My knowledge of dementia prior to its insidious arrival in our family was limited to what I had learnt and seen as a medical professional. I knew that people with dementia were often confused, that their short-term memory and personality could be affected and that they may struggle to communicate. I knew it only as a disease affecting cognitive function; how we think, perceive and interact with the world – but I had not appreciated the impact that dementia can have on motor function; how we physically move about within that world. My assumption was that the reason most patients with dementia were incapacitated, bed-bound, or confined to a wheelchair was because they were elderly and very frail. It did not occur to me that the reason they were frail and incapacitated was, at least partially down to the dementia itself.
The first thing that alerted me to mum’s reduced mobility was her struggling to get in and out of the swimming pool on holiday a few years ago. Since then flights of stairs have been manageable as long as they have a substantial hand rail and are stationary. Moving stairs (or as I like to call them ‘escalators’) are fraught with peril as described in my Christmas Shopping Post http://wp.me/p6uRmE-1x. and a couple of steps descending into a pool of water with no surface to lean on require two able-bodied assistants and the sort of tongue-sticking-out concentration demonstrated by a toddler using scissors for the first time. So we have learned to adapt and adjust to the new limitations, we watch with the scrutiny one would normally reserve for the very infirm as mum navigates steps into restaurants, revolving doors into shopping centres and narrow aisles in cinemas. In fact it was the cinema where I first noticed the new addition to the slowly growing list of mobility and motility symptoms; dysphagia – i.e. problems swallowing.
Now, anyone who knows their onions (and by that I mean anyone who knows about dementia) will tell you that issues with swallowing are common in advanced disease but I was always anticipating that we would get to the pureed food stage at about the same time as the wheelchair stage (and what a great stage that will be to look forward to!) What I didn’t realise is that mum’s dysphagia would first present with her aspirating her popcorn during the recent Star Wars film (I say recent which just goes to show how long it is since I have written a post but you know the film I mean – this year’s one – v. good by the way – all choking aside – do you see what I did there?). Even manoeuvring mum into the cinema had been fairly traumatic. We had arrived, small children in tow as the room darkened, armed with aforementioned popcorn, duffle coats, hats and bags and discovered that our allocated seats were right at the back. Access to these seats was reliant on the goodwill of five other cinema goers who had to stand and shuffle back in order to allow us to haul our luggage past them. We had decided in our wisdom that it would be easier to get into our seats and then see who needed to go to the loo once we knew where we were sitting. This obviously necessitated the obliging five people to get back out of their chairs on two further occasions and a lot of loud whispering along the lines of
NO. THIS WAY!!
DON’T FOLLOW DAD! – DAD’S TAKING THE KIDS TO THE LOO.
COME WITH ME!
YOU DON’T NEED TO TAKE YOUR COAT OFF HERE.
THAT’S SOMEONE ELSE’S SEAT.
DON’T SIT ON THAT MAN!!
NO, THAT’S YOUR POPCORN.
SORRY! – DID I JUST KNOCK YOU OUT WITH MY EXTENSIVE COLLECTION OF BAGS ??
JUST SQUEEZE IN HERE – PUT YOUR DRINK HERE – NO! HERE!!!
Once everyone had availed themselves of the conveniences and returned to their seats we settled down as the opening credits rolled and I started to relax. But no sooner had the legendary theme music faded than I realised mum was choking on a piece of The Odeon’s finest popcorn. In fact, by the sound of it that piece of popcorn had been inhaled directly into a main bronchus and she was now trying to cough up an entire lung. The wheezing, barking and spluttering lasted for about twenty seconds, several people turned back in their seats in genuine concern as opposed to annoyance at the interruption and then, as quickly as it had started, it stopped. Mum went from imminent respiratory failure to happy cinema-goer in a matter of moments and stared at the screen as if nothing had happened. There was no trace of the usual embarrassment that accompanies a noisy coughing episode in a confined space. She simply looked straight ahead and everyone else turned back round to address the main feature (some, perhaps slightly disappointed that the drama was over – a good medical emergency often enhances a trip out as long as one is not the patient, a relative or doctor). I meanwhile, was having visions of paramedics attempting resuscitation against a backdrop of Stormtroopers (How would they do it? Would they have to stop the film? Would everyone be really pissed off with us? Why on earth would I give a toss about that? – How terribly British) which somewhat impaired my enjoyment of the remainder of the film. A couple of similar episodes followed at intervals before I realised that perhaps popcorn was not the best and took it away.
Since then we have a noticed an increasing frequency to these choking incidents, Sunday lunches punctuated by collective breath-holding from the family whilst we wait for mum to regain normal respiratory function, an episode on holiday where she coughed so much she vomited on the table (crowded restaurant – not ideal, see later post) and enough independent comment to justify looking at it a little more closely. I suggested to dad that we get a Speech and Language team (SALT) assessment. I think he remains entirely bemused as to why I feel this is necessary – to him it is just a little cough and I suspect he has got used to it. Clearly, it may well prove to be a series of innocuous viral respiratory infections that resolve and allow my mother to return to popcorn-eating with gusto. But if we want to avoid an aspiration pneumonia, protracted hospital stay and potentially issues with artificial feeding surely it is best to get her swallowing assessed properly. Put in this context he couldn’t really refuse (poor man – I’m a bit mean like that) so he has seen the GP (eventually – I know – it is frustrating for us too) and the request has gone in.
I’ll keep you posted as I’m sure you’re all on the edge of your seats!