Ties that bind: when loving someone turns you into their carer

If you’re feeling the weight of caring for a parent, partner or friend, these are the best resources to access professional help and take some of the load off your plate.

By Margaret McKay

When love becomes duty

As you care for your partner, parent, or other friends and family, the deep bonds of love and connection blend with duty. A shared history or DNA now intertwines with an overwhelming weight of responsibility.

As days turn into months and years, the demands of caregiving can become exhausting. Balancing your personal life while ensuring the wellbeing of the person in your care becomes a complex juggling act. Recognising signs like your own potential burnout, increased medical needs of the person you care for, or financial strains can be pivotal indicators that it’s time to explore options beyond personal caregiving.

What to do when casual help becomes commitment

You used to drop by for coffee and chats for support. Over time, you gradually started helping sort out the medications, what to take when. Then you wanted to be there when the medication was taken, to avoid those occasional slip ups. Pretty soon, you were making extra food in your own home. The hours blurred – medications, shopping, meals, a bit of housework, driving to doctors and allied health professionals.

Suddenly, your casual help and care has become a lifetime commitment.

Your own life has been put on hold and you feel stuck. Now it’s you who would relish some quiet companionship, a coffee and a chat with a friend.

The silent sacrifices: when your life becomes theirs

You postponed job interviews, cancelled your vacations, and set aside your own aspirations.

But how do you reclaim your life without guilt? You’re not alone of course, and it’s essential that you take care of yourself in the process to avoid the burnout that can accompany caring for others.

Millions of unpaid carers know your dilemma. Here are just a few unsung heroes:

Grace has been caring for her elderly mother with dementia for over two decades. As the dementia worsened, Grace gave up her dream of pursuing higher education and a career in order to provide round-the-clock care. Grace’s personal aspirations took a backseat as she prioritised her mother’s wellbeing. Her sacrifice will unfortunately mean very little superannuation for Grace in her senior years.

Juan is a devoted husband who’s been caring for his wife for more than 30 years. He left his job to become a full-time carer when his wife’s multiple sclerosis became advanced. She required daily assistance, transport to medical appointments, and emotional support. Juan’s sacrifice of financial stability and career progression shows the incredible dedication of unpaid carers.

Lena’s daughter was born with a severe disability, requiring constant care and attention. Lena put her own dreams of travel and personal growth on hold to ensure her daughter’s quality of life. She navigated the challenges of balancing caregiving with self-care, often feeling isolated and exhausted.

Michael cared for his ageing father who had Parkinson’s disease, until his father’s passing. Michael’s sacrifice extended beyond physical care. He also dealt with emotional strain, financial constraints, and missed opportunities for personal development. His commitment to his dad came at the cost of his own family when his marriage broke down.

Read about Citro writer Mitch Gibson’s first hand experience caring for his mother after an unexpected osteoporosis diagnosis.

Caregiving from home

According to the Director of the National Centre for Health Ageing in response to the Royal Commission on Aged Care Quality and Safety, “80% of Australians want to be at home as they get older, and thrive at home as successfully as they can, for as long as possible. Baby Boomers clearly are going to want to stay at home as they get to the point of requiring more care.”

How to incorporate professional caregiving

If your loved one’s condition has gradually worsened, and you can no longer manage issues like heavy lifting, incontinence, and advanced dementia, it’s time to make a change. Even though your compassion is as great as ever, the time has arrived to incorporate compassionate professionalism. Here’s where to get help before burnout strikes:

Carers Australia is the national peak organisation dedicated to improving the lot of Australia’s unpaid carers, by advocating for carers and lobbying government for improved policies and services. Each state and territory has its own office, or you can call Carer Gateway on 1800 422 737 for carer support services in your area.

Carers Australian Capital Territory

Carers New South Wales

Carers Northern Territory

Carers Queensland

Carers South Australia

Carers Tasmania

Carers Victoria

Carers Western Australia

The Commonwealth Home Support Programme (CHSP)

CHSP works with family and friend supporters to maintain a loved one’s independence rather than doing things for them. It’s designed to help older Australians access entry-level support services to live independently and safely at home.

The person you are caring for will need to undertake a simple assessment, which can be accessed online initially, and a means test to determine financial eligibility. The range of support is quite extensive and flexible to suit individual needs, and may include:

  • Personal care such as bathing, hygiene, and grooming
  • Nursing care to monitor medical conditions
  • Therapies, such as podiatry and physiotherapy to help to maintain mobility
  • Nutrition in the form of meals and food preparation
  • Help with specific impairments or incontinence
  • Home liveability, with cleaning, laundry and chores
  • Home or garden maintenance
  • Modifications in the home, including disability aids
  • Transport assistance for appointments and community activities
  • Social outings and interaction to stay connected with the community
  • Day or overnight respite

Home Care Packages (HCP)

HCPs are designed for older Australians with more complex care needs and can be accessed at My Aged Care or by phoning 1800 200 422. HCPs can provide support beyond what the Commonwealth Home Support Programme can provide. Read more about how Home Care Packages can help the people you love.

4 levels of HCP meet different needs

Below are the different levels of care and the 2024 amount paid by the Australian Government (increasing annually)

Level 1 – basic care needs $8,750

Level 2 – low level care needs $15,250

Level 3 – intermediate care needs $33,500

Level 4 – high level care needs $50,000

If your loved one’s needs change, they may have entitlements under the National Disability Insurance Scheme (NDIS). Phone 1800 800 110.

What about when I am older and can’t care for my disabled child anymore?

For parents who care for their disabled children and worry about what will happen when they are too old or no longer around to provide care - you might consider setting up a Special Disability Trust. This trust is designed to assist immediate family members and carers to make private financial provision for the current and future care and accommodation needs of a family member with severe disability.

The trust attracts means test concessions for both the person setting up the trust, and the recipient. For more information, contact the Services Australia Special Disability Trust Team or phone 132 717.

There’s support for young carers too

There are many young carers who are often unknown, unseen and unrecognised. Carers Australia started the Young Carers Network to support carers aged up to 25 years, and the Young Carer Bursary Program was subsequently established to assist young carers with funding support for education.

Who cares for the carer?

All levels of government recognise that if carers are not carrying the load, then it will fall to the government to do so, adding stress to already inadequate resources.

Training facilities and support for home carers is available through the government’s Carer Gateway and includes:

Carer Payments you may be eligible for

Last and by no means least, you, the carer, may be entitled to financial assistance to alleviate your own personal stress. For an overview on your potential entitlement, the Australian Institute for Health and Welfare (AIHW) provides guidance. Remember, you are doing the government a favour by keeping one more person out of residential care.

Firstly, check if you have an entitlement for a Carer Payment, and if so, you should not hesitate in applying. It’s there for people like you.

All these services and supports aim to empower individuals to age in place while receiving necessary support, and to alleviate the stress and workload of family and friend carers.

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