I struggled in writing this piece, because losing Renee sent a ripple of shock waves through the family. And though it’s now been 18 weeks since the day (September 13, 2020 at 3.03pm, Sunday) the ache is still there ….

My aunt, Renee Talalla, was a remarkable soul. Intelligent, well-read, articulate, funny and loving with a heart that gave and gave.

On June 5th 2020, with the prognosis of the final CT scan, Renee came under Assisi Palliative Care. This was also the day I came into the picture. There was never a question in my mind that I would not be there for her. Renee was fortunate that she had a strong supportive team in her corner. There was my Uncle Bert, Mohammad (a ‘foster’ son) and Jane, a Filipina helper, at the core, and an army of friends and family circling attentively close by.

I chose to do the overnight shift. I saw this as the time when the household was silent and dark and the time Renee would feel the most vulnerable, lonely and scared.

As time went on, we established a night routine. I would sit as close as I could get and hold and stroke her gently till she slept off. At times, she would have me lying in her bed to cuddle. It was all about the reassurances, of feeling safe, of knowing that she was not alone.

Renee was meticulous, always jotting down in notebooks, anecdotes, reminders etc. Here too, she began jotting the medications she was taking, her levels of pain and snippets of what was happening to her body. We, the caregivers, took over this recording, duly noting the time we administered the various medications – and there were plenty.

But it was not all gloom and doom. There were lots of happy times, laughter and bantering, fun visitors with song and dance, creative meals, walks in the garden and bizarrely, the selecting of the outfit (that Renee wanted to be buried in) which was a hoot that had Renee in stitches.

In June, Renee was mobile, vibrant, slept well and enjoyed her meals. Her pain level at 4/10.

In July, Renee was still mobile but unsteady. Her sleep patterns changed at night; waking up frequently. Felt pain in her jawline and headaches. Was disinterested in food. Pain level increased to 8/10.

In August, Renee would nod off in mid-conversation, initially for a few seconds that then stretched into minutes. She needed more support to walk and limited herself to just her room and the family room. Enjoyed having visitors and her face would light up in recognition. Dreams began to set in and she did not like sleeping in a dark room.

By September, Renee was too weak to walk so days were spent in her chair or in bed. Recognisable changes in breathing, reduced intake in nourishment, reluctance in taking meds, erratic sleep, eyes looked vacant and at times Renee may say something or make a gesture that seemed out of place but actually wasn’t. I will come back to this line later.

Being a care giver to someone under palliative care, knowing where this journey will lead, understanding that the journey will go through turbulent times, realising fully when the journey ends it ENDS. Full-stop. That you may or may not be there at that precise moment. But you do your best, your very best. Little innovations or adjustments to give that extra bit of comfort and reassurance – essential oils, music, a bright and airy room, photos to keep siblings and family connected …

The day I dreaded finally dawned. It was Sunday, 13th September.

I was sitting next to her bed and simply talking to my aunt. Renee was propped up in bed and staring and then she raised her arms as if to hug. I jumped up and responded with a hug. When I looked at her face, there was a bit of spit drooling so I took a tissue to wipe it. But more spit came out. And I made a joke about this. Then she gave a shudder. It took me another second or two to realise that she was ‘all quiet’. She was gone.

Later I was told that that shudder she made was actually her last breath. Staring past me and raising her arms was to someone she ‘saw’ in the room. The same too when she sometimes said or made a gesture that seemed out of context – it was figures that she saw in the room.

I cannot express enough the part the ASSISI PALLIATIVE CARE team played in all our lives. The care, comfort and support of Drs Lalitha and Teh, nurses Satwin and Roohini and Sr Kristin is unsurpassed. There were many nights that I called in panic, needing guidance or to reconfirm my actions. Every time the voice on the other end was calm and soothing. They guided us and gave us the confidence.

Their efforts and the work they perform so tirelessly are invaluable. For someone like me who had no idea what to expect, they guided me and helped me care for my aunt the best I could and for that I will always be extremely grateful.