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.
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.
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.
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.
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.
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.
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.
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.
In response to Diane’s story;
I feel like your mum (and you) would benefit from Respite, and/or a nursing home. You have done wonderful things, but at the cost of your own life. It’s time to put mum into care and focus on you (and your husband). And I am hoping that you have a home care package for your husband as well.
Yours is a sad story – you’ve shouldered the burden way past what needs to be done. I think (and I hope I say this from a place of empathy) you’ve tried to save the world and its backfired a bit.
Nursing homes aren’t the horror places of old, I think your mum might benefit too – imagine being cared for by people who aren’t worn out! There are always lots of activities and fun times for people in nursing homes. And you would still be able to take Ukranian food into her.
I can’t speak for your mum – but I’d ask you to think: Would you expect anyone to stop their life to care for you?
I wish you all the best Dianne.
Hi Diane, like you I am a carer for my husband and my mother. My husband JM was diagnosed with stage 4 T Cell non Hodgkin’s lymphoma in 2010. He was given a 3% chance of survival from his second bone marrow transplant in 2011. Since then he is cancer free however the transplant that saved his life has left him disabled due the the damage to his lungs, bone density, scleroderma caused by chronic graft vs host disease. He is 45 now and I’m 50. We also don’t have a marriage I am his carer first. We have separate rooms as he needs a hospital bed. We get no funding or help for him. He’s too young for my aged care and is not considered disabled enough for NDIS. We were offered one hour of cleaning a fortnight.
In 2013 my father died of lung cancer. Mum was left alone so we moved her up here closer to us. She had her own place until 2017 when we had a granny flat purpose built for mum. She paid for the build. Mum has diabetes, degenerative disk disease her lumber region has collapsed with no disks left so bone on bone and severe nerve damage. Mum can longer stand for more than a minute she’s in so much pain. I had mum assessed in 2015 for a my home care package and she was assessed as a level 2. Since then mums condition has deteriorated, she is depressed and lonely, she is wheelchair bound mostly. Mum has around level 4 dementia which is getting worse. Mum has constant wounds that need full care. She can’t cook much or clean even having a shower or going to the toilet is a huge task for mum. We had mum reassessed in 2017 for a higher level and she was assessed as a level 3. However I have been in a battle for the package to increase to the level 3. Yesterday after months of assessments and run around mums package has finally gone up to the level 3. It’s still not going to be enough and mums needs are increasing.
My husbands condition is deteriorating, my mums condition is deteriorating and I’ve reached burnout where I cry all the time and am not coping. I have a chronic pain condition along with a buggered shoulder and hip from heavy lifting and from their falls.
Before my husband got sick I had a small business and was earning good money. My husband was working full time and earning good money. He got sick and we lost our home, our life, my business went bust in 2011 when his cancer had relapsed and he needed full time care. We struggled financially, we’re forced into selling our house for $55,000 less than we paid as it was just after brisbane floods and in the middle of the GFC. So we were homeless with a $55,000 debt. Luckily my husband was considered terminal and we were able to collect his life insurance. We paid out the debt and went west of brisbane until we could find a house we could afford that would see us through. He survived and it will be 10 years since his diagnoses in May 2020. I am scared what will happen to me when they both go. I have started working as a community carer to earn a bit more money so we are not constantly struggling. I only hope I will be fit to work when this is all over or if I’ll join the queue of over 50’s women who can’t get a job and end up homeless. I am ten years behind on super so I will not have a self funded pension as I had planned. I’ve been told to just put mum into care yet when she had respite for three weeks she hated it, her wounds were infected even though I’d sent her down with them near healed. She feels she is being forced into a nursing home when we used her money to purpose build a unit she could spend her old age in. I believed we would get the funding we needed to keep mum at home. After all it’s far more expensive for the government to have her in a facility. I feel like I’m on a merry go round asking, begging for help but I only get advice that doesn’t pan out in real life but nobody will stop it so I can get off. Being an unpaid carer is not something I would recommend, in fact I tell people who ask for my advice to get them into a care facility ASAP so you don’t get stuck losing decades of your life and losing your ability to have a decent old age yourself. The physical and emotional toll it has on the carer is too high.
Diane – i know how much care and devotion you have provided and the sacrifices you have made – your Mother is fortunate to have your love and support. .