Life and death issues

By Victoria B.

Courtesy Reuters

At 88 my dad could have been taken for a spritely 70 year old. At 89 he’s a vegetable.

There were a few steps involved: he had taken to passing out without warning  every few months. Each time he had an incident, his mental acuity seemed slightly affected, but he was still okay. His memory was outstanding spanning back through his lifetime. He could remember vividly dates and details of political issues from the forties onwards, quoting who said what, who did what, and the media reaction. But the difference lay in how quick he was to enter discussions, and that he became quiet on the subject of ‘The War’, which in preceding years had become an increasingly compelling subject for him.

But in June 2013 he had another incident, and was hospitalized for eight weeks, until we could find a care home for him.

Overnight he had ceased to be able to feed himself or walk or talk more than a few, repeated words. Our learning curve in the area of dementia was rapid and pitiless. His only moments of lucidity consisted of an agonizing wail: ‘Take me home.”

We threw ourselves into the business of residential care: a shock to our systems and senses. We found him  the best residential care we could, locally, so that his wife and my brothers could visit him with relative ease. For me it’s a long trip across town. The residence has relatively clean air – it’s without the overwhelming smell of perfumed faeces that many of them had. The staff are friendly and have a reasonably caring attitude to their patients. This compares well against other reports.

The patients are locked in through a security system. You need a pin to enter and then another to get into the high care section. The first section you pass through, in all of the facilities we saw, contains patients who can move, talk, feed themselves but all in a diminished capacity. They are however capable of social interaction with each other.

The high care section is different. Usually about 20 patients. They lie in large armchair style wheel chairs. The backs of the chairs are moreorless permanently lowered enough to enable the residents to doze off as they do most of the time. The faces are dull, lifeless, the eyes and mouths sunken. The bodies are in various states of disuse: some relatively straight, some buckled over.

I don’t know whether my father recognizes me. His face lights up when I come, but then, unlike the other patients, his face lights up and he adopts an attentive and smiling countenance when anyone approaches him (usually only staff are present) .

His face animated, his feet bouncing on the chair’s footrest as though he’s showing me he can dance, he talks gobbledygook at me. ‘Mi mi maa. Woof, woof,’  and he laughs. He knows no modulation. He can become quite loud and whistles, blowing spittle at my mouth. He coughs – they all cough. He’s never smoked, but his lungs are congested. He coughs, I wipe the globs of mucous from his mouth.

I take him down for some gospel singing – he remembers the words of songs and is more at ease singing. It’s not really the advertised gospel however, it’s straight out hymns. He’s highly hostile to religion. I don’t know if this is what makes him laugh a lot, or if he really is only laughing every time the word ‘Jesus’ comes up, as it might seem.

It is completely guesswork whether anything has meaning to him. He can supply single-word answers to questions, but my feeling is he supplies the first monosyllabic response that falls into his brain.

With one exception. On occasion he strings a sentence together. ‘Get me out of here. Take me home.’ Looking at me intently ‘Will you take me home?’

This done with a searing wailing – the same wail with which occasionally another ‘resident’ will burst out uncontrollably. Until one of his fellows shrieks with a visciousness all the more surprising and grotesque for coming from an otherwise inert body ‘Shuddup! Get out of here.’ Then silence, or rather the muted droning of bodies protesting their struggle to survive, reigns again.

Do you get the picture?

Go into these high care residences and see what is happening.

Can we call this life?

The Scream

I can do nothing for my father. When I leave him his eyes narrow til no white shows, light leaves them, and he stares an impenetrable stare. What is he thinking? Is he thinking? Impossible to know. Is it hate I’m seeing? Is it the most unutterable misery?

Is it  an unspeakable despair the likes of which I'm yet to encounter?

I do know that in  command of his capacities he would have said an absolute no to this existence. When he gets to his grave, he will turn over in horror at the amount of money his tortured existence is costing. It is bizarre that he is spending more now than he has ever spent on himself. And he is sustaining an industry. I believe he will stay in this condition for some years.

The society can keep people alive way beyond previous limits, we need to review what it is to be alive.

The world is at a point where we need to be able to question and make decisions about how our lives will end. We need to be empowered to make end of life decisions. We need to bring into the open the conditions of life to which so many of our (mainly) elderly are condemned. And we need to ask, is this fair, is this a just end, is this humanity?