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Posted by Sue on Sunday, March 23, 2008 @
3:16 AM
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By David Armstrong
OCTOBER 25, 2000 was a big day in our family: my wife, Deb Bailey, and I had been married for 20 years. So I had quietly planned for us to celebrate in style.
A chauffeur in a hire-car picked us up from our home and drove us to the city, to a then-fashionable restaurant. We each had a pre-dinner drink. Our daughters, Claire and Jane, then aged 16 and 14, had a vodka and lemon cocktail, an approximation of the Lemon Stolis they occasionally drank with their friends. I had a gin and tonic and Deb had her favourite, a margarita. She was barely halfway through her drink when her voice began slurring. The slurring, however, worsened. I was at first a little concerned and then, to be honest, a little embarrassed. I thought, however, she was entitled to get a little tipsy.
After leaving the restaurant I gently asked Deb if she had had a long lunch that day. She gave the wrong answer. ``No,'' she said.
People become carers in different ways. Some volunteer; some are paid; and some develop friendships or even enter relationships with others who are handicapped or ill. But most become carers by accident, in the sense that the role is not one we planned. The role is thrust upon us by a terrible turn in life's fortunes. That night of October 25, it transpired, gave us the first sign that whatever forces control the fates had prepared a cruel future for us. My wife was to become a patient and I (along with the girls) was to become a carer.
The word “care'' ought to be one of the best and more important words in our language. Yet “carer'' remains an inadequate word. For the word conveys nothing of the emotional stress, and distress, that carers can live with -- and nothing of the heart-tearing moral and ethical issues many carers confront, especially if they are helping the terminally ill.
Overall, Deb was very healthy. She only had one thing wrong with her. What that one thing was took a while to determine. Motor neurone disease -- an incurable progressive disease that leads to weakness and wasting of muscles -- was an early suspect, not least because her father, Jim Bailey, had been diagnosed with it five years earlier. But tests in November and again in January ruled it out. As her voice got worse and she became frail, tests in February confirmed that she did, indeed, have motor neurone disease. Worse, it turned out to be a very aggressive form of the illness. Worse still, her life expectancy was much shorter than the usual three or so years from diagnosis. But the doctor didn't tell us that.
By mid-February, less than a week after the diagnosis, Deb had lost her voice and had begun to stumble and fall. That's when the carer's role began. Physically caring for Deb got hard very quickly. We had to learn new skills of lifting, showering, dressing and feeding. Every day presented a new challenge. I remember an incident on one morning that visually, at least, was like a scene from a madcap movie. I lifted Deb out of bed and put her in the wheelchair. But her muscles had stiffened and as I lent down to fix her feet on the footrests, she slid out of the chair. That went on three or four times before I worked out how to handle it. I was seized by panic at the time, but even so I couldn't help but think of Charlie Drake, the Worker. Claire and Jane, of course, were helping, mainly in getting Deb to bed. This was a two-person operation that took as long as 45 minutes. They were up late, more or less in rotation. I virtually had a form letter for their school, explaining their absence from the early lessons.
A bereaved person can often feel unsettled, even distressed, for no obvious reason, until it turns out the cause is an unconscious recognition of an imminent significant anniversary. About six months ago, I suddenly became anxious, agitated and distracted -- and for a while I couldn't work out why. Eventually, it dawned on me: this was the time of Nancy Crick's suicide and the revival of the euthanasia debate.
That debate excludes an important reality, for it is conducted mainly in terms of the choices to be made by the patient. If the role of family members is brought into the discussion it is, more often than not, to portray them as vultures who want to hasten death, usually of their elderly parents, and grab their inheritance. Yet in many cases, the decisions on how to manage (and I use that word deliberately) how to manage a death -- with all the moral and ethical dilemmas that entails -- rest with the carer.
