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Making a dying parent’s life as good as possible; experiences of a teenage carer

Kathryn Dwan with her son Naryan Dwan-Holland.

As a teenager Kathryn Dwan devoted six months of her life to caring for her father as he died of AIDS following a blood transfusion in the 1980s. Now a senior policy officer at Palliative Care Australia, she recognises that as a carer she made a valuable contribution to her father’s spiritual and emotional wellbeing.

Knee replacements were supposed to be a relatively straightforward means of relieving Joe Dwan of arthritic pain that had plagued him for years. But during his second round of surgery, in 1981, he nearly died on the operating table after being given a blood transfusion. His doctors were mystified as to why.

Afterwards, Joe’s knees functioned brilliantly, but his health started declining in other ways. He had regular bouts of pneumonia. He kept losing toe nails to recurrent fungal infections. When he went to his doctor in 1986 concerned that he had 10 out of 13 symptoms of AIDS, his doctor’s immediate response was “Don’t be silly”. Soon afterwards Joe learned that the blood he received during surgery was contaminated with HIV.

Telling the story about how her father came to be diagnosed with the virus two days before Christmas in 1986, Kathryn Dwan remembers her overriding instinct was to protect him. She was just 19 years old.

“I was fortunate to have the opportunity to utterly devote my life to my father in his last six months – to just be with him and try to make his last days as good as possible.”

Kathryn’s three siblings had work and family commitments which restricted their capacity to care directly for their father. Her mother Cec, had to work. Without Joe’s income, the family was financially vulnerable, relying on food drops from St Vincent de Paul Society. Balancing work with caring for Joe was so exhausting Cec slept under her desk during lunch breaks.

However, as a part-time university student still living at home, Kathryn was able to discard unnecessary distractions and focus on his care.

“I didn’t see myself as a carer. I was wanting to be with my Dad and help out. My Dad was dying and I just wanted to be with him.”

She remembers cooking him meals, trying one dish after another without success, desperately trying to tempt him to eat despite his waning appetite.

“Now I can see that I was providing psychological, social and spiritual care for my father.”

She took her father for drives, often to his favourite spot on the coast. From a windy vantage point on a headland, they would savour the spectacle of a bird hovering effortlessly in a sweet spot, motionless in the sky.

Keen to keep her father engaged and interested, Kathryn sat on the edge of his bed and read to him. Sometimes she played guitar.

“Once Dad started coughing, he just couldn’t stop. He had this particular cough which I can’t describe, but it seemed to come from the depths of his soul.

“When he coughed I would lay down beside him and try to do a meditation with him. I would stroke his back, trying to soothe him and get his mind off the cough, so that he could calm his breathing.”

Once she needed to bathe her father, doing her best to be upbeat and matter-of-fact in the face of the humiliation it brought him.

She loved him, even when medication turned him “into the nastiest person in the world”.

“We were told he had pre-senile dementia, but when they stopped the medication the behaviour stopped and my sweet, loving dad was back.”

Kathryn occasionally served as her father’s advocate, making sure his needs were heard and met. She remembers him wanting to walk from the car to her brother’s graduation ceremony. Others were encouraging Joe to use a wheelchair, because he was so weak.

“I sprang to Dad’s defence. It was important for him to walk in and if that took half an hour that was okay.”

She also helped him achieve a living wake. It was held at a carer’s home and Joe was able to thank everyone who had cared for him.

Kathryn, now a senior policy officer at Palliative Care Australia, says the Queensland AIDS Council supported the family enormously, scheduling two carers in the morning and two in the afternoon. She and her mother Cec shared the remaining shifts which extended overnight.

The precious last six months Kathryn spent with her father bought great rewards. He confided in her, telling her things he hadn’t discussed with anyone else.

“I remember my Dad talking to me about the capacity to love and give. He said I was just like Mum and that was his greatest compliment. One time he even bought me a dozen yellow carnations as thanks.”

Kathryn says caring for her Dad was a formative experience that has left her with a strong sense of self-worth. At the time, she was reluctant to engage with any acknowledgement that she was doing a good job.

“Now I can see that I was providing psychological, social and spiritual care for my father.”

But the experience also took its toll.

“When things happen and you are a teenager, your experience and focus is so different from everyone else your age. You feel quite isolated. That was my experience; no-one understood. I was alone in this.

“Mum and Dad had each other, but I didn’t have anyone.”

Kathryn says she continued to feel alienated for many years after her father died, but then she became friends with a young woman who, as a teenager, had lost her mother to cancer.

“She was the first person with whom I really connected a good four or five years after dad died. I felt like there was finally someone who understood me.”

In the early stages of her grief, Kathryn found herself crossing busy roads without checking first that it was safe.

“It was like I didn’t matter. What mattered was gone. I just went through the motions.”

Today, however, she says her Dad feels very much part of her life.

“When the life force ceases in a living being it has to go somewhere. Energy doesn’t disappear, it is transformed in some way, so I feel I carry within me part of Dad’s life force and I am trying to pass that on to my son.”


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