Organising aged care options for loved ones can be a process fraught with complexity and emotion. And it’s often women who shoulder the responsibility of helping their parents, in-laws, or other older relatives navigate the plethora of options and make decisions.
According to a recent Women’s Agenda poll on Aged Care, 41% of the 600 women surveyed had previously helped a loved one access the Aged Care options they needed, while 40% said they had felt responsible for managing aged care options for one or more of their parents or family members.
As one respondent noted, “It wasn’t just the time involved in supporting my father through the system, it was my constant self questioning and doubt: is this right for him? Am I doing the right thing? How can I talk to him about it?”
Indeed, there is a lot of emotional labour involved in the process of researching aged care options and helping your family member figure out what is most suited to them and other members of your family.
Taking on board family members’ different perspectives, talking through all the options available, and then actually working out how to progress can be a minefield. Many people are thrown into this process suddenly when an older relative experiences a fall or other incident and their health starts to decline, and it can be totally exhausting work.
Someone who knows exactly what this process feels like is Kate Carnell, a recently appointed board member at Mable, the website connecting older Australians and those supporting them with in-home care services, and the former Australian Small Business and Family Enterprise Ombudsman.
Carnell’s family had had some brief discussions about what would be best for her parents in terms of care options, but ultimately struggled to get the balance right when it became clear accessing extra support was necessary.
The family had agreed that in-home support would be the most suitable option, but Carnell told Women’s Agenda that, in the end, they just didn’t get it right.
“I’ve seen personally how difficult and inflexible the system really is,” Carnell said. “My parents were capable, contributing members of the community and we didn’t get it right because I didn’t know what options existed.”
Carnell said she was quite shocked to find out how difficult it was, when she suddenly needed to navigate the world of My Aged Care, Home Care Packages and different service providers for her parents.
Throughout her career, both in business and politics, she had been involved in the health system to varying degrees – she had served as the ACT’s Health Minister – and thought her experience would make it easier.
“I’d even done a couple of inquiries into the aged care sector for governments, and my knowledge of the system was towards the top of the tree, but even I struggled,” she said. “The system is complex, and not simple to navigate or understand.”
“If it was like that for me, and I knew about the system, I wonder how many other women – and it’s usually women who get the job of doing this – get through it. And how people from different cultural backgrounds manage it.”
Carnell said it was a mistake to wait until her parents really needed an aged care package before starting to look in to the different options available.
Because the decision was rushed, it meant that the family settled for one in-home service provider without really understanding how it would work. They quickly discovered that their mother couldn’t cope with the different people being sent to her home all the time.
“Different people were turning up all the time to do the couple of hours of support that was a part of the package and in the end, mum, who was in her 90s, said she didn’t want anyone coming by at all,” Carnell said.
My Aged Care is famously difficult to navigate, and other online sources of information can be confusing to the untrained eye, as it often comes down to one service provider marketing themselves over another.
Get started early
If Carnell had her time over, she said she would make sure her family had the difficult, and at times emotional, conversations about aged care options much earlier, before it reached a crisis point (we recently shared some ideas on how to have these conversations here).
Carnell adds that she would have also accessed in-home services at a much earlier stage, so her parents could be eased into the process and having new people in their lives offering support could be normalised.
“We would have had lots of better conversations about it and not seen support as a bad thing,” she said. “It’s about being able to ease services in over time, so it’s not seen as one day you’re independent and the next day you’ve got all these people in your face.”
Familiarise yourself with what services are available
There are many different options available when it comes to in-home support, and it’s important that everyone involved is comfortable with what’s agreed on.
If the older person is concerned about retaining their personal agency and independence as much as possible, there are options to have greater choice and control over the support they receive. Opting to self-manage, or partly self-manage a Home Care Package can be a good option for some people, leaving much of the decision-making in their own hands.
Carnell said options like Mable, a platform that connects people with in-home care providers directly, would have suited her parents better than having so many different people visiting their home on a rostered basis.
“The people providing services on the Mable platform are small businesses, that’s who they are. They’re people running their own small businesses, or they’re sole traders,” she said.
Carnell said the one-on-one consistency would have helped her parents develop better quality relationships with the people coming into their home.
“They’re people who have decided what they want to do is provide services to people who are getting older. That’s who you’re dealing with directly, and it provides a relationship that matters to both players.”
Ask for help
Sorting out aged care options for loved ones is a load that so many women take on, on top of the other loads they often carry including paid work, care for their own children and other loved ones.
These loads shouldn’t be the responsibility of women alone, yet so often they are.
Help from other family members – including a partner, siblings, children, and other relatives – should be a given, rather than something a woman struggling under these loads should ever have to ask for.
Unfortunately, the offer isn’t always made or automatically obvious. So, a key and necessary final point here is to remember it’s OK to ask for help. Ask for help from siblings, from your own kids, from other relatives and friends of the loved one who needs support. Seek out other friends who have been through this themselves. Talk, listen and share.
Of course, it’s not always possible and might be easier said than done, but it’s important to remember that these are loads that should be shared when they can be shared.
This piece is part of an ongoing series Women’s Agenda is running with Mable. You can find part one on what you should know about the Aged Care system here. And part two on how to start conversations with a loved one about aged care options here.
Mable is a website enabling older people, as well as those supporting them, to find and choose their own team of care and support workers. The Mable philosophy supports positive ageing, including everyone’s right to have options and stay in charge of their lives as they age. To find out more about Mable, visit Mable.com.au