Adjusting to Life as a Carer for Someone with a Disability or Illness

Peta Miller
Jul 19, 2018
min read
Person with a walker

A workplace injury, terminal illness or road accident all take a significant toll on the person suffering the injuries, in more ways than one.

Often, though, the people that find it hardest to adjust to life after an accident are the family and those that become a carer for their loved one after the life-altering event.

Research from Carers Australia reveals that in 2015 there were 2.7 million unpaid carers in Australia. More than two thirds of primary carers were female.

Similar UK research shows that there are 1 in 8 adults (6.7 million in total) acting as carers in the UK and that by 2037, it's anticipated that the number of carers will increase to 9 million.

That’s a large proportion of our community. So what is like to adjust to life as a carer when your family member or friend suffers a traumatic accident and serious injury?

Carer pushing lady in wheelchair
Over two thirds of carers are women, like Rachel, pictured here, whose life changed forever when her daughter became a quadriplegic. Source: Carer Gateway

Who qualifies as a carer?

The role or job as a carer is often thrust upon us with little warning or any training on how to manage this new kind of existence.

Under the Carer Recognition Act 2010, a "carer" is someone who provides unpaid personal care, support and assistance for someone (often a family member, friend or neighbour), such as a person who is frail and aged, or has a disability, a mental illness, a drug or alcohol addiction, a long-term health condition, or a terminal illness.

This does not include volunteers for community organisations or people are paid to care for someone or people who care for someone as part of a training or education role.


Grief has no timeline: reactions to becoming a carer

As a family member or carer, it is completely understandable that you might need help managing and adjusting to the changes in your life.

According to the Carer Gateway website, many people who experience a partner or relative suffering a serious injury that requires them to assume a level of responsibility and care, find that the physical and emotional exhaustion catches up with them pretty quickly. This can mean they feel generally unwell or simply tired a lot of the time.

If you have been the position where you suddenly became a carer, you may feel intense sadness, loss, guilt, and stress as well as anxiety about what the future will hold. It is common for the grief to last for some time, possibly even years as you adjust to the "new normal" – there’s no fixed timeline for grief.

When media personality and TV legend, Kerr-Anne Kennerly’s husband, John, slipped and fell off a balcony verandah, which left him paralysed from the neck down, she described the experience as confronting.

"I hate this new life to be quite frank. I hate it. It's just awful," she told TV host Melissa Doyle.

She also described the many and varied roles she began to play as a fulltime carer for her husband and the massive effort involved in helping to manage his life on a daily basis.

"I need to be a physiotherapist, an occupational therapist, I have even cooked,” she joked. “I'm starting to learn all those skills, from the slings to the medication and how to put his gloves on at night. It is pretty time consuming, and it will get more so”, she reported to Sunday Night.

The physical and emotional demands of this kind of role mean that carers are extremely vulnerable to stress. But they often feel they have little or no choice in taking on the role in the first place which can lead to resentment or a feeling of being trapped.

The demands of the job can also lead to conflict, social isolation, and frustration and puts enormous pressure on family relationships and friendships. This can, in turn, result in health problems such as increased heart rate or breathing difficulties, insomnia, high blood pressure and even more serious stress-related illnesses such as heart disease, chronic fatigue or mental health issues.

According to Carers UK's State of Caring Survey, 72% of carers responding to said they had suffered mental ill health as a result of caring and 61% said they had suffered physical ill health as a result of caring.

That’s why it’s critical that, as a carer, you don’t forget to look after your own health and wellbeing. If you crash and burn, you won’t be able to care for your loved one which places a whole new level of stress on the position and situation.


Work and finance: can I still keep my job?

It’s common to be worried about your financial situation changing along with the usual habits and routines of your life.

If you are able (or decide) to continue working in paid employment, you can reap the benefit of earning additional income and contributing to your superannuation balance as well as engaging in purposeful pursuits that lead to independence, strong self-esteem and important social connections during an otherwise challenging time.

Whether it’s part-time, fulltime, casual or contract work, employment can act as a break or respite from the rigorous expectations and responsibilities of the ‘caring’ life although it’s not for everyone.

Speaking with The UK Telegraph, Brenda Thompson-Murray, 43, who gave up a senior role working for a charity, described the transition to being a full-time carer after her mother suffered a stroke, as a daunting one.

After spending the first few months balancing her job and caring responsibilities, the physical and emotional toll caught up with her and she chose to take redundancy during a restructure.

A few months into full-time caring, Brenda reported having a particularly tough time.

“I felt broken because I felt like I’ve worked all these years, all my life and now I’ve got nothing to show for it. I was scared. I knew I’d made the right decision but where did that leave me now?”


Despite the obvious challenges with giving up work or other social aspects of your life, according to Better Health in Victoria, carers have reported that there can be many rewards to caring including:

  • the satisfaction of knowing you have helped someone who needs you, allowing them to improve their quality of life
  • strengthening the relationship with the person you care for
  • the opportunity for personal growth and to develop new and different skills
  • proving to yourself that you can meet new challenges, and
  • appreciation from the person you care for and acknowledgement from family and friends.

The decision to work or not to work and how to approach your role as carer is a tricky one however there are plenty of support services available for carers if you need to discuss the range of issues and challenges you face as you adjust to your new life as a carer.

Here’s a list of the services and organisations you can contact for assistance:

Support and services for carers in Australia

Carers Australia (Federal website)
Icare (Insurance and care for the people of NSW)
Carers Australia NSW
Carers Australia Queensland
Carers Australia Victoria
Carers Australia SA
Carers Australia WA
Carers Australia NT
Carers Australia TAS
Australia Department of Social Services (Disability and Carers)
Aged Care (Contacts for Carers)

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