Ian and Virginia: support for families and loved ones

early onset dementia

Ian Darley, in his early 60s, enjoyed life on Sydney’s iconic northern beaches with family and friends and also loved his work as chief mechanical engineer - design and development at a major Australian technology firm.

A man known for his sense of humour, Ian enjoyed hosting barbecues and was an avid Rugby Sevens fan, always making the trip to Hong Kong for the annual tournament.

Then in January 2010 came the shock discovery of advanced bowel cancer. Ian spent Australia Day in his first round of chemotherapy. It was a difficult time as Ian tried to come to terms with his diagnosis and having to finish work. Meanwhile his wife Virginia was thrust into the role of carer, seven days a week, 24 hours a day.

A referral was made to Hammond Care’s Northern Beaches Palliative and Supportive Care Service (NBPSCS) and Ian was encouraged to become involved in a support group for people with terminal illness that met at the Palliative Care Day Hospital in the grounds of Mona Vale Hospital.

Struggling at times to accept his situation, Ian was initially reluctant about attending and also unsure about being matched with a volunteer for one-on-one visits.

But from the moment he first attended the day hospital, Ian loved it and the four hours on Tuesday became a highlight of his week. He could forget his health situation while being surrounded by the friendship and support he needed. For Virginia, it was encouraging to see him get out of the house, and at the same time be in a safe environment, given the seriousness of his condition.

Ian also began to enjoy regular visits from a volunteer, Sam, and this became especially important as by November 2010, Ian had become too unwell to attend the support group. Ian and Sam would often just watch television together for two hours on a Monday. On one occasion, the chaplain visited Ian, and they spent some time talking. It was a chance for Ian to share some of his feelings “man to man”, as he was concerned about overloading his wife.

As Ian became weaker, he found it hard to get around. With help from the physiotherapist and occupational therapist at NBPSCS he learned strategies to cope with this.

Another important service was the loan of equipment from NBPSCS at no cost. It was comforting to Virginia that the experienced staff knew what equipment might be helpful - and that she didn’t need to worry how much it cost or how long they had it. Toilet seats, handles, walking frames, wheel chairs, shower chairs - all helped Ian live at home as normally as possible.

This support enabled Virginia to care for Ian at home until the very end of his illness when he was admitted to hospital. Once again the link with NBPSCS made a difference with volunteer Sam spending many hours besides Ian’s hospital bed. It was more care than Virginia could have imagined.

Then several months after Ian’s death, there was one last support for which Virginia was thankful. She was invited to be part of a grief and loss session for a time of remembrance, at the palliative care day hospital. It completed the circle of care and filled her with thankfulness for the role of the Northern Beaches Palliative and Supportive Care Service.


This project is funded by the Government Department of Health and Ageing.

Case notes

Ian was referred to the Northern Beaches Palliative and Supportive Community Service in February 2010. He had earlier been diagnosed with metastatic adenocarcinoma of the bowel, widespread skeletal metastases.
During the 12 month period that Ian was known to the palliative care team, he received palliative chemotherapy for the systemic disease and radiotherapy to painful bone metastases. Ian regularly attended the Palliative Care Day Hospital at Northern Beaches for therapies, advice and support from the multidisciplinary team.
Towards the end of Ian’s life, as he became weaker, home visits by the team occurred. They worked closely with the Northern Sydney Home Nursing Service and the GP.
When Ian’s condition became unstable he required hospital admission close to home. Our palliative care Staff Specialist provided consultative advice and support. Ian died in February 2011.
Dawn Hooper
CNS
Northern Beaches Palliative Care

Vital support from the circle of care when it was needed most.