Imagine this: At your elderly but independent parent’s latest medical check-up, your parent is given a diagnosis of dementia. You are stunned, but it helps explain the confusion you have recently witnessed. Suddenly, you are faced with a number of questions and choices that need to be thought through: How is your parent going to be cared for? By whom? How long will they need help each day? How fast will things change in the condition? How will you make it work given that you have a full-time job and a full life and caregiving wasn’t on your radar – at least not yet?
Chances are, during your lifetime, you will be a carer, responsible for the needs of someone else. Caring touches each of us; if not directly, then we know friends who are caring for others. It may be an elderly parent, a spouse or life partner, a disabled child or a family member with a chronic illness. Statistics tell us that caring for others is a very common experience – and one that is set to grow given our ageing population.
In Australia, it is estimated that carers will provide 1.9 billion hours of unpaid care this year; meanwhile in New Zealand, there are 420,000 carers of all ages – a figure Laurie Hilsgen, the CEO of Carers NZ, suspects is an underestimate. Despite these figures, many of us may not envision our lives caring for others (aside from young children.) Life’s plans can be shattered by suddenly having an unexpected dependant on your hands.
Hilsgen co-founded Carers NZ more than 20 years ago after living through several experiences of being a carer, first when she was 32 years old. She spent 10 years caring for her life partner who suffered a debilitating stroke and had around-the-clock needs.
“I would torture myself by thinking through worst-case scenarios,” she recalls. “What if this happens, what if that happens? The things I worried about mostly never happened. I regret the energy I spent and the things I never saw coming … Try to find ways to look after yourself, be at peace in your own mind and ask for help. Put yourself first.”
The first step is the hardest
The uncomfortable questions raised by the above scenarios will have different answers for each of us. What is important is the ability to engage in conversations with family, community members and employers before you actually need to. The typical situation for carers is one of juggling care with full or part-time work, which has huge implications on the carer’s time and money. Being prepared for these issues can pay dividends; Hilsgen says people wait too long to have these conversations and find themselves at crisis points making emotional decisions.
For example, you might say, “Mum can live with us,” without fully thinking through the impact of such a life-changing decision on family relationships, finances, responsibilities, personal care or siblings. If your relationship with your mother has always been fraught (maybe you have experienced her as neglectful, controlling or manipulative in the past), it may be unwise to take her in just because she’s now frail; painful dynamics are likely to continue playing out.
Of course, making decisions based on guilt is common, but they can lead to depression or compassion fatigue. Resentment then becomes insidious and hard to undo. We live in a culture that praises individual choice, and we’re often not equipped for self sacrifice. crossing the bridge early
The possibility that our parents, partners or children will require long-term care is a topic most people assign to the “let’s cross that bridge when we come to it” basket. We don’t want to give it much air time – the possibility is scary and thus easier to avoid. But having a conversation about uncomfortable “what if” scenarios means thoughtful solutions are considered early, including who looks after who, for how long and for what compensation.
Hilsgen mentions cases where one sibling takes in their elderly parent and provides all daily care, maybe even giving up their job. When the parent dies, there may be an assumption on the part of the carer that any inheritance would reflect the sacrifice made – a monetary acknowledgment to compensate for lost earnings. As with many family dynamics, the unsaid assumptions can cause enormous conflicts and long-term damage; the siblings may assume the carer “wanted to help” and are shocked that there should be money involved.
Hilsgen recommends trustee companies or some other neutral mediator to help, as well as family-care agreements, which work much like prenuptial agreements. Agreements are made in advance, about whether there will be payment for caring and how that might work. Power of attorney and wills can also be agreed upon. The advantage of such a proactive approach is not just about avoiding conflict; it can put one’s mind at ease to know what support is available. Knowledge is power
Understanding what’s offered means you can have a plan and that can allay anxieties; Carers Australia has a toll-free number as well as information on its website about state support and resources for which you might be eligible. In addition, there are other private organisations (such as Care Connect) that match people who need help with caregivers.
There are also tools out there to manage the number of people involved so all parties in a support system can see what’s going on. This type of system would be great for those caring for others from a distance (an elderly mother in another city or country, for instance) and gives carers information at a glance, both financially and regarding such things as housework, meals, personal care, outings, visitors and respite options.
Australia and New Zealand lead the world when it comes to workplace support for carers, according to Hilsgen. She has been working with businesses and unions to raise awareness about carer issues in the workplace. Why? Because up to two-thirds of employees are carers, so it’s important for carers to know where to go for help and for their workplaces to have care-friendly policies. For example, flexible work hours, and allowing communication with vulnerable family members during work time and other practical help may be necessary.
Early this year, Carers NZ launched a care-friendly workplace accreditation programme called CareWise. Carers Australia is meeting with Carers NZ, in Melbourne in March, to discuss how a similar programme might work in this country. If and when we find ourselves carers, imagine the relief at knowing your workplace has already thought through policies to address situations like yours.
Don’t do it alone
Carers often believe it is possible to do it all. They might even be encouraged to do everything by the patient, who is reluctant to involve outside carers. Therefore, it can be hard to see the wood for the trees when you are exhausted, on the treadmill of many appointments and no breaks, meeting every need that you can. It can be useful to think about your boundaries and how much you are willing to compromise your life in specific domains such as employment, health, leisure, exercise, friends and other family.
A sobering fact is that caring may put you at a higher risk of death. The statistics bear this out with very high levels of depression (two-thirds of carers) and high rates of compassion fatigue: the condition of being so burnt out that the level of support you can provide suffers. Looking after yourself first might mean accepting that your reality is now different from what you’d imagined it would be; adjustments can take time and include waves of loss and grief.
Caring is something we have always done as humans living in communities. The majority has historically been done by women. Carers tend to get tagged on to the person who needs care, but Carers NZ argues that if one person needs help, then everyone in the household needs help. We all know the old saying “It takes a village to raise a child,” but perhaps it takes a village, or a modern community, to care for any one of us.
Here to help
Carers Australia: This national organisation is Australia’s foremost body representing carers, advocating on their behalf and influencing policies and services at a national level. The website features a number of resources for carers. carersaustralia.com.au
Care Connect: One of the leading homecare organisations in Australia, Care Connect aims to empower people to live their life their way. That means helping people learn, navigate and plan as well as connect people with the care they need to continue living independently
at home. careconnect.org.au
Carers New Zealand: A national not-for-profit supporting a network of approximately 490,000 individual carers and supporting organisations. The organisations creates awareness about carers, their role, and their needs within New Zealand and internationally. carers.net.nz