Sometimes, like now, today, and let's be honest, yesterday and the day before that, it is hard to see how one might possibly get through the next hour, let alone the whole day, let alone looking forward and wondering if this will infact go on and on until there is literally nothing to save.  Mum's increasing fraility of mind and body somehow only highlights my own.  We are both caught  in the same cast iron Little Nipper spring trap and I am sometimes moments away from chewing through my own leg in order to crawl away to die in the undergrowth.

The Diary of Dementia lurches on, each day is exactly 24 hours long.  Usually as humans we divide up those 24 hours into some rough pattern, block out bits in highlighted colours, hang on solid decorations to represent the various O'Clocks through which we pass the time.  Getting up O'Clock, Breakfast O'Clock, Crossword o'Clock, etcetera  The Dementia O'Clock has no recognisable features with which to map out the passing of abstract concepts like time.  There is no 'night time' no 'bedtime' no 'dinnertime'.  There is only lots of unfilled bits of space / time continuum which at any nanosecond could morph into something random.  Conversation becomes fraught with danger for at any moment the subject matter could slide alarmingly into uncharted, unknown territory.  Just now, mum zimmered after me when I went to the loo, she is always worried if I am not in her direct eyeline, so gets an enormous amount of exercise in by following me around the Bungalow,  in fact her pathological attachment to my movements makes an umbilical cord seem free range.  "Are you alright ?" I say, as she blocks yet another doorway and traps me yet again in an even smaller area of The Bungalow, "Is that Bugger still here?!" she says, "What Bugger?" I ask, "That Bugger that I married" she practically spits, "Harry?" (my late father the only person she was ever married to) I ask, "no, not him that other bugger!" she says....

"No, it's just you and me here" I say.  She sighs with what I suppose is relief but could just as easily be pure exhaustion.  "Can I go to bed?" she breathes, the effort of asking  now seems too much for her and she sways dramatically on her zimmerframe as if to emphasise her perilous situation.  

So we begin the task that is repeated with tedious monotony throughout the aforementioned 24 hours, getting undressed and into her nightie, refilling her hot water bottle, washing and changing her pads and looking for a cat that might (probably not) be persuaded to sit on her bed for an hour or so before she decides to get up again, and want to get dressed, and have a decaffinated coffee and a jam sandwich or ask for a book to read, and so on and so forth, throughout the day and night. 

Thankfully, I have a half bottle of wine and some soda water with which to punctuate the next hour or so, I am quieter than a mouse as I prise open the fridge door and stuff some olives and cheese into my mouth while I pour the wine and then roll a ciggie to tell my mind and body that this is an official "rest me-time O'Clock".  As always, I wonder how long either of us can carry on like this and when I have exhausted all the possible alternatives and discarded all the options, I will look at the increasinly baffling crossword yet again.

I would like to turn on the television but the cost of waking mum up and her coming back out of bed and wanting to repeat all thre stages yet again is too high.  

I turned 60 in March, she will be 90 in July.  I cannot predecease her by choice.  I can do nothing but carry on.  It is hard.

 

If I Could Write ....

If I could write a poem

I would choose my words

very very carfefully

I would ignore rhymes and meter

and font size

And simply hope against hope

that my distress didnt come through  

So, i have changed the font size - otherwise i could not see the screen to type.  Sue me!  (as people that most definitely were not me used to say)   The point is, if there is one, which obviously there isn't, is that I am alone, I am in the position where I am literally waiting for one person to die so that I might have a few more years as a proper living person.  This can't seem to happen anyway, because I can't seem to get over the fact that the person I thought that I was getting old with, the person I had gone through thick and thin with, the father of two of my beloved 3 sons, my rock, my reason for being able to look after my aged parents and feel that someone had my back, someone understood and would be there for me..... would betray me in such a cowardly cliched way.  He did.  

The News

Alongside the tedious tapestry of Life in Lockdown with my mother, weaving in and around the various crumbling and increasingly decrepit nature of both of us has been, indeed still is, The News.  In the beginning, The News appeared to be not only 24 hour a day coverage of Corona Virus, to the near exclusion of any other national or international news but also bafflingly bereft of any clear information.  The country waited anxiously for announcements of positive tests, deaths, graphs, restrictions and reactions.  Mum followed these bulletins with a religious fervour matched only by her complete inability to grasp either the content or the implications.  In fairness, I believe most people on the planet were having similar failures of cognition, myself included.

