Bereft

•January 3, 2016 • Leave a Comment

Now it’s 2016, almost six years since I began this blog, a year which my mother won’t see.  It may sound strange to say this about someone who we’ve known had a terminal illness for several years, but mum’s death on 6th November seemed to come out of nowhere and was for me, at least, a surprise and a shock.  I had been talking, thinking and writing about the fact that mum was leaving us for years so you would think I’d be fully prepared for the event and the fact that life would go on afterwards.  But for some reason – maybe it’s the winter season, I just don’t know – these days, now almost two months since we saw mum take her last breath, are days I didn’t anticipate or predict, and I can’t yet see how I’m going to get back to being the person I was back when mum was still her demanding, unique, infuriating self.  

 

We’ve had the first Christmas without her.  It was a lovely, joyful, classic, family Christmas.  My children left no stop un-pulled out to mark the occasion with cheer, family customs, lovely food and drink, and thoughtful comforts for me.  We’ve had the first New Year and I’ve had my first birthday without her.  We went into the sadness zone a couple of times but by far the predominant characteristic of it all was joy at being together and happy.  Now it’s really time for me to pull myself together, shake myself up, start making plans, start feeling positive.  And so far I am having zero success at this.  I just feel as if I want to light the fire and sit in front of it for hours and hours.  Even my garden, which has been my joy as long as I have had one, just looks like a muddy fungus farm right now.  I can’t see any point in investing time and energy on it.  

Or on anything else.  I should be cleaning house right now, but I’m not, and I suspect that when it gets dark again in about four hours time, I still won’t have.  I should be planning a taiko performance, I should be booking my ticket to Japan for cherry blossom season, but there’s no joy in it.  I’m stuck in the slough of despond.

 

Mostly I can’t get past the dreadful images in my mind of what mum looked like the whole of that last day, at the moment of death, and after they had laid her out.  A train of logical thought is trundling all the time towards the conclusion that this is what’s in store for us all, probably not far ahead now, and in the meantime I can look forward to all that mum went through between here and there, the loss of memory, personality, dignity, autonomy, the capacity to give pleasure to others.  This is a train of thought I’d rather not be riding but I can’t find the emergency cord to pull and stop it in its tracks.  These are indeed dark days.  IMG_20151108_173552

Forgetful Lucy

•January 12, 2015 • Leave a Comment

I’ve just finished watching a movie called “50 First Dates” – not the first time I’ve seen it.

It’s a sweet, thoughtful, challenging comedy about a guy (Adam Sandler) who lives in Hawaii and falls in love with a girl (Drew Barrymore) who has lost her short term memory and wakes up every morning thinking it’s the same day, the day when she was injured in a silly car accident, damaging her temporal lobe.

Judging by the dedication at the end, I would guess that the star, Adam Sandler, lost a father to dementia.

I’ve avoided watching this but just lately I have wanted to re-visit it and it has given me a lot to think about.

 

The first time I saw it, the concept of short term memory loss was just a comedy device to me.  I thought this was just a humorous  riff on the nature of love.  That was before my mother’s dementia became obvious.  I see it now with very different eyes.

 

The idea of forgetting everything that happened today is a pretty cute one when combined with a lovely, smart  young woman and a passionate, quirky  young man .  Both are in good physical health and have people who look out for them all the time. But as the Sandler character says in a particularly painful exchange with the girl’s father, “What happens down the road ?”  When a  loved one in advanced old age has near-total short term memory loss, it’s a different story.

 

Memory is not just a fun thing to have or a handy accessory for dating.  It might (though I doubt it) be  entertaining to answer the same question 50 times and enjoy 50 first kisses but it’s not at all entertaining when the same question comes up dozens of times a day, month after month, and has to be answered every time as if this is the first time.  Memory is to a very great extent what makes us who we are, what makes us civilized, what makes us human.  Take that away and you are left with the need to help someone reconstruct the world they find themselves in, almost from scratch, every single day.  If someone doesn’t do this for them, a person with memory loss slowly loses what made him or her a unique, special individual who was known and loved, becoming a sort of living ghost.  Not funny at all, and that’s without going in to all the other functional breakdowns that come when we revert to early childhood – the toileting emergencies, the reluctance to wash, the petulance, the loss of empathy.  I can’t see anybody making a comedy out of that.

 

There’s a song that the hero sings in this film on one of the many first dates he has with Lucy, the heroine – a day when he hits upon the happy ruse of making a videotape (it’s quite an old film) to play to her each morning to bring her up to speed with the time she’s lost and explain why there’s a strange man in her bed (and later, presumably, an unexpected foetus in her womb).  It’s such a sweet, lovely song: “Forgetful Lucy”.  Watching the film tonight it brought a tear to my eye.

 

These days when I go to see mum, as often as not, she is sitting with a roomful of other very old ladies, listening in rapture to a DVD of a concert which the care home staff have discovered has a calming effect on them.  So she is not hearing or seeing it for the first time, but from her point of view, she is, and it’s magic.  She especially enjoys “Ave Maria” and I can see why – the singer has an exceptional pure, female voice and the melody is so generous and forgiving.  But I can’t cry about it in front of mum because she wouldn’t understand and it might upset her.  So I just say (again) what a wonderful voice that is, and then again we have the same conversation we’ve had every day since she has been there about how there are lots of strangers about (visitors) and how the lady next door to her is a single lady and how long it’s been since my last visit (usually one day).


