What being a primary carer really entails

Anyone with loving parents understands the desire you may have to take good care of your mum and dad in their old age, just as they did for you when you were a child. Or maybe your parents are adamant they’ll never move to a nursing home, no matter how much care they need.

Whatever the situation, you may find yourself considering whether to become the primary carer for your elderly parent or parents. You’re far from alone – statistics cited by the Royal Commission into Aged Care show there are almost a million unpaid primary carers in Australia, about half of whom care for people aged 65-plus. Two-thirds of those carers are women, with an average age of 55.

The practicalities of being a primary carer

Caring for elderly parents in their home or yours can be surprisingly demanding. From every day jobs such as extra cooking and cleaning to the more difficult tasks such as showering, the decision to be a primary carer shouldn’t be rushed.

Dimity Pond, a doctor and a professor of general practice at the University of Newcastle, says you should make safety your key consideration when making such a decision. She says you should think about the things your parent can and can’t do themselves such as if they are able to cook safely, can get up to go to the toilet at night by themselves or shower without help.

If their safety poses a great risk then these are all tasks that as a family carer you may have to take on. More complex tasks are another consideration; assisting your parents with, for example, managing their finances or their medications may be time-consuming, regular assistance you will need to provide.

In Australia residents can receive home care assistance with a dedicated professional making visits to the house to help with every day chores or more complex medical conditions. While the family carer may have some ability to fulfil these tasks occasionally they may require assistance with a demanding elderly parent.

The government provides funding for home care through My Aged Care as part of the Home Care Package (HCP). This allows a person to receive support from a professional a certain number of times a week for medical assistance or tasks around the home.

“All of this takes time and effort and some of the practical aspects of assisting with showering and dressing can also be quite physically demanding,” Dr Pond explains to Starts at 60. “It is important in that case to seek help perhaps through My Aged Care, so that your own life as a carer is not too limited by problems caused by the caring, such as a bad back!”

Accessing support is vital to ensuring you don’t develop physical or mental health conditions yourself as a result of being a carer. A Carers NSW study of 1,800 carers found that three-quarters of respondents suffered a long-term illness or disability as a result of their care responsibilities.

Readying a home for care

Everyone’s strength and balance typically declines with age and although your parents may still be relatively mobile, this can change quickly, leading to life-changing falls, according to Dr Apil Gurung from the University of the Sunshine Coast.

Even as a primary carer, it’s unlikely you’ll be able to spend 24 hours a day, seven days a week with your parents, so experts recommend looking at changes you can make in their home or yours to decrease the risk of falls. That’s something that can be done even before you take on the role of carer.

Dr Gurung says the chance of fall can be reduced quite simply by replacing any slippery surface and stowing away any potential trip hazards such as cords, shoes and toys. An occupational therapist can also make a more thorough check of the home environment to ensure it is safe for the elderly and to suggest what modifications may be required.

These modifications could involve installing handrails in the shower, bath and around the toilet and even replacing tiles or wallpaper that may cause issues for people with dementia who are battling with a loss of proprioception – the ability to sense one’s own body’s movements.

Dr Gurung also suggests ensuring your parent uses the walking aid best suited to their needs; a physiotherapist can advise you on this.

“Inappropriate walking aids may contribute to falls which may be detrimental to their health and well-being,” he says. “Thus, the right aid needs to be confirmed prior to use with a health care professional like a physiotherapist.”

The emotional impact of being a primary carer

Caring can emotionally exhausting, as well as physically taxing – a burden on carers that’s being recognised this week through National Carers Week and the Embracing Carers initiative.

The global initiative, led by pharmaceutical company Merck, focuses on increasing awareness and discussion about the often overlooked needs of carers who are always putting themselves second. This year Merck has launched the Time Counts campaign, which encourages people to reach out and support a carer they know.

Speaking to Starts at 60 about the mental health effects of caring for a loved one, Merck spokesman Paul Lindsay says a carer’s life can become quite lonely, leading to a range of emotional challenges. In fact, an Embracing Carer‘s survey shows that nearly half of unpaid carers feel depressed, with almost three in five saying they need medical care/support for a mental health condition due to their role as an unpaid carer.

“They spend so much of their life dedicated to their loved one that 50 per cent of them are going through depression because they don’t understand that they’re not alone, that there’s a whole community of them out there,” Lindsay says. “They find they are so busy with looking after their loved one that they just don’t have time to access the resources that are available that make them understand that there is help out there.”

Part of this stress, Lindsay adds, comes from the financial issues some carers encounter when they reduce their working hours or give up work to care for a loved one. There is also often the cost of altering their home to create a safe space for the person they’re caring for.

Dr Gurung agreed, explaining that the likelihood of developing ‘compassion fatigue’ is common among informal carers who don’t have the formal training and coping mechanisms in place. This type of fatigue is caused by the combination of the physical and emotional impacts associated with caring for a loved one and can in turn lead to burnout and depression.

“Caring for someone involves a lot of patience, perseverance and hard work,” Dr Gurung says. “It is not easy being a care giver and one has to look after themselves too as it’s easy to forget about oneself while looking after others.”

There’s even more pressure on Baby Boomers who’re caring for their own children as well as their elderly parents, Dr Pond notes.

“This requires careful thinking through as a balance which preserves your own emotional and physical health may be hard to find,” she says. “And your own needs may not be clearly seen by either the younger generation or the older.”

Providing care in your own home

Moving your parent into your home is a big change for not only the elderly person but the whole family dynamic, particularly if you have a partner our spouse and children living with you. For this reason, Dr Pond advises giving it a trial run before committing completely.

The GP says it’s also important to be aware that your parent or parents’ health may decline more quickly than you anticipate.

“It’s worth developing a plan of care or advance care plan with your parent so that you are clear on what they would like ideally,” she says. “For example, at what point would they be happy to agree to nursing home placement, if they want to die at home or in the hospital and how much effort they want put into keeping them alive.”

Getting support as a carer

With a plethora of physical and emotional challenges involved in being a primary carer, it’s important to know there is help and support available as you tackle your new role. Merck’s Lindsay also encourages others to step up to support carers. Even little things such as dropping in for a cuppa or meal, going for a walk or taking on caring duties for the day to give the carer some time to rest, can be hugely helpful to a primary carer, he says.

“There’s a study which showed the replacement value of unpaid carers in Australia is more than $1 million per week,” Lindsay says. “So the economy can’t afford for these carers to burn out, this is why we need to take care of the carers. Indirectly they’re  looking after the economy as well as the people they love.”