Caring for carers

old-man-walker-carers
Old man with walker – dreamstime.com

He wakes from the slender sleep of the hyper-vigilant to hear the front door close. He slips out of bed, quickly dresses and walks outside, down the garden path and through the front gate. There’s Mother, dressed in a smart suit, best walking shoes, hat and handbag. A suitcase sits beside her on the footpath. It’s 3am and a crescent moon slips between clouds as if to say ‘she’s over here’.

“Mum, what’s going on?”

“Bob’s coming to pick me up. We’re going on holidays.”

Some people would recommend you remind Mum that Bob’s been dead since 1989 and she needs to come back to bed.

The hyper-vigilant son puts his arm around his mother’s shoulder.

Change of plans, Mum. Maybe tomorrow.”

He picks up the suitcase, expertly manoeuvres Mum through the gate and coaxes her inside with promises of chocolate muffins and a glass of warm milk.

After he’s helped Mum get undressed and back into bed, he stops by his son’s bedroom. The doona has slipped off the bed where the six-foot son with a mental age of eight sleeps the sleep of the just. He covers him up, gently closes the door, sighs deeply and goes back to bed.

His wife, gently snoring, arm flung over her eyes, sleeps the sleep of the day shift. He’ll sleep in and she’ll be in the kitchen, making sure Mum doesn’t set fire to the house, leave the taps running or wander off outside, looking for Bob.

An extreme case maybe; fictional, probably. But a fair picture of a night in the life of what’s known as a ‘co-resident primary carer’.

Carers Australia trots out a huge figure – $60.3 billion – to describe the replacement value of what carers, their partners and significant others contribute to the welfare of the nation. There are 2.7 million people in this country who care for people who, to one degree another, struggle to take care of themselves. Carers include the parents of adult children, children of aged parents, partners of disabled people and a range of carers who do not fit any of those categories.

You may wonder where this subject came from, and unless you are one, you probably got through the week without knowing it was dedicated to Carers. The Story Bridge was lit up for the occasion and various organisations held conferences, functions, picnics, and other social events where carers could meet and mingle.

The parents, partners or significant others who look after a disabled adult at home are saving the welfare system a small fortune. True, they may be getting a Carers’ Pension, Allowance or Supplement, but it is chicken feed compared to the cost of, say, institutionalising a wholly dependent person with a disability. So $1.2 billion a week is what the government would have to find if the 2.7 million volunteer carers threw up their hands and said ‘Stuff this – I want a life.

Sure, there may well be people who have made sacrifices to care for someone and at some stage withdraw their support. But clearly most people who have accepted the role do so with absolute commitment.

It is estimated that carers provided 1.9 billion hours of unpaid care in 2015. Carers Australia says the estimated replacement value of unpaid care equates to 3.8% of Gross Domestic Product, quoting a 2012 Deloitte Access Economics study and an Australian Bureau of Statistics report.

Of the 2.7 million carers, 770,000 are primary carers who provide the most informal assistance to another individual.

In 2012, 38.8% of primary carers reported spending 40 hours or more per week caring, while 19.5% spent between 20 and 40 hours.

Of the 1.9 million described as ‘co-resident carers’, 45.5% were the partners of the person they cared for. Another 20% cared for a parent, 23.4% cared for a child and 4.2% cared for a sibling.

If there’s a word that describes the combined experiences of carers, it is frustration. It can be infuriating when friends and even relatives just don’t get it. They know you are caring for a parent with dementia, they know your 26-year-old son has a mental age of eight and by all reports will not improve any time soon. But they don’t empathise, don’t offer to help and may even choose to express survival of the fittest notions.

“She ought to be in a home, your Mum. You’ll wear yourselves out – it will wreck your marriage.”

While there may be more than a speck of truth in this unsolicited advice, it does not help. We all have misconceptions about people with disabilities and it takes an assertive person to dispel the myths.

A woman who cares for her wheelchair-bound husband after he survived a serious stroke submitted an item to a regular feature in The Australian called “This Life”. Ruth wrote this succinct summary, published in May 2015, about a little-understood condition.

When my husband says ‘Captain swimming underwater’ I struggle to guess what he is saying so earnestly. After many failed attempts, I ask if he needs to go to the loo. “Yes’ he says in desperation.  ‘I’ve asked you five times’. Aphasia – the scrambling and breakdown of language due to a brain injury – was a new word to me three years ago when he suffered and survived a big stroke. I did not know this could happen to someone. I did not know that he would never again use my name, or anyone else’s, for that matter. I have learned that his intelligence is intact, that he knows everybody who is familiar to him and even the cricket score but he can rarely convey the simplest of phrases. His favourite daily expression is ‘It’s maddening’. It is indeed.

Carers are a mixed bunch – they include someone like Ruth, thrust late-life into the role of ‘co-resident primary carer’, a dizzying world of juggling hospital stays, rehabilitation, respite and daily chores for two people.

Others have been caring for a wholly dependent disabled child since birth. The most frequent cry for help as these carers age is “Who will look after him when I’m gone?”

Caring for someone who needs care is not always this constant or confronting. It may amount to reminding mentally ill adult children to take their medication, have a shower, and tidy their room. But it is a 24/7 commitment when anything can happen.

Professor Robert Bland of the Australian Catholic University says the caregiving role is a useful but limited description of the family response to illness. He reminds carers that the caregiving role can overwhelm other roles such as parent, spouse or sibling.  “Family members need to learn new ways of coping with the crisis, to find a balance between the demands of caregiving and meeting their own needs.”

He told a mental health carers’ conference organised by Arafmi and Aftercare that families do other things associated with protection, identity and resources.

“They provide a predictable and safe living situation for people who would otherwise be dependent on hospital, hostel, or the streets.  They keep order and routine, lend money when needed, and offer encouragement.  They persist, they remember, they open the door when you knock – unlike many mental health services that give up, close down, move on.  Families are open all hours and they’re there on the weekend.”

Yes, even at 3am, when a crescent moon slips between clouds as if to say ‘she’s over here’.

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