Every day, 2.7 million Australians provide unpaid care for a loved one. Friends and family give up activities they would otherwise be taking part in. They see friends less often. They cut back on work. They accept these sacrifices without question as part of caring for their loved one.
Though they make up 12 per cent of the population, we rarely hear from family carers. We don’t often hear about the difficulties they face, the toll caring takes on their health, their finances, the impact on their relationships.
Diane Ohlmann cares for her mother and former husband at home, and has shared her story with HelloCare. She speaks openly about the difficulties she has faced, and the burdens it has placed on her life. Yet she feels proud her loved ones have been able to stay at home in her care.
Ms Ohlmann hopes that by sharing her story she can help to create greater awareness of the sometimes harsh realities of caring for a loved one. She encourages other carers to speak out, and to seek help and support when they need it.
Diane Ohlmann’s story
I worked 40-hour weeks over four days to support my folks financially from 1994 to2014. I worked two jobs, and extra.
l made sure weekends and every Wednesday (Mum’s market shopping day) were available to provide support and respite for Mum.
I was senior in my profession back then but readjusted work from being an employee to a contractor until l became a ‘liability’. Mum was in her early 80s and Dad mid-80s at that time.
Dad became high care after his third quad triple heart bypass in the late 1980s, and passed away in 2008.
Paul and l moved in together with mum officially in 2009, when l was recognized as a full-time carer. We were a couple then. l officially became a carer with Centrelink system that year. Unofficially, l was a carer for Mum and Dad before home care packages existed.
My Mum is 90 per cent wheelchair dependent. She had cardiac failure with chronic obstructive pulmonary disease (COPD) so is on home oxygen. She also has kidney failure and osteoarthritis and post-traumatic stress disorder (PTSD) from the war.
Incontinence was brought on from a fall while in hospital. She requires changing upto 4-6 times a day.
She has depression from losing dad.
So focused on caring, we neglected our health
My husband Paul had his own business and worked another job in order to support us and help me pay for the Carer Package and any additional services or needs. However, he collapsed with kidney disease, pyelonephritis, and respiratory failure on 22 October 2014. He had been unwell for months, and I eventually found him unconscious in bed that day after returning from a doctor’s appointment.
We were so focused on Mum, and making ends meet, that we didn’t stop to look at our life and health. Big mistake.
Paul was taken into hospital and apparently if he had collapsed and was unconscious during the night and l did not check on him, Paul would have died. His condition could have killed him within hours.
The hospital reported our GP for misdiagnosis but the damage was done.
From that date, we lost the business.
The “fallout” from caring too much
Paul lost his family because we were living with mum. Because Paul chose to look after mum – his parents at the time were fit enough to care for themselves – his family cut him off, so much so that they had not spoken with Paul since 22 October 2014. His dad passed away in October 2018. I found out by default a few months later.
Paul was close to his dad but my folks were so unwell. I never stopped him visiting them. They did not understand the needs of older ones. They could have visited from Black Rock to Pascoe Vale. The didn’t want to, and l’m paying the price now. He lost his family as he helped me care for my parents.
Carers should never marry, is my advice. The fallout is not worth the pain.
Private carers help Ms Ohlmann ensure her mother’s needs are met
We had carers from a home care provider come in 7 hrs a week until 2014, which was a bad year. Mum was diagnosed with COPD, which meant carers had to know how to use home oxygen.
Since 2014, l have been paying for private carers who are approved by doctors. But that has led us now to the brink of bankruptcy. With them, l get time to have most of mum’s needs met.
One carer provides spiritual help. One helps prepare the Lithuanian cooking dishes Mum enjoys. The other looks after craft activities.
As l am not well with pain issues – I have injuries in my back and left shoulder – l need help, but more than half my pension goes toward mum’s needs. While the carers are here, l can attend to Paul’s needs.
With mum’s needs increasing, and no family support, especially after losing my sister to cancer last year, debts have overwhelmed Paul and I.
Caring cost her the marriage
When you care for two loved ones under the same roof, there’s a silent competition for love and who gets most care.
It’s impossible, at least from what l experience and hear, to keep a marriage.
Each hospital admission for mum meant l was dividing the time as best l could, but Mum was often in delirium with each admission, as part of her UTI and COPD.
I am the only one there for mum. I have a friend who cares for Paul, when l’m at the hospital but it’s not the same.
Eventually the relationship broke down.
l give, but at every step lose everything.
26 years of marriage are gone. We sleep in separate rooms. I care for Paul as it’s my fault he has no one, plus l love him – but we are not really married. It’s another cost of caring, the emotional cost.
“I feel proud”
Yes, l can look at myself in the mirror before bed and feel proud my family are home and safe.
But I am up every single night wondering ‘Will l have a roof over my head once mum’s gone?’ and ‘How will l be able to care for myself?’
I have been dismissed from a pain clinic because I was not attending sessions. I have to pay to have a carer at home to attend. I can’t leave Mum.
“Isolated and lonely”
All carers are isolated and lonely. A doctor’s criticism of having ‘carer’s anxiety’ when l leave mum in respite, which is very rare, but when you care for someone 24/7, wouldn’t we all worry?
Carers Australia or Lifeline are wonderful resources, but how many are carers who understand what we go through?
I have debt collectors on my back every single day.
Having to write this all down is hard.
I must get mum to bed now and attend to Paul.
I want to help others so they will have a future, as l do not have one. Maybe I can spare others going through the same problems.
I was once educated and married, and thinking we would eventually end up together and continue life. Now l can barely communicate with the world. I’m living in a constant fog.
Diane the paramedical therapist and teacher no longer exists, but the carer does.
Caring does come with risks.
Many past carers easily forget the journey. Many, like me, do not.