Quick Update – MNDA Survey…….”Assisted Suicide”?

Just to update now that the new meds have had time to get into Carol’s system – yes they do appear to be working. Always wary of speaking too soon, just over one week, but there have been no further palpitations so far. One of the meds is a replacement so I’ve weaned Carol off an existing med and onto the new one. Unfortunately there hasn’t been a marked change in Carol’s sleep pattern, it’s still patchy at best, but let’s keep our fingers crossed. What we have seen is a build up of saliva since these meds started – may just be a coincidence but Carol requested an increase in the syringe driver dosage to try and counter this – and then a couple of days later asked for it to be dropped again! We’ll monitor to see whether there are any changes over the next week or so.

We’ve just completed a survey from the MNDA. The carer’s one is pretty straightforward and I’ll talk about this later but the one for Carol was mainly around end of life choices – we had to answer simple questions on Carol’s personal instructions (Advanced Directive etc) but there are others like:

1)      “The MND Association is very keen to know what their members think about assisted suicide.  What are your views?”

2)      “Are there any circumstances in which you would consider this for yourself?”

Now this is a very emotive subject – which is probably why our views, and those in a similar position to us, are interesting to the MNDA study. I remember listening to a Jeremy Vine phone-in a few months ago about Dignitas – the Swiss clinic – and getting all wound up over some of the callers and comments. As I’ve said before everybody is entitled to an opinion – but I get annoyed when people who have never been in the position to even have to think such thoughts get all high and mighty about those who are actually having to live that life – or not living life (which is the whole point really isn’t it). Then to add insult to injury some of them try and bring religion into the discussion and the whole thing disintegrates into farce.

Now before I upset anyone with my opinion please be assured that we have absolutely no intention of even considering this route – it’s just not in Carol’s nature despite facing the uncertainty of the future – so don’t panic!  I’d also like to say that this wasn’t a subject we discussed much before Carol became ill. But I do know for certain that I have never looked at any of those stories on the news and objected to what those people were doing – I wasn’t living their lives so how could I understand what they were going through.

The answer to question 2 has been touched upon in an earlier post – Carol and I always agreed that the only time we’d ever consider such action would be if machines were the only thing keeping us alive – that’s not any kind of quality of life – it’s not living so we wouldn’t want it.

Question 1 is a very personal choice, but again both Carol and I share the same viewpoint. Until you are living with something like we are every single day then I’m sorry but you cannot understand what it’s like. You may think you can empathise with the situation but unless you are also trapped inside a previously healthy body that now doesn’t work how can you tell me you understand? I’m living with Carol, and have experienced every single day of this disease – but do I / can I really understand how Carol feels? The answer is probably not as much as I’d like to think I do.

What I’m trying to say is that nobody but the individual themselves can really understand and therefore they should be allowed to control their own journey – while the rest of us must accept their decisions. Unfortunately that’s impossible because “suicide” is illegal – and that’s the bit that gets me annoyed.

I’m afraid that what I object to is the word “suicide” in circumstances where the individual is diagnosed with an incurable / terminal illness. If you are facing a certain death, and in many cases a painful, confusing, undignified death, then the medical profession should be able to do something about that in line with your wishes – without any comeback.

Now don’t get me wrong – if you take your own life when you’re “healthy” that’s worthy of challenge – but then the argument over what constitutes “healthy” begins and nobody gets anywhere – which is the whole problem!

To probably oversimplify the point – over the last 2 years we’ve lost both of our families pet dogs. Holly had cancer and Meg had diabetes that caused complications – in both cases they faced the prospect of living with severe pain so we put them to sleep. Why did we do that? Because it was the “humane” thing to do – and we’d probably have been accused of causing unnecessary suffering if we hadn’t made that decision.

So the question is – why is it not “humane” to do that to “humans” – why do we not have the right to make that decision for ourselves when the person facing that life of pain is us?  Again it’s because the law classes any such action as “suicide” - and that’s just not allowed.

Now those high and mighty people will come back and say that dogs can’t make the decision for themselves so we’re doing the right thing by them when we take action – well I say what difference does that make? It seems that we have absolute control over such decisions in our lives as where we want to live, who we want to live with, what job we want to do, where we want to go on holiday, how we want to spend our money etc, etc – but we are not entitled to make the decision about ending our own suffering irrespective of what kind of existence that leaves us facing - sorry but for me that’s just not right.

Stopping before I go any further with this rant I repeat that Carol has no intention of choosing this option – the future will be faced with a smile and each new day brings the chance to spend time with the family.

But the question is, if there’s someone out there in similar circumstances who does want to choose this option would they be wrong? And how could we really understand?