The film declares that love can overcome the absence of shared memories.  I wonder if that is true.  I guess in the next few years, or however long the dementia process is going to continue, I’m going to find out.

the long view

•April 17, 2012 • 1 Comment

Image

Recently I walked into a room in a flat in Hackney and in very short order found myself holding in my hands a tiny naked person less than an hour old who was barely covered by a skimpy green towel and in urgent need of a number of things, including warmth, food, safety, and a bit of a cleanup in the arse region. In spite of the fact that it was precisely in order to help provide these things that I was present, (not to mention my supposed fitness for the job on the grounds of having produced and raised two such tiny beings of my own),I couldn’t quite believe that anyone would trust me to do something so momentous without strict supervision. There was a period of, oh, about 15 seconds there where I just stood with this scrap of life in both hands looking around stupidly for a suitable surface to put her down on while I located the cleaning materials. Shortly afterwards there was the overwhelming sensation of wrongness about defiling the beauty of such a perfect work of nature by enclosing her tail end in a newborn Pampers. I can tell you it was with a sense of some relief that I located a suitable blanket, wrapped her up warmly, and tiptoed cautiously back downstairs to hand her back to her mum and dad. Like having successfully passed on the baton in a very short relay race. But then, meeting my grandchildren for the first time has always felt a bit like that.

People tell you how great it is to be a grandparent but exactly as with parenthood, you don’t get it until it happens to you. I will just say that one of the many very excellent things about having children is the arrival of the grandchildren. Not least of the joys grandchildren bring is the chance to ponder anew, up close and personal and with much less fear and trepidation (remember, you’ve passed the baton) the mystery of it all, as you meet that thousand-yard stare that seems to see beyond you and all the way back to wherever it is they’ve just come from.

Sitting in the sun on a quiet afternoon while the new mum grabbed a little sleep and the newborn did the same in my arms, I thought about my own granny and did a few computations and came up with a surprising realization.

I remember my maternal granny well. She lived with us and was one of the most important people in my life until about the age of 12. She was born in the 19th century, in 1892 . I inherited from her a little book of National Savings Certificates, containing stamps valued at 2 shillings and sixpence or 5 shillings, which she bought and licked and stuck for me around the middle of the 20th century, when I was less than one year old. I have given that book to my own first granddaughter in the hope that it might yet bring in a Premium Bond win for her some day. Now, nearly ten years on, in the second decade of the 21st century, here is my second granddaughter. With my grandson, aged almost 5, I have the joy of knowing well and loving three people who, it is reasonable to hope, will see in the 22nd century. In my lifetime I will have loved five generations of my family whose lifespans, taken together, could well take in four centuries.
And you know what ? It kind of, almost, makes me feel a little bit immortal.

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fearful symmetry

•February 21, 2011 • 5 Comments

Mums are superhuman, aren’t they.  This is a truth universally acknowledged by 3-year olds, but if we live fortunate lives, it is not until very late in our own day that this particular bit of world foundation crumbles.  When I hit the wall on this one quite recently, it took less than a month from exulting publicly on Facebook about how much in awe of my mum I still was/am, to providing the care you would give a baby to that same mum.  Things are much better now, but there has been an irreversible change.  As I attempted to practice Sit-There discipline while mum struggled back from the dream world of infection-induced delirium, I had lots of time to think about writing this blog, but none at all to actually write it.  Then we had science-fiction-style snow, and Christmas, and then I absent-mindedly went out and got a job, about which more later.   I will try to summarize what I’ve learned so far.

Thing One (that I’ve learned):

The onset of serious illness in the mid-80s is something everyone thinks they are prepared for but in fact most people, including the octogenarians themselves, are not.  The remote village where my mum lives is full of people, some living together, some living alone, who are right on the borderline of being able to take care of themselves. The big division among these people is not between those who have families and those who don’t. Those in the second group are obliged to accept residential care earlier than those in the first group, but that is not the significant difference.  The big division is between those whose family and social network is strong enough to keep them going against the odds in independent life, and those where that network can’t handle the strain.   Call me naive, but only now have I begun to realize what a challenge this is going to be.

Quite by accident, I was with mum when she suddenly became ill and right there and     then,  I found myself staring straight down the gunbarrel of everyone’s assumption     that, as the daughter, I would (a) stay and be her carer for as long as necessary and     (b) be able to handle the sacrifice of my own life and timetable which this would     involve.  (I’m sure my brother felt it too but this is MY blog 🙂 )  By “everyone” I don’t  mean my own children, siblings or grandchildren.  I mean the GP, the locum, the paramedics, the receptionist, all the neighbours, the consultant, the junior doctor, the  nurses, the occupational therapist, the Social Service workers, and the close personal friend of mum who is himself struggling with memory loss and the need to give up     driving his beloved car before he kills himself and/or someone else.   It was some help  to be reminded that everybody who reaches their 60s with surviving parents is in exactly the same boat sooner or later ~ BUT.  I was not at all ready for this.

* Here’s an example.  When I finally managed to get a doctor out to see mum who  was able to recognize that she had something considerably worse than seasonal flu,  he called an ambulance right away and then moved on to his next patient.  Mum was  delirious, but she realized that we wanted her to go to hospital.  She did not want to go.  She hid in the shower and countered all efforts to persuade her out (by me, her friend, and the paramedics).  Finally the ambulance crew pointed out that they could  not force her to go, and suggested they would go round the corner for 15 minutes while I talked her into it.  All four of the people in the house looked at me.  “Will she     travel ?” asked the ambulance driver.  This was my responsibility !  I would have to  persuade my delirious, imperious, superhuman mother to do something she hated,     and nobody else could do it for me !   Since I had no means of time travel into a future     where the problem would be solved, I had no option but to say “Yes”.  And she did     travel, but now she has no memory of it.  In fact, she reports having no memