Wearing out our caring
It’s been an awful day in Sydney, a ferocious wind howling around the corners of the hospital. We have been to see a rheumatologist because my mother, who is 101, is convinced she has a dislocated shoulder, despite X-rays that show she doesn’t. The specialist reassures her and gives her a corticosteroid shot in her shoulder joint.
Afterwards I push her in a wheelchair to the car park. It’s not easy. When we get home, she is trembling. She looks at me and says, “I am dying.” Her words are like a punch to my chest. And it gets worse.
Not surprisingly, my mother is frail and anxious, but she is lucid. A fortnight later, her blood pressure goes off the scale. “I am having a stroke!” she says. I call an ambulance. The paramedics want to take her to hospital, so off she goes for what will be a three-week stay. I visit her every day, the only family member allowed.
Then she goes to a rehab hospital for a further three weeks. I visit her every day, the only family member allowed. Each day I stay until she has dinner, then I put her in her nightgown, take her to the toilet and put her into bed.
Mum might be the one in hospital but I feel like a suitable case for treatment.
While the rehab specialists work to balance her medication and salt levels, Mum has hallucinations. As a specialist explains, low sodium levels, or hyponatremia, may cause confusion and fatigue. She is certainly confused. She tells me she visited outer space the previous night, later she goes to New Zealand. She thinks one of the nurses is a drug addict. It is very confusing, and confronting.
I am starting to have bouts of insomnia. I am constantly on the verge of tears. I know I am in trouble.
According to the Australian Bureau of Statistics, over the past two decades the number of people in Australia aged over 85 has increased by more than 117 per cent. But there are fewer people to care for them, in part because the participation of women in the labour force is increasing and there are more single-person households.
I have been my mother’s primary carer for six years. I live in her house and visit my house on the other side of the city only once in a while to clear away the spider webs. My hope is my mother will die, peacefully, at her home, in her own bed.
Every morning I creep into her bedroom to check she is still breathing. It makes me nervous; my days are consumed with her health and wellbeing.
I left my job to care for her, but I was very naive about the new job to which I had committed. I thought I could easily handle being her carer. In reality, caring for an elderly parent is tough. It takes infinite patience, a quality I have in short supply. So, I have had to learn to take it one step at a time, one day at a time.
We are always visiting a doctor of one kind or another – the GP for blood pressure, urinary tract infections, gut and bowel upsets; the eye doctor for retina problems; the hearing specialist; neurophysicians for dizzy spells. It is an endless dance of getting Mum into my little car and wrangling her walker or wheelchair into the boot. These are our only outings.
I try to look after myself. I have a lovely little dog who walks with me every morning. I read a lot, listen to the radio, talk on the phone, write occasional academic papers in my room. I befriend a few neighbours. I organise special birthday parties for my mother, small luncheons and tea parties to which we invite some of her friends.
But when, seemingly inexplicably, the tears start to flow, I cast about for help. I am in such isolation with my mother that I scarcely know what my friends are up to. I am lonely, intensely so, and a good walk or occasional swim are not going to solve the problem. I have taken advice about help in the house. A cleaner comes once a fortnight to vacuum and mop the floors, clean the bathrooms and dust. A chap comes regularly to mow the lawns. During the Covid-19 lockdown, I shopped online and collected my order in the basement car park of the local supermarket.
Aviva Ziegler, acclaimed Australian documentary maker, was the primary carer for her mother, Lisl, for many years before her mother was admitted to an aged-care residence. Ziegler says her mother was frail but lucid, like my mother, and she was troubled by her fading sight.
“I was very anxious most of the time,” Ziegler says, “and I was disturbed because my mother was very needy. She really suffered from her loss of independence. I was anxious because I felt I had to be aware of what was going on all the time. I could not relax if I went to the theatre or even if I went out shopping during the day.”
For Ziegler, like me, the commitment of caring started to be felt as a burden. At times it has certainly weighed on me as a thankless task. Not that my mother fails to thank me; she does every night when I tuck her into bed. Guilt that I experience such feelings begins to assail me. Every day I feel I have a debt to my mother that I must repay. She has supported me all my life, she has allowed me to be who I am. The time has come to settle the debt. However, there is a fine line between dedication and martyrdom, between selflessness and self-preservation. It is a tricky balance.
Two years ago, the Royal Commission into Aged Care Quality and Safety released a background paper acknowledging research showing “a clear association between unmet support needs, carer mental health and wellbeing, and the sustainability of the caring relationship”.
Of carers who support older Australians, 64.7 per cent report multiple unmet support needs. Carers describe isolation and emotional burden. Half believe their mental health had been negatively affected by caring, and 40 per cent report a need for mental health support.
As the report says, the caring role can impact on the time a carer has available to take part in the community and interact with family and friends. Carers say they need more information and accessible, affordable services providing practical and emotional support.
Notwithstanding the reported need for help, the overall proportion of carers who use available support offered by official agencies tends to be low and, even then, use is often delayed. Of those carers surveyed, 35.1 per cent were not satisfied with or were unsure about the range of organised services available to assist with their caring role, and 25.4 per cent were unaware of the range.
I have plundered all the official and unofficial websites focused on aged care. They may well contain all sorts of useful information and support, but who would know? I find them grey and uninviting; they depress me. I am so focused on my mother’s and my own welfare that I avoid all that officialese.
Despite all the official goodwill in the world, despite all the reports and surveys, it is my experience that what carers need and want is human consolation. It is not easy to come by in this preoccupied pandemic world.
This article was first published in the print edition of The Saturday Paper on Apr 17, 2021 as "Wearing out our caring".
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