A paraplegic woman and her elderly carer.

A well-known and respected doctor has written to me about caring for his loved wife.  He outlines a compelling and human story.  With his permission I share with readers his account of the burdens and cost of caring. John Menadue.  

Lesley Russell writes clearly and informatively in her piece “Who cares for the carers?” (11 January 2018) She gives us the numbers and an analysis of who they are. She relates the findings of many studies of carers, how they cope and how they also try to look after their own well-being.

Perhaps readers with no experience of caring – I guess that that could apply to many of John Menadue’s readers, especially the younger ones (of whom I hope there are many) – our story might give Prof Russell’s information a personal perspective.

After many years of a deteriorating problem with the collapse of vertebrae, my wife, despite being actively supported by one of my middle-aged daughters while walking upstairs in our home, collapsed when a thigh bone snapped from thinning of the bones. The thinning (osteoporosis) had been caused by many years of low dosage ‘cortisone-type’ medication for longstanding rheumatoid arthritis.

We installed a (necessarily curved and expensive) chair-lift so that, on her return from hospital, she could get to bedroom and bathroom. (All at our own cost. We could afford it, though it badly dented our superannuation.)

Then, despite repeated spinal surgery to stabilise her spine, she had a ‘spinal stroke’, leaving her paraplegic. (You, dear reader, might not appreciate that paraplegia is not just the inability to walk. It also ‘knocks out’ the bowels and the bladder.)

A year later, after being cared for in an excellent spinal unit at one of our public hospitals, then care in a rehabilitation hospital, and finally care at an excellent aged facility, she came home to an apartment extensively modified – special bathroom, bedroom created out of part of the downstairs living area, hospital bed and special mattress provided, with electro-hydraulic hoist and commode, in addition to her electric wheelchair – some paid for by the federal government, some by the NSW government, some by us – and some items loaned ‘for the duration’.

Our apartment door now opens by remote control, as do the other doors by which she leaves the apartment block (fortunately a security feature of the building.) She can no longer enter the kitchen, and even if she could, she could not do anything on the counters, stove etc, open the fridge, ovens or cupboards, nor is the kitchen wide enough to turn the wheelchair.

Excellent carers come morning and evening – mornings to dress and transfer her from bed to the wheelchair; evening to undress her, transfer her to the commode for toilet and shower, and then to transfer her to bed, night dress, bedclothes etc.

We need to use the state-subsidised disability taxi service to go anywhere other than the nearby local shops. Buses and trains are not accessible where we live.

We have no complaints at all about the assistance we have received, and fully appreciate the heavily subsidised care which she receives – for all of which we are immensely grateful to Australia’s taxpayers.

Prof Russell comments on a lack of co-ordination of care. I can vouch for the lack of co-ordination between the federal government, state governments and volunteer helping agencies such as SCIA (the Spinal Care Injury Association), and the providers of the bladder catheters, day and night urine bags and other special appliances needed in the care of paraplegics (and, of course, more so, of quadriplegics). Fortunately, the excellent occupational therapist and social worker in the hospital’s spinal rehabilitation unit helped us steer our way through the many different avenues for help. But that all ended with my wife’s discharge from the unit. We now manage all this ourselves.

So much for lack of co-ordination.

As for ‘care for the carers’ – I am in my early 80s. I have been doing the shopping, preparing the meals, doing the laundry etc. for many years prior to, and since, her stroke. During her year’s absence after the stroke, I  became profoundly depressed. Although I would visit her every day, wherever she was, her timetable was filled with physiotherapy, occupational therapy, learning to drive the wheelchair etc. We were living quite separate lives – difficult after all these decades of a happy marriage. The psychologist I attended was a great help, and I still take the prescribed antidepressants.

It was wonderful when she returned home, but… I became the sole carer 22 hours out of every 24. Meals, cups of tea, making sure that whatever she needed is within reach – or being around to bring her things – throughout the day. Once she is in bed each evening, this continues until sleep-time – then laying out clothes for the morrow and ensuring that drinking water bottle, medicines, bed and television controls are all within reach.

Once she falls asleep, I am on night shift 7/7. She has her mobile phone easily within reach, and also the landline, in case she drops the mobile phone. For 22/24, I carry my mobile phone with me. One touch on her phone and I go to her assistance.

With her temperature control damaged by the spinal injury, she might become too warm or too cold. She might drop her water bottle, the remote control for the air-conditioner or even the mobile phone. I sleep when I can, often in spurts, and catch up during the day when she is well-settled in the wheelchair, with anything she might need within reach.

After four years, all my family (and I) realised that I needed a break. That meant that a family member (despite having their own young family to care for) had to move in for the 22/24 duty. I took three days and nights away interstate. Half-a-year later, the family are suggesting that I get away again.

Fortunately, I am deeply in love with my wife; fortunately, we have a reasonably sized family to whom we can turn for help; fortunately, although the superannuation is running down, we are managing financially. No holidays, of course – who can afford to travel with professional carers? Only the wealthy or sponsored paralympians. With depleting superannuation, a severe limit on plays, concerts, movies etc.

But we are the lucky ones! I am not complaining, merely describing.

Reinforcing Prof Russell’s statistics, I ask about the care of the less fortunate carers, perhaps older or less physically able than I, with their own families to look after, without superannuation, perhaps without family to give them a break from caring.

I would hate to see one centralised bureaucracy handling the problems of people like us. What I would like to see, however, is much more co-ordination between hospital spinal (or other relevant) unit, out-patient services, hospital and/or community social workers, providers of amenities, professional care companies, the patient’s general practitioner, local nursing services (needed for bladder catheter changing, checking on bedsores etc) and the primary carer.

I was never trained to be a carer. I very much doubt that other primary carers have had any such training. We are just ordinary people coping our best with an extraordinary and unexpected situation, for which we were totally unprepared. We do it out of love. We do it knowing that it will continue – “until death (or dementia or other disability) do us part.”

Prof Russell concluded: “If Australia wants to maintain or increase reliance on family carers, then more must be done to alleviate the burdens of caring, reduce the associated economic costs and build a continuum between informal and formal care.” 

Would it be too much, for instance, to expect help in the form of our own ‘care co-ordinator’ for people such as my wife and myself?

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John Laurence Menadue is the publisher of Pearls & Irritations. He has had a distinguished career both in the private sector and in the Public Service.

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