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Safety and autonomy when capacity is compromised

My mum has dementia.  She was diagnosed with Alzheimer’s disease last year although she had been deteriorating for a while prior to that.  Mum is only 64 years old and still has young grandchildren who live nearby.  In my blog (www.mumhasdementia.com) I attempt to make some sense of the chaos that dementia has wreaked in our lives by outlining everyday issues that arise. The following is adapted from a post on my blog regarding the delicate balance between safety and autonomy when dealing with the fluctuating levels of understanding that can occur in people with dementia. 

We've recently come back from a family holiday complete with water slides and outdoor adventure areas, where a few issues arose regarding mum's safety.  The experience has led me to question how we can ensure that someone is safe whilst still allowing them to make their own decisions and exercise their freedom of choice.  It often seems that through trying to do 'what is best' for a loved one with dementia, in most circumstances we err on the side of 'keeping them safe' and that this may be potentially more damaging.  On our family holiday there were a few striking instances of how potentially dangerous situations can arise and how we differ in our response to them.  The first incident occurred on a water slide:  Mum can swim and enjoys being in the water much more than she used to (now thankfully untroubled by whether it will ruin her hair or make-up) and my dad suggested that we all went down the individual water chute.  This was a fairly standard plastic tube slide with a few twists and turns terminating in a shallow pool for disembarkation.  There was a height restriction to deter small children and advice to avoid if heavily pregnant etc but otherwise it was billed as a mildly exhilarating ride that all of us had been on several time earlier in the holiday.  My sister and I were initially a little sceptical as to whether mum wanted to go on the slide but dad gently jostled her in the right direction and she seemed amenable to the idea.  She had already been down one of the double chute slides with him on an inflatable and seemed to enjoy herself so we thought we'd give it a go.

My sister and I went down first and waited for mum.  What we hadn't banked on was that whilst she can swim safely and can sit upright going down a slide she clearly couldn't then push herself up out of the shallow pool at the end.  As a result, we saw mum emerge, lying flat on her back as she plummeted into the spray and then we watched in escalating panic as she remained on her back, face covered in water, arms thrashing about, trying to get purchase on the sides of the slide.  The basic reaction of pushing one's hands against the floor to propel your upper body into a seated position and thereby not drown was no longer functioning properly.  After a few seconds of frozen horror we rushed to haul her up out of the water.  She walked unsteadily out of the pool supported by a daughter on either side and we waited for dad.  In the meantime we attracted curious looks from other holidaymakers but generally the whole episode had passed unnoticed.   Dad slid out a few moments later in his usual bombastic fashion (accompanied by lots of noisy laughter and a massive tidal wave).  We tried to impress upon him the severity of the narrowly averted calamity we'd just witnessed but seeing mum stood there, in one piece, albeit a little bedraggled, he was fairly dismissive of our concerns.

A similar incident occurred later that day on the water rapids.  Unpredictable at the best of times, the rapids can throw you about a bit and disorientate even competent swimmers, although they are shallow and in theory an adult who could sit up should not be in any danger.  It was impossible to keep hold of mum as we went down them and she clearly had knocked into some of the hills and turns (as we all did - I have the bruises to prove it).  She looked traumatised as we emerged, as did the lifeguards, although none of them had intervened.  Passers-by enquired whether we needed assistance and some threw fairly withering looks our way implying that we had wilfully inflicted psychological damage on an elderly frail woman (except of course she is neither frail nor elderly but relatively young and physically robust which is where the confusion arises).  We sat her down, got her a coffee and peace was restored but I couldn't shake the uncomfortable feeling that we had pushed our luck too far.

Later still that same day we went into the pool with the wave machine.  My sister had previously rescued mum from what were pretty substantial waves when she slipped and panicked so, in view of the preceding events, I was nervous as to how we would manage - but dad insisted that mum liked the waves and in we sloshed.  The waves started coming, at first minor ripples, then more significant undulation and finally crashing breakwater monsters and mum was bobbing about smiling away.  She looked crestfallen when they started to taper off again and exclaimed "Oh!  Is it over?" in a genuinely disappointed voice.  I was struck by how easy it would have been to have assumed that this particular scenario would have been too much for her - and how close we came to missing out on a good experience - bearing in mind that these opportunities are now limited.

Of course the easiest and safest thing to have done all holiday would have been to have sat mum in a chair, given her a warm drink and told her not to move while we all leapt in and out of the water and threw ourselves down chutes and whirlpools but would this have been right?  Would it have been better than exposing her to near-drowning?  I simply don't know.  Looking back now I could construct a list of things mum enjoyed, the things she seemed ambivalent about and those that were simply too fraught with peril to pursue again but it was only by trying them out that we established her limits and this would be true of anybody.  Any parent knows that sinking feeling of having set a child on a path of something we would have predicted was well within their capabilities only to be presented with a tearful howling infant at the end of it.  Or to have resisted a child's determined entreaties to let them go horse-riding / on the dodgems / diving with sharks only to find that they go and do it anyway and LOVE IT!  Of course if we go on exactly the same holiday next year mum's limits will have changed again and we will have to experiment to find their new level but that will also be true of the children and maybe some of the other adults (personally I have made a mental note to avoid some of the geysers on the lazy river which came a little too close to colonic irrigation for comfort).  My sister and I are sometimes surprised and even shocked by how much dad pushes mum to try things out and test her boundaries but in a way I admire his gumption.  He is determined that mum continues to experience life in all its exhilarating, whitewater glory and if that involves a few nail-biting moments then so be it.