In an effort to make sure that we both remained safe from the "whatever it is that means we can't go outdoors" - nearly a year on and I have not heard my mum say anything remotely like "Corona Virus", Covid 19, New Strain Covid or anything else other than "whatever they keep on about on the news...."  I drew up the Bungalow Drawbridge and sprayed all the letters with Dettox and washed our hands face and space with all the diligence that I could muster.  I was, however, managing a bike ride, sometimes with a friend, sometimes on my own, nearly every day.  I would huff and puff my way back to my house in the small village several miles away, where my partner and son, who was returned from University, were in their own lockdown bubble.  We would have a half hour chat in the garden, socially distanced, apart from the cat and the dog before I would heave my unfit but getting fitter carcass back onto my bike and power my way back to mum.  This small act of exercise and connection made me able to carry on with the increasingly difficult situation that I had taken on, caring for my mum.  

The situation changed horribly however, as my partner told me one day that he had fallen in love with a woman in the village that he had been meeting while walking our dog.  The pain that this caused me was almost as indescribable as it was unexpected.  After 20 odd years I had imagined that we were going to grow old together and although we had our differences I honestly thought that we were solid in our partnership.  

It is now several months later.  I cannot with all honesty say that I am completely over it all.  I still fall apart regularly and have to attempt to sleep with an audio book on all night long in an effort to stop the unwanted thoughts and images that force their way into my shattered brain and emotions. The feeling of utter isolation though is almost constant.  Sometimes I try and imagine what my life will be like when I am no longer morally and physically tied to The Bungalow and my mother, it is not possible for me to get very far with these projections however as, for one thing, the idea that I am somehow wishing for my mother to die so that I can try and carve out a new life for myself seems distasteful and selfish in the extreme.  

So, we carry on.  Things have not changed that much in real terms, but oh! the difference to me!

I find especially difficult the new and startling feelings of anger and frustration that can suddenly overwhelm me when I am helping mum with her everyday needs, things that did not particularly bother me before can sometimes reduce me to almost blind rage and heart pumping loathing.  I can usually redirect the red  mist in a couple of seconds but it is fatiguing and upsetting.  Nevermind, things could be a lot worse and obviously are for a great many people.  This pandemic has left few people untouched in some way.   

 

The Inadequate Carer

Well, it is now a different year altogether and I am still in Lockdownton Abbey.  Having inadequately cared for my father (See The Ancient of Days) until he finally shuffled his mortal coil off towards the end of 2019, I stayed with mum for several weeks to help her through the aftermath and then tentatively made my way back home, returning every day to help her get up, dressed, eat and go to various appointments.  However, Lockdown loomed and it was obvious that I would have to return to provide full-time live-in inadequate care.  It has been a very long year to say the least.  I have no idea how long exactly, since time has become a completely relative concept in The Bungalow.

The odd thing is that, despite it making no difference at all to mum what day or time of day it actually is, she unfortunately for me, has the obsessiveness of a terrier when trying to prise the time out of the available clues.  She wears a Speaking Watch, which at the drop of a hat or indeed walking stick will be pressed and interrogated for horological accuracy.  The watch is extremely loud, and, once pressed into action will continue to proclaim every aspect of the fourth dimension at a level that can drown out passing blue light ambulances and would probably reduce Brian Blessed into a mute goldfish should he happen to be passing.  The maternal preoccupation with all things chronic is by no means a new trait,  it has however, become amplified (pun absolutely intended) over the years.  In fact, in a serendipitous twist of fate, this obsession has eclipsed the previous almost constant worry regarding The Bins, which colour Bin was to go out on which Day, which Neighbour had or hadn't put their Bin out, taken their Bin in, what time the Bin Men came that morning, have the right things gone into the correct Bin etc... On more than several occasions in the past I had been summoned by urgent telephone calls back from my house to come and put the right Bin out for the morning.  On one bone chilling occasion, I accidently mused aloud that our Bin didn't appear to have been put back at all by the Bin Men and was in fact "Missing".   A two hour search later and thankfully BinGate was resolved but I will live in fear of mentioning  anything to do with Bins again in case the trauma comes back to trigger us all into total psychotic meltdown.

