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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5 Responses to A paraplegic woman and her elderly carer.

  1. Mary Tehan says:

    How deeply humbling to read this article from this well-known and respected doctor whom I do not know personally. As a former nurse and secondary carer to my mother when alive, I noticed the progressive expectations placed on home carers to coordinate care by a system that used to enable me, in a professional capacity, to coordinate care across the myriad of programs and services needed to support a person at home. As a secondary carer to my mother, I would spend days on the phone trying to get doctors to speak to each other, get reports to be sent across different service providers and sectors to try and get them all ‘on the same page’ to care for my mother appropriately. It was a nightmare! (I have seen many people give up paid work completely because of the time needed to coordinate care etc.). As well, in my mother’s situation, NFR (not-for-resuscitation) orders were only endorsed within a hospital setting and not in an aged care facility. Advance Care Directives were not seen to be adequate (not accepted) within a hospital setting etc etc … so we were all bounced between systems that wouldn’t acknowledge or recognise each other for the sake of the patient and family.

    I can’t imagine how this doctor feels, that a system that he has devoted his professional life to, does not seem to be able to offer him what he and his wife need to enable them to live as well and as fully as possible in the circumstances. Carer Coordinators would be able to embrace and negotiate both people’s needs and keep attuned to any new developments as they became available.

    What a blessing you are, doctor, to the woman you love and the family you have raised. Go gently.

  2. Trevor Parmenter (disability advocate) says:

    A truly touching and heartwarming story, but a better title would have been ” A woman with paraplegia…”
    Terms such as ” a paraplegic” and “a quadriplegic” have a tendency to stereotype the person. Their first characteristic is that they are a human person who may have some form of a physical or mental health impairment.

    • The Carer says:

      From ‘the Carer’ who is trying to illustrate the practical side of Prof Russell’s study.
      You response, while “politically correct, is, in practice, quite wrong.
      My wife, to family and friends, is first and foremost, wife, mother, aunt, cousin, grandmother and friend. She just happens to be quadriplegic.
      To the rest of the world, however, she is, first and foremost, paraplegic, and needs, in every imaginable circumstance, to be recognised as such – even before recognition that she is a woman.
      Whether in a shop with a counter or shelves she cannot reach, negotiating her way on a pavement, in a corridor or in a lift, waiting at a traffic light or boarding or alighting from a disability cab, or in hospital – where I attach a red (WARNING) label to alert all the nurses and nursing aides on all the shifts, that she cannot move her legs, open her bowels and has a urine bag – her primary need is that all strangers recognise that she is paraplegic.
      Yes, that just IS her stereotype – and it is fundamental to her independent life in the community.
      To pretend otherwise is to ignore reality.
      While I applaud your benevolence in giving your time as a disability advocate, let’s have no political correctness. It is a paltry ‘intellectual’ matter in the face of the practical issues studied by Prof. Russell. My wife would say, in those memorable words, “Frankly, I couldn’t give a damn” – she needs the public to see her, first and foremost, as “a paraplegic” and to extend the necessary courtesies and assistance – which they do.
      Sorry, but from a carer’s perspective, you have the cart before the horse.
      Sincerely,
      The Carer, who is trying to illustrate the practical side of Prof Russell’s study.

  3. Jim KABLE says:

    Very moving – your outline of what the situation is for you and your wife. As representative of how it is for so many in our society – and for you with the resources (I don’t primarily mean financial) to negotiate the services and carer options, to source them and the products needed to ensure your wife some degree of dignity – to have some respite for yourself. I can only begin to imagine given this insight into your world. In fact I was only thinking of such matters with greetings to a neighbour this morning as we wheeled our villa units garbage bins in from the street. He’s in his early 80s – his wife just recently taking the descent into dementia – which I saw for the first time yesterday afternoon as she came to the front porch, something wrapped under her arm – and a handbag in her other hand: Well, it’s time to go home! She announced. I looked at her husband! And where’s that? I asked. Oh, you know! She answered. Singleton I suggested? Yes. I turned to her husband – so how long is it since you’ve lived here? 22 years! His wife listened in attentively as we spoke of the people here in this little villa community before and since us. And then she left the door to go home. I suggested she take a seat on her front bench – that the bus would be along. Her husband tells me he sleeps very little at night. Sometimes his wife is up at 2.00 am playing around ineffectually with the washing machine. This morning the refrigerator – not a self-defroster – itself elderly – he was putting in saucepans of hot water to try and melt away the build-up of ice… Such lovely neighbours – and now this. He’s exhausted she no longer knows who she is let alone where home is! My wife and I – with no children – in our late 60s – wondering increasingly about how things will be for us in another decade or thereabouts. About the co-ordination of public services! Thank-you.

  4. Rosemary O'Grady says:

    This indictment is applauded by many who have been in similar/comparable situations. In my own case – my mother, after serious illness, died while on holiday because the hospital/medical staff simply ignored my repeated, ie repeated requests that they obtain her case-notes from interstate – before imposing what became a fatal procedure on her. Her prognosis was 5 years: she died out of the blue one hot summer’s day. We require too little intelligence of our bureaucrats (long gone are notions of ‘public service’). Accountability. That is a priority- so that the state may deliver services funded by the revenue to standards we, the people/citizens, can accept.

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