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Dementia takes the choice out of death decisions

We should be allowed to make rational decisions about the way we end our lives.

When will our politicians have the courage to put in place legislation that allows us, as age and infirmity take their toll, to make rational decisions about the way we end our lives? The time for dithering, procrastinating, and making excuses is long past. Action is needed right now.

I understand the decision taken by Peter and Pat Shaw, as outlined in Julia Medew's excellent report. I admire their strength and courage, and lament that the law did not support what they did or allow their children to be involved.

Having passed my allotted three-score-years-and-ten, I'm certainly categorised as "old". And with age, the two "d" words – death and dementia – loom ever larger. For me, the brutal truth is that the former will be welcome if the latter becomes a reality.

I watched as dementia steadily destroyed my mother's quality of life in the two years before she died. It also overwhelmed her mother and her three aunts. Dementia is a terrible disease. It strips away any sense of dignity and pride, in the worst cases eliminating any semblance of humanity. It is a devastatingly cruel punishment, both for the sufferers and those who love them.

I went to two funerals in 2015 that marked the end of several years spent, helpless and unable to communicate, in the remorseless grip of dementia. Families suffered immensely, wishing for a release that came much later than it should. Like Damocles' sword, this possible fate hovers menacingly over all of us as we move, to use one of the many euphemisms, into the twilight years.

So we study the statistics, check family histories, and ponder risk factors and genetic predisposition, for we understand that, at the moment, the medical profession is still struggling to understand exactly what triggers dementia and how it might be treated.

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So we do what we can, keeping our minds and bodies as active as possible, monitoring what we eat, and watching with trepidation for any worrying signs of forgetfulness or confusion. All the while knowing that we may be incapable of recognising those signs if they do occur.

Or, like my mother, that we might angrily refuse to recognise them even though they are blindingly obvious to everyone else. For some victims, dementia is just a huge conspiracy.

And I wonder about my reaction if it happens to me. Or if I am incapacitated by a stroke. You may think such thoughts are overly pessimistic, but I would counter by arguing that it's an issue that needs to be discussed openly in families, a possibility that has to be prepared for in advance.

With regard to physical limitations imposed by age, there are numerous ways in which we can influence what we do and how we do it. We can seek professional advice, assess situations, and make rational decisions. Exactly as the Shaws did.

It may not be pleasant, but at least there are measures we can take. We have a degree of control.

But something like dementia removes the capacity to do that. Reliable self-analysis becomes impossible. Control rapidly crumbles into dependence. We lose the ability to do the very things that make us human. And there is no going back.

Don't talk to me about palliative care as if it is some sort of all-powerful miracle procedure that will automatically make life bearable in extreme situations. It didn't work with my mother. All it did was prolong her distress.

How do you fight a ghost – a pitiless, relentless, insidious ghost? Something you can't see because it cripples your capacity to understand what is happening. It's a horrifying thought, and I become frustrated and annoyed by those who insist that life should be preserved no matter how bad the circumstances.

If others choose, for whatever reason, to let nature take its course, then so be it. But I can't forget what I saw and heard when visiting my mother in a high-care nursing home. It was a nightmare, a shelter for the living dead. The manner of dying casts a long shadow over the living.

So I'd contend that it's important to prepare for a time when we might not be capable of making rational decisions. I've gone as far as possible by organising an Advance Healthcare Directive, which allows me to specify what medical assistance should not be given if I reach the point of being "… unable to participate effectively in decisions about my medical care".

But an Advance Healthcare Directive is only one small step along the way. What I really want is a recognised, honourable, legally enforceable way of ending my life if certain extremely debilitating physical and/or mental circumstances prevail.

Before it's too late.

David Campbell is a freelance writer.

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