There are tissues in every corner of every room in my mother’s house. In the bathroom there are nine identical boxes of them disguised as a mini makeup stand. These are not the biodegradable, bamboo or recycled paper tissues my environmentally conscious soul buys. These are the remnants of a Tesco’s bulk buy offer, circa 2014. Having read enough dementia care blogs, posts and tales, I know there’s a chance that the carefully folded, pre-loved tissues placed in strange spots around the house, may well be markers. Markers that tell her where she’s been, what she’s done (remove or put on makeup etc); that the mug sitting on a tissue, waiting beside the kettle is for the next cup of coffee; that reassure her she is well-prepared for any sudden emergency - emotional or physical. They are tucked into the sleeves of every jumper, in every pocket, and they lie in wait in every crevice of her bag.
The house is typical of a war baby (or over-the-borderline hoarder). There are corners where so much 'stuff' is piled against doors and in front of cupboards that it’s not possible to open them. I’ve spent hours when she’s out or we’re having a hearing aid free day quietly clearing them away. The piles are of old newspapers, paper copies of communications from officialdom, and endless special offers from supermarkets through to Lotto scams (these should be outlawed in my opinion.)
A small utility area leads to her back door which has been inaccessible for at least two years. Outside there is a steep step leading up to it, and I suspect a small fall at some point may have instilled a sense of self-preservation. On the inside, there is a well-worn pathway to the dishwasher and a makeshift rubbish bin. There is also a washer/dryer which was installed by stealth on my last visit - “let’s go out for coffee, Freya’s going to stay here and do some work”. When she notices it, we convince her that it’s a reconditioned machine from a charity shop, to minimise the stress of scarcity - “...where did you get the money from? How can we afford a new machine? I can’t afford a new machine, the old one works just fine...“ Lying is a deeply uncomfortable addition to the resource folder of care, and, as any dementia carer will tell you, essential to minimising agitation and aggression. From agreeing to complete nonsense, to bending the truth about who’s paying for what, it becomes easier with practice like any new skill.
One of my ‘go-to’ self-care habits is to clean, and I’m talking the deeper the need for self-care, the deeper the clean. If or when this truly terrible disease strikes me, there’s a good chance my children will find me in a clinically clean tiny home with a couple of cats. (The danger here of course might be the need to safeguard the cats in line with the decimation in my brain - washing machines, dishwashers/showers could become increasingly hazardous to my feline friends!)
Which brings me nicely back to the tissue issue. In my determination to get behind a Herculean clean and sort, (without it seeming as though that’s what I’m doing,) wash-loads of sheets and tired jumpers are processed. However, meticulous checking for the ubiquitous tissues fails time and time again. I open the door of the machine and my scrubbers’ heart sinks as the first of many (so many) tiny pulpy soggy white scraps of tissues shed their shackles and descend prettily down to the newly vacuumed carpet.
Suppressing a sudden urge to cry, I give everything slightly too severe a shake as I pull each garment towards the freedom of the holey plastic laundry basket beneath. The sticky snow cascades in and around everything. Gritting my teeth now, each piece of clothing is laboriously hung on the radiators blasting out their heat. All of her fresh-smelling jumpers are flecked with tiny pulpy tissue bits, and I spend precious time trying to brush them off, stretching them over the heaters, and tossing up with the idea of a re-wash for two of three of them. Irritation spreads through my frugal veins as I get to the last of the wash, and despite my best attempts to avoid it, I discover a pile of my underwear looking like a small snowdrift in the bottom of the basket.
Swearing now, I grab them, and convinced that shaking them outside will be better for my mental health, fling open the nearest unblocked exit. Standing on the front doorstep of my mother’s house in the early hours of a spring morning, an impromptu vision of what I must look like to the passing neighbours on their way to work flashes through my mind. I begin to giggle. Certainly not adding anything to quell any neighbourly concern, then. There I am, a pyjama clad middle aged woman, vigorously waving a handful of brightly coloured knickers amid clouds of tiny white particles, and giggling uncontrollably.
The Comfort Tissues and my manic cleaning have inevitably collided, and in a glaring irony, the very thin line between Loved One with Dementia, and the carer, is exposed.
Thank you for taking the time to read my ramblings.