Only the old know what it is like to be old.
We have all been children and teenagers, in the prime of life and middle-aged, and could all make a decent fist of helping to decide what the needs are of those age groups. But old age is something else. It is full of surprises for those who live long enough to experience it. The young have no idea.
We old people talk to each other about these unexpected, sometimes unpleasant, but occasionally pleasant, things, but rarely are the young interested long enough to take them on board. That is why I am anxious that changes to the aged-care system should have real old people at the centre of policy making. Aged care is simply too important to be left to the young.
I am sure there will be some ancients at the table, but I fear they will not be the sort of people whose independence has ever been threatened. They will be powerful old people. They do exist: people who are used to being listened to and having their input respected. They are probably still earning quite a lot of money, which most old people are not. They are not necessarily in touch with the average old person worried about separation, loss of independence (for themselves, partners and friends), dignity and privacy, and being bossed around until they are in their grave.
Nursing homes and dementia are what people focus on, but we need to think, too, about a relatively new phenomenon: one in four houses in Australia is single occupancy. Many people choose to live alone, especially women, most of whom have only had the possibility of this luxury of solitude since the 70s. Nathan Heller, reviewing sociologist’s Eric Klinenberg’s research in The New Yorker, says that “far from being a mark of social abandonment, the solo life tends to be a path for moving ahead, for taking control of one’s circumstances – and the ethics of senior care will change as a result.
“If Mom has lived alone, successfully and proudly, for four decades, is it socially responsible to move her to a home when she stops remembering to pay her gas bill? Or is it an offense against the person she has spent adulthood laboring to be?”
Nursing homes – where does one start? – need good, well-paid permanent staff, not agency people who don’t get to know the patients. The staff needs a good command of the language. People with hearing loss are often stressed out by accents. TVs must have turned-on captions. I don’t know what the needs of those with vision impairment are, but if the provision for them is as inadequate as it is for hearing loss, heaven help them. All rooms need to be colourful, airy and light. Bossiness, let alone cruelty, cannot be tolerated. Don’t treat that person with short-term memory loss like a child. He or she may be doing the cryptic crossword upstairs.
But what do I know? An occasional visitor’s experience is nothing compared to that of people actually living in nursing homes and of those who care about them and have known them throughout their lives.
One thing I do know is that everyone has to be pretty careful about who they lock up in secure wards. This kind of security has to be for strong reasons, not just because of a simple diagnosis of dementia. Deprivation of freedom must always be monitored and justified very carefully indeed.
I know there are excellent nursing homes and some brilliant staff. We need to be sure there are enough of them and that the excellence and brilliance is of the kind old people want. If these conditions were being met, I would not be hearing the stories I hear: not necessarily of cruelty or neglect, but of sad omissions and lack of human touches.
I want to know that people such as the wonderful South Australian activist, Heather Crosby, is right up there in aged-care planning submissions. Heather is 89 and as sharp, clever, compassionate and fearless as ever she was. She is just the person for the task of getting better care and amenities for the aged.
My readers have put up with my repeated complaints against the Coles supermarket near me, and others as well, which locked up the lightweight, shallow trolleys, which the old and disabled like to use, leaving the big trolleys unfettered by locks or requirement of coins. Discrimination, of course. Some of my readers proposed peaceful but strong action, but I discouraged this in favour of a Disability Discrimination complaint and because it might fuel Coles’ weird fantasy that old people were nicking the shallow trolleys by the dozen.
I am told that Coles now has a disability policy, and staff training about disabilities. We may take this as a win, I think. Learning about disabilities will do no one any harm, judging by the responses I got when first I began my little trolley crusade. But I wonder how any disability policy can countenance for a day the locked up trolleys, especially when the big trolleys are free.
Alas, the truth is that attitudes to disabilities and, indeed, to old age are full of contradictions, misunderstandings and stubbornness.