Academic journal article Australian Health Review

"Permission to Speak": A Carer's Experience

Academic journal article Australian Health Review

"Permission to Speak": A Carer's Experience

Article excerpt

BILL, MY LIFE PARTNER of 40 years, was diagnosed with cardiomyopathy in 2003 when he was 60. The latter is a quite common severe heart disease, usually of people older than Bill. Coronary heart disease saturates publicity about heart disease, making other heart disease invisible. Coronary heart disease tends to be a disease of coronary arteries but Bill's arteries are very good. Cardiomyopathy is a disease of the heart muscle. The damage has led to heart failure, the inability of the heart to pump sufficient blood to supply his body's needs. In heart failure or reduced function, the heart is unable to pump as effectively, with symptoms such as shortness of breath, tiredness and fluid retention.1 cases are sometimes treated with a heart transplant.

I retired in 2003, and ten months later became Bill's informal carer when he suffered a stroke as the result of a heart procedure to replace, with a defibrillator, his 1999 pacemaker, which was malfunctioning. His heart was defined in the profoundly-to-moderately impaired category. His ejection fraction (pumping capacity) was 25% compared with the healthy heart at between 50%-80%. During the heart procedure, difficulties arose removing the old pacemaker and a clot around the old pacemaker leads escaped. Four days later he suffered a stroke.

I have chosen to write about two aspects of the carer experience where the structure of medicine and the related professions compound the difficulties with managing chronic disease. From at least the 1890s, carers and relatives have been regarded as a nuisance to medicine, and in my view this persists. I have been constantly excluded from hospital environments and become an illegitimate and shadowy figure, yet I am central to Bill's chances of extending his life. When it suits powerful members of the "health team", I can be wheeled back in at discharge to take almost complete responsibility, after five minutes training, for his medications and all other hospital functions.

Seen but not heard

I was forcefully inducted into "my place" as "seen and not heard" when Bill was transferred to the stroke ward of a different hospital following the clot debacle. At that time, he was in the most acute phase of aphasia, with difficulty comprehending and speaking. Speech damage is in a switching area and the wrong words emerge. Like most people, Bill is a split assertive: assertive about some things and not others. He would sometimes tell me important symptoms and not the doctors, nurses or therapists. He continually told me he had a pain in his right stroke foot and showed me it was shooting out. I initially approached a physiotherapist with Bill's concerns; she said since the information had come from me and not Bill it would not be acted upon. It took me three weeks to be allowed to communicate this information to the "health team", which I finally did through a responsive nurse, and he was given Panadol. Whenever I tried to offer useful information I was repulsed. The doctor gave the distinct impression he was doing a battery of tests, including a foot x-ray which I had to pay for, to prove I was wrong. After Bill left the hospital eight weeks later, it was diagnosed as an electrical impulse caused by scarring in the brain from his stroke and is still troublesome.

Bill was fortunate to be accepted for six months more rehabilitation at another facility. However, in my view, the poor level of his cardiac function was never communicated adequately to the treatment staff. In time I became concerned at the intensity of the physical exercise program for a person with profound-to-moderate heart failure. When Bill started to have new and worse heart failure symptoms at home I approached the physiotherapist with my concerns but was told that the program could only be modified through medical advice. It became clear they were treating his disease as coronary heart disease not cardiomyopathy. I contacted our general practitioner, two cardiologists and our stroke physician and they intervened with letters to the rehabilitation facility. …

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