When Anna’s* parents came to visit last year, she was determined to give them a relaxing holiday in her Queensland beach town. She’d been worried about them – her mum had been diagnosed with Alzheimer’s disease and her dad had been having frequent falls. For years she’d been trying to get them to talk about whether they needed to move to aged care, to assess their financial situation and face what was coming next, but they’d dismissed her, saying they were fine.
On the first day of their visit, Anna’s dad fell and broke his leg, badly. “He went into hospital and Mum came and stayed with me. I realised what they’d been covering up. Mum was so confused she was walking around the house without any pants on, which was confronting for my teenage boys. She didn’t know what day it was and she couldn’t read a clock. Then the hospital told me Dad was withdrawing from alcohol and had some dementia.”
Anna moved her parents to a nearby aged care centre while her sister packed up the family home. The sisters had always had some issues in their relationship but the stress of seeing their parents so vulnerable, of selling the house and working through the financial situation, led to harsh words and hurtful accusations. Anna’s sister told their parents they were arguing. “They were distraught. It was awful. I had to set some boundaries, and I just stopped all communication.”
Caregiving can expose cracks in families and widen them to caverns. Since I’ve been working in this area, I’ve heard many stories like Anna’s and spoken to experts about how families can fall apart just when they need to come together. There’s often resentment about the burden of care on one child, conflict around the pressure of making huge decisions and the horror of the “sad-min” of form filling. Issues around money are particularly messy. And families who have had past conflict and trauma are particularly at risk.
Research released on Thursday by online care platform Violet reveals the depth of anxiety surrounding Australia’s ageing population and gives insights into families who love deeply but plan poorly. Its poll of a thousand people found more than three-quarters of Australians are concerned that caregiving will damage their relationships with family members and 70% worry about managing past family conflicts and unresolved trauma when caregiving. Previous studies have shown 45% of caregivers experience relatively serious conflict with another family member, usually because one sibling tends to carry the heaviest load.
Each statistic tells a unique and personal story of relationship breakdown, resentment and real anguish. But the consequences affect us all, because the conflict often plays out in publicly funded late-stage hospital care. A study published in the British Medical Journal in 2019 found patients whose families are in conflict were nearly 10 times more likely to receive unbeneficial treatment towards the end of their life.
Ken Hillman, professor of intensive care at the School of Clinical Medicine at the University of New South Wales, has been warning about the cost of misaligned care in the last moments of life since the 1980s. His most recent research in the Internal Medicine Journal cited overtreatment as a major contributor to decreased capacity of hospitals, reduced ability to conduct elective surgery, increased attendances at emergency departments and ambulance ramping. Hillman says family conflict is the biggest cause of non-beneficial treatment at the end of life. “I’m not too sure if it’s guilt or existing conflict or just not facing the problem, but one sibling will often demand life support because they want to believe in hope or a miracle.”
Prof Imogen Mitchell also sees the cost of conflict in her job as an intensive care specialist at Canberra hospital. She says most families haven’t even thought about whether they’d want their loved one going to intensive care and this can lead to panic.
“Often sons are more wedded to keeping them alive, saying, ‘She’s a fighter’, whereas it’s often a daughter who does more of the care who will say ‘I’m not sure Mum would want all this’. Often, a new wife and the children of the patient will be in conflict – the wife wants all treatment that is possible and the children will be more pragmatic. Meanwhile, we hold a patient in suspension while family members get on the same page.”
Often this can take time because all sorts of family issues can play out.
Mitchell urges people to know their loved one’s wishes before they are in a hospital corridor or get a call from a specialist.
“I could count on one hand families that have had this conversation … it can bring a family together if they all know what would Mum want.”
Professors Mitchell and Hillman recommend comprehensive planning for life’s final years. Families need guidance to navigate complex medical decisions and care coordination. Different states have different recommendations for health directives, but clearly we need better guidance and fundamental planning tools. Parents hate it when their children fight – setting the rules around ageing with clear direction and communication may be the best gift they can give their children and themselves.
Not all conflict can be avoided but some plain old appreciation for those who do the hard work in caring is a good place to start. Sharon* in Sydney spends half her week driving her father to appointments, cooking his meals and cleaning his flat. She does it with love but concedes the lack of the slightest bit of interest from her two siblings has lessened her love for them. “Just an acknowledgment and a pat on the back would go a long way. There are times I even feel I hate them.”
Often healing old wounds in families is too difficult. But at least putting them aside or not developing new divides is the least we can do for those people who gave us life.
*Names have been changed
Sarah Macdonald is a writer, broadcaster, an advocate for the sandwich generation and an ambassador for Violet organisation
