HARD LESSONS

There’s no denying it, the symptoms of Alzheimer’s disease can be more than a normal human being can tolerate and cracks will inevitably begin to appear in the carer’s armour.  Teetering on the edge of an outburst is not good for the immune system, which we’re busy looking after at the moment, as we should be, all the time.  Even though we’re both considered ‘at risk’, Leaf and I are lucky to be in good general health apart from a few minor ‘chassis’ problems.  

I decided recently that a trip up-country to visit old friends and stamping grounds would be a good idea.  Leaf thought so too. I arranged to stay with one couple and we visited others for lunch each day over a week, spending the last night with Leaf’s brother, Roger, and sister-in-law, Carole, in Lot et Garonne.  I was sure it would be a shot-in-the-arm for us both. After several months of steep decline in Leaf’s condition during and after the lockdown, we desperately needed a break and a semblance of normality as well as human contact and love of course.  I also realised it could be a nightmare – it was both. 

Despite provocation, all our friends coped magnificently with Leaf’s strange and difficult behaviour, not least Angie and Tim with whom we stayed every night.  To explain, I have to go back a couple of weeks ….

I noticed Leaf was going to the loo a lot and made an appointment with the doc to have another prostate check – it was time anyway.  The blood and urine tests came back okay but he has yet to have the echography.  At home, his frequent bathroom visits were routine in familiar surroundings and therefore not a problem, but in other people’s houses where he needed me to take him every time, they were a problem.  He couldn’t remember where the loo was and which was the bath, the bidet, the basin or the loo itself!  

The first couple of nights were hell, he was up at least a dozen times and neither of us got much sleep.  Every time I nodded off, he needed to go again – or thought he did.  We took to restricting his liquid intake after six o’clock.  After that I resorted to giving him sleeping pills which helped until the dawn hours when the effects wore off and we were back to square one for three or four hours.

On top of the loo visits, we had to contend with clothes being taken on and off and not just his own!  Chairs being moved around, cutlery and other items on the table being moved or re-arranged.  Drawers and cupboards being investigated. Doors and windows being opened or closed and lights left on (I have an eternal round of this at home).  He helped himself to food and drank from other people’s glasses.  General table manners these days are fast disappearing and he’s become a messy eater.

As usual, much of the time he talked gobbledegook that was impossible to understand, let alone respond to.  He had a couple of goes at me for things I hadn’t done or for being unpleasant when I hadn’t been and even snapped at Angie.   She and Tim witnessed several sulky interludes.  

Through all of this, we managed to keep our cool and, surprisingly, had a few laughs.  Once when he appeared with his leg stuck in a shirt sleeve and Tim’s T-shirt on, we were unable to contain ourselves and luckily Leaf was able to see the funny side as well.  I have to help him dress correctly and he finds it hard to process the idea of dressing and undressing.  On/off, on/off is typical, particularly when going to bed.  And he can get really cross with me for trying to help him.  

Despite all the problems, he said he really enjoyed seeing friends again and was able to communicate, up to a point.  Others talked rather too much for him at times, but that’s because he can’t join in.   We took the ‘catalogue’ of his paintings and everyone loved them, we even sold some!  That gave his spirits and confidence a big lift and I know our friends were not just being kind.  The paintings are truly lovely.   It’s really sad that he can no longer produce good work.

The weather was great, if a little too hot at times, everyone catered very generously for our vegan-except-for-eggs diet and a lot of love came our way.  

This little holiday and the last few months have taught me much.  I now know for definite I cannot cope alone for much longer, so the task of finding a live-in helper is priority.  I have the total support of friends and family who have experienced just how this disease can manifest itself.

I admit to feeling really bad when I know there are others ‘out there’ who are caring for a loved-one with AD and lots of them are coping far better than I am.  Most of the time I’m patient, calm and loving, but there are moments when I cannot contain my frustration and I say what I feel.  I have to let the cork out of the bottle.  It’s a godsend that whilst Leaf gets upset, he forgets very quickly.  I, of course, don’t.  He lives in the moment, whilst I live with an ever-increasing backlog of frustrations.  My reactions are absolutely contrary to the advice that is handed out to carers.  I often wish those who tell us how to respond to every type of behaviour, would come and relieve us for a few days!  Even then they would know there’s an end to it, whereas I could have at least a decade of caring in front of me.  This thought fills me with dread, so I’m determined to find ways to make the time go bearably.  I will proceed in increments – always with a new goal ahead, even if only a little one.

Of course I can’t help but wonder, as must we all, what the future has in store for us.  One of the ways I’ve managed to maintain at least an element of sanity and distraction is to research current events, from the nature, origins and seriousness of CV19 to the Global Re-Set as announced by the WEF at Davos in January.  I do not intend to go into what I have read and bookmarked – at least a hundred web pages and videos on every aspect of the situation – but I will say that, having embarked on this journey, I have concluded that numerous people live in their own little bubble; what horrors might be going on in the rest of the world, don’t seem to be of much concern.  Another lesson learned.  

Here in the gorgeous countryside of South West France, most of us ex-pats lead highly privileged lives.  Populations are sparse, nature surrounds us and we nearly all have gardens and a reasonable income – we’re predominantly retired and have pensions.  It’s easy to forget that the majority of the world’s population live in cramped, unsanitary conditions in great poverty and having a job is a privilege.  For the majority of us, the lockdown was an inconvenience but we spent the time productively and, in many cases, enjoyed the restrictions and said so.  Fair enough, but where was/is the disgust, indignation, the expression of genuine empathy that we actually care deeply about those whose lives have been totally wrecked by the restrictions?  We go around in our masks, (anti) social-distancing and being generally judgemental of those who question the wisdom, and compassion too, of governmental orders.  For the greater good?  Pardon!

Having suspected there is much more to the story, a few of us have chosen to research and decide for ourselves the truth behind the draconian measures imposed upon us.  We do what we have to re. the restrictions and some go out onto the streets and shout.  When the mainstream covers these events, if it reports demonstrations at all, it will likely call those who take part neo-Nazis, anti-Vaxxers or Antifa terrorists, when the word ‘dissenters’ would be the most accurate.

Leaf and I are aware that voicing our opinions can lose us friends, so we have to decide whether those that disapprove are really friends at all.  

Just like with Brexit, BLM and the sex wars, we’re all being labelled and divided.  

For good or evil, time will reveal The Truth.  For the moment, I would like to quote from Lord Sumption (interesting short interview):

What sort of life do we think we’re protecting?  There is more to life than the avoidance of death.  Life is a drink with friends, a crowded football match with mates, a live concert.  Life is a family celebration with children and grandchildren. Life is companionship, an arm around one’s back, laughter or tears shed at less than 2 metres.  

These things are not just optional extras, they are life itself.  They are fundamental to our humanity, to our existence as social beings.

And a message from Leaf and I and, I am sure, millions of other older folk, including my 90 year-old sister:

We relinquish any claim on the lives of the young as oldsters who are presumed to be particularly susceptible to the ravages of Covid 19.  We will not ask anyone to sacrifice days, weeks or months of their time, love, life and livelihood on our behalf.

Go live your lives, enjoy the beautiful summer weather.  We have no claim on you for our welfare.

We’ve had great lives.  If we die tomorrow our final wishes would be that future generations will be permitted the same freedoms that we’ve been privileged enough to enjoy.