Carers are often portrayed as saints and martyrs but this is not how Angela thinks of herself even though she spends 60 to 80 hours a week looking after her 90-year-old mother. “I feel I’m doing something meaningful with my life,” Angela told me. “She’s my mother. I know her better than anyone else.” It’s not that Angela had nothing meaningful to do before she became a full-time carer. She was a nurse. But several months ago, at the age of 54, she gave up nursing when her mother’s frailty and dementia required 24/7 care.
It would take a book to tell you what Angela has sacrificed to keep her mother at home, a seven minutes’ drive away from Angela’s place. As she told me about her life, I couldn’t help but think “saint,” “martyr”, her denials notwithstanding. She’s sold a little investment property to keep herself financially independent, and once she hit 55 she began to draw down on her superannuation. A reverse mortgage on her mother’s home has helped pay for private care four nights a week when Angela gets a break. There’s 16 hours of government-subsidised day-time care and her brothers pitch in 12 hours between them. But Angela is often called out on her three nights off, and she’s with her mother every day. By the way, Angela’s married to a saint. There’s that word again.
Caring for an elderly parent or spouse, especially one with dementia, can be distressing, depressing and isolating. Depending on the hours involved it can take a toll on a carer’s health and finances. But that’s not the whole story. As Angela has found, it can also be meaningful. Caring is what a good life’s about; and being cared for when we are sick, frail or needy should be nothing to fear or be ashamed of. “Families should look after families,” Angela said. “And as a society we should be looking after vulnerable people who can’t look after themselves.”
Too many old people, she thinks, never want to show their vulnerability because they fear being shunned. “Are we really so afraid to be seen as vulnerable and not in control, do we think so little of ourselves and the love meaningful people have for us, that we have to go into an institution because we ‘can’t do it’ to our families?” she asks.
I’ve been thinking about this issue of caring ever since I read Lynne Segal’s book Out of Time: The Pleasures and Perils of Ageing. In it, she questions the emphasis western societies place on “independence”, and the particular dread of being dependent in old age. Many old people – or people thinking about a future old age – fear becoming a burden on their family. But Segal argues that being dependent, in one form or other, is part of the human condition. “We are never truly the self-made, independent creatures our culture likes to celebrate….”
Segal gives several examples of people who found caring for parents brought them unexpected fulfilment, even joy. “The last ten years: they were our best,” writes Elinor Fuchs in Making an Exit, a memoir about caring for her mother who had dementia. Judith Levine, always a reluctant daughter to an overbearing father, writes in her carer’s memoir: Do you Remember Me? A Father, a Daughter and a Search for Self, of warily beginning to love her father again. Most moving and confronting on this topic was the brilliant short story I recently read – Tenth of December – by the celebrated American writer George Saunders. A man with a terminal illness decides to kill himself in order to spare his wife and adult children the burden of having to care for him. But in the end, after an extraordinary set of events, he is happy to be saved. He realises: “Why should those he loved not lift and bend and feed and wipe him, when he would gladly do the same for them?”
But it’s so much easier to make caring the core ethos of our lives – rather than, say, personal fulfilment or economic gain – if we live in a caring society. By that I mean a society with a government that provides family carers with the support, resources and payments they need. It’s well-known women provide most of the care, and the financial sacrifices Angela has made are not unusual. New data by CEPAR’s Rafal Chomik, presented at a recent COTA NSW forum, Women, Work and Care, shows just how gendered is the sacrifice. A typical 20 year-old man who’ll work till 67 could expect an annual retirement income of $47.6 thousand (including super and pension). But a woman with a typical work pattern that involves three years off for child-caring, followed by periods of part-time work when children are young, and later when parents are old, would retire at 67 with $34 thousand a year of super and pension, an outcome the federal budget has since worsened.
No, it wasn’t a good budget for carers, particularly due to the Carer Payment, like the Age Pension, being tied from 2017 to increases in inflation rather than wages which means its relative value will decline. When asked what she needed Angela said more hours of government-assisted help and better trained carers skilled in dementia. With greater government emphasis on home-based care, it’s imperative families are not so over-burdened that the very words “caring” and being “cared for” become synonymous with dread rather than love.
What’s your view – or experience – of caring? Do you dread be cared for? Please Comment. But this week there may be a delay in your comments going online.
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