Many of us can accept that a terminally ill person in great suffering might choose to end his or her life -- and those of us who don't want to accept it can at least acknowledge the reality. But few of us want to see that power in another person's hands. So, at least in the popular public discussion, we avoid the issue by adopting a caricature -- and we avoid talking and thinking about the most profound question that can confront a carer. Who of us -- I ask a question because in the context of euthanasia, I don't know the answer -- who of us would want to kill a loved one? If the answer is negative, and we tell ourselves that we just want to relieve suffering and pain, how can we be sure we are neither hastening death because we can't bear to look on, nor stringing life out, because we can't bear to let go? How can we be sure we are looking after our loved one, rather than looking after ourselves? These are questions that may have to be answered in chaotic and distressing circumstances -- circumstances that produce uncertainty and ambiguity.
About a month before Deb died, one of her doctors warned me that she would soon suffer great distress. ``You won't want to see it and you certainly won't want the girls to watch their mum going through it,'' he said. ``When that time comes, call me and we'll put her in hospital and make her comfortable.'' This was the first time I heard that phrase ``make her comfortable''. I didn't know what it meant. I thought it might mean euthanasia but I also thought that couldn't be right. So I didn't know what to expect and I wasn't going to ask. I was too afraid to do so. I guess I thought I would find out soon enough.
And I did. A little over three weeks later she woke up trying to cough. ``It's just a cold,'' she told friends. But I knew, as did some friends who are nurses, that this was the start of the end. Deb would not have the muscle-power to cough properly and move the mucus. The ``cold'' would turn into hypostatic pneumonia. Deb insisted that she stay at home, with her family and friends. We dealt with the doctors by telephone and received prescriptions by fax. The initial treatment was scopolamine, or hyoscine, to dry the mucus, a nebuliser and physiotherapy.
WITHIN three days Deb became highly distressed, physically and emotionally, as she struggled to breathe. A nurse told me Deb should be in hospital. I couldn't even contemplate it: I didn't know what they would do.
We got Deb into bed. She wrote the names of two gay friends, one of whom had had AIDS and had somehow been assisted in his death. I told her we didn't have the means of doing that and that she would have to go to hospital. She refused and said her friends were helped at home. She was still in great distress and by now I was hardly scrupulous in giving her medication to help her sleep. Even so, it was well after 2.30am before she dozed off. I vowed she would not have another night like that.
The next day, one of the doctors prescribed morphine. This is what would make Deb comfortable. And it did, after a fashion. The moral issues swirled around us. I couldn't contemplate giving Deb an excessive dose of morphine, so I fell back on the old principle of the unintended secondary effect: the aim was to ease her suffering; if this hastened her death, it could not be helped. We went into another day before I could talk to her again. I asked her what she wanted us to do. I told her we could assist her as her gay friend had been assisted -- or we could keep her comfortable while the lung infection ran its course. She nodded on the second alternative. I don't know what I would have done if Deb had not changed her mind. But when we think of the ethical issues involved, it is important to remember that she did change her mind.
The morphine dosage was not enough to keep her under, so the periods of struggle kept returning. A nurse rang the doctor. ``You have 250ml of morphine,'' he said. ``Use it.'' She recalled a professor who taught her had said: ``You can't make a patient too comfortable.'' I tried to work it out: how much would keep Deb comfortable, even if it hastened her death, and how much might just kill her outright. The question was more or less answered when a friend, a palliative care nurse, came in. ``Deb's comfortable but not as comfortable as she should be,'' she said. I got much the same message from a doctor. Comfortable meant asleep, or at least apparently so; anything less was not comfortable enough.
A few hours after that Deb began to stir and, again, she struggled to breathe. I asked the nurses to give her some more morphine. ``It's not time,'' one of them said. ``I know,'' I said. ``But please give her some anyway.''
Two hours later, Deb died.
Over the next few days I talked it through with friends and relations who were nurses. Did we kill Deb? No, they said, everything had been done in the right way. But that still didn't stop the nightmares. But I'm sure that dying peacefully, with friends and family around her, was better than being deliberately helped from this world. It was certainly better for me -- and for our children. I'm sure it was better for Deb, too. Her death came two days short of nine months after the wedding anniversary dinner. She was 48. ``I feel,'' she wrote in a letter to be opened after her death, ``that we have been the victims of some great cosmic accident.''
Few people ask to be carers, in the sense in which you use the word. But being a carer is one of the greatest gifts we can give to those we love -- even though we wish it were a gift we never had to give.
This is an edited extract of a lecture given by David Armstrong to Carers NSW.
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