Obviously neither of these preoccupations, the time or the waste receptacles, can possibly compete with the overriding default concern, indeed everything pales into insignificance when one considers the matter of  "Where is The Cat? "  This is paramount.  It is the Magnetic North of mum's declining compass and therefore must also be mine.  In actual fact, while my late father was, I had been assured by the Nurse who came to assess him after a fall, "dying" and would probably be gone in a week, maybe two, (this is what prompted me to spend another two years of my life embedded back in my parents' house - he actually took his own sweet time about it, you would think he had all the time in the world in fact) another Cat had inveigled it's furry bodied self into the household and so "Where is the Cat?!?" had morphed into "Where are my Animals?"

Two cats?  I hear you say?  Oh if only that were remotely true for my incrementally mentally challenged  progenitress, we have my niece in our lockdown bubble who occasionally comes over with her rescued tongue hanging out ostentibile French Bulldog, this creature is now part of the Animal Equation,  where are the animals? is now  totally inclusive of every animal that has ever been "my animal" alongwith many animals that were never even known to Gerald Durrall let alone our immediate family.  Much of my day and hideously my night, is spent either searching for existing animals or trying to persuade mum that we don't have those particular creatures anymore, if ever.

I have had three children, all of whom I love (to the moon and back BBZ) so, I merely state this to emphasise that I am no stranger to sleep deprivation.  However, these last years, it has been years, even though I now have no concept of time anymore, Sleep has become an elusive ghost, a tantilising thought of what might have been, what might still be, but, sadly in my case, an unattainable goal, totally unachievable for more than an hour or so, in sleep what dreams may come? I have no idea any more, I literally trudge through what I am reliably told, via the Speaking Watch, are hours.  My mother will invariably come into my "sleeping pod"  several times a night looking for the "animals" wondering where I am, Asking whether it is tomorrow yet?  I am doing this.   I am not complaining, not moaning, just sometimes, having to write this and drink a bottle of wine.   Which is what I am doing now.  Pip Pip.  What Larks.

 

 

  

 

SHMOCKDOWNTONABBEY

being as it is now day trillion and two in Lockdown I thought I might persuade myself to try and remember how to type.  Having managed to (yet again) cut the tip of my index finger down to the quick while performing some task long forgotten since it was over 12 hours ago, this is proving quite challenging.  Not challenging in the same way as, for example, pulling down a statue and rolling it to the river might be, although I feel I might rise to that one, not as challenging as signing dozens of online petitions while simultaneously managing not to allow my eye/brain focus on the horrific images of the things that I am attempting to ban, enforce, join, add my voice to etc.  What a pathetic way to protest you might think ( but, Dear Friend, there are few Black Lives Matter demonstrations in this village - indeed, it was only a few several years ago that the lady for whom I "cleaned", Let us call her "Joyce" because that is her name, received a telephone call from a neighbour, "Sheila" who apparently lost no BT Friends and Family Rate minutes in imparting the decree that Joyce was to instruct me to Shut and LOCK the doors and windows because another "friend" had telephoned her and said that there was a "big Black Man wandering around the village!"  Joyce duly, and with much gasping and swooning, relayed the instructions to me.  I asked "Joyce" whether the "big Black Man" in the communique was likely to be the guy outside up a ladder changing the street lights wearing a very distinctive East Lindsey District Council jacket?  I was told that you can "never be too careful" and to lock the doors and head for the underground bunker straightaway".....    This episode concluded with me saying something along the lines that my Partner's mother, who had died when he was a toddler, had been from South Africa and that he definitely had "African ancestry".   "Ohhh, " she said, "I didn't want to say, but I knew he was something, I just didn't know what!"....  Later "Sheila" came over to visit to make sure that Joyce had survived the rape and pillage....  "I am not a racist, I have that new doctor at the surgery, I can nearly understand every word he says!"   - the new Doctor speaks perfect Oxbridge English.
However, I digress, what I meant to say is, there is little point in my bending a BLM knee on a Thursday night due to geographical restrictions.  Hashtag- there in spirit.

The reluctant lockdown

Obviously I saw this coming.  However I still managed to forget my clean knickers.  Don't panic, she has plenty, big uns.  I am no longer worried about dying in my mum's knickers, and I am sure I am going to finish The Book of Dust.  So all good . I would love to see you all on the other side of thisn2020 cullfest. Hopefully yours cc