On some mornings when sleep has been short or fitful, the prospect of something good to eat is the thought that gets me out of bed. Doing my morning exercise takes more willpower on those days. There were years when every morning was like that. My first thought would be, “What is for breakfast?” I was more overweight then. I often ate as a substitute for rest. My tasks in those days were often dictated by the needs or whims of others. I had trouble telling the difference.
It is a measure of how backward our industrial societies are that those who are carers for dependent ones — the disabled, children, the frail elderly, those birthing, those passing on — are under-resourced, stressed and neglected. It’s usually (not always) women’s work, undervalued, rarely paid.
One of the reasons I became a doctor was that I wanted my skill in caring for others to be respected, structured and better paid. A junior doctor’s seventy-hour work week (on twenty dollars an hour) offers better working conditions than most mothers or carers get. It doesn’t feel like that when you are sleeping with your pager in the hospital on-call room but it’s true. “Everything is easier after being a parent,” I would murmur to myself, feeling aged in my sleep-deprived, overfed body.
Carers give themselves less of everything — time, rest, money. In my work nowadays, I sometimes have to tell a patient, “You must be the centre of your own Universe, otherwise nothing will work.” I say that to clients when I can see that their health problems won’t get better until they prioritise their own needs. I’ll say that to someone who needs to focus on herself, listen to her own needs: physical, emotional and spiritual. Trying to look after a sick carer is hard because they can’t or won’t take the rest they need to recover. But the body will keep insisting. If they keep coming back to me, I’ll give it to them with their medicine, “The main way you will get better is to rest. The medicine won’t work without it.”
Providing care for a person or people you love is tough. Insidiously, the work undermines a care-giver’s self-trust and self-love. This is a danger inherent in the work itself — you have to deny your own needs and desires twenty times (or a thousand times) a day. But there’s also other people’s lack of respect and understanding for the work you do.
In the bush, where I live, it is at least a three-day commitment to go to see a medical specialist or have an important investigation done — like many types of x-rays, CT or MRI scans or special blood tests. For many caregivers, that is impossible to arrange. So a significant proportion of the patients I see with serious long-term disease, such as a cancer or heart disease that has gone beyond the point of being treatable, are carers who have people completely depending on them. They have literally sacrificed themselves.
When you are caring for a child, a frail or disabled person with chronic unmet needs or somebody who is terminally ill, you wake up with little sense of control of what you will do that day. Some of that grows a person up — parenting or caring for a dependent family member is a fast-track to maturity. But when the unmet needs are too severe, too persistent or too frightening in their potential consequences — when you’re caring for a teenager with schizophrenia who leaves the house and wanders in the traffic, for example — the caregiver’s levels of stress can become unbearable.
Aboriginal people in remote communities trying to care for the now middle-aged people whose brains were damaged in the petrol-sniffing epidemic of the nineties. The farmer caring for his wife who has been disabled by a progressive neurological disease—being at home with him is the one thing that makes her life worth living. The father of an autistic son who is becoming more unruly and physically challenging as puberty hits. These are some of the patients I have seen, and they all need and deserve more respect and more help.
In the last thirty years in Australia I’ve seen progress. There has been important research highlighting carers’ conditions and there is a small, almost token benefit paid to carergivers in some circumstances now. The findings of the research show that there needs to be a major shift towards looking after those who are looking after the needy ones. A 2014 study found that over one third of those who were carers for dementia patients felt that they might commit suicide in future. Caring institutions are thin on the ground, even in wealthy countries.
The next time you see someone who is overweight or underweight, exhausted, consequently scattered, please bear in mind that she or he may be carrying a bigger burden than what you can see. Respect them. Encourage them, if you are in a place to do so, to take care of themselves.
I am lucky to be one of those carers who has a respected and well-paid job. I am even luckier to have my bowl of homemade muesli and the time to do a downward dog before I set out for that job. Caregivers, too, need all kinds of rest, recovery and nourishment.
Thumbnail pic: Nunawading University of the Third Age Bellydancers by Cuddy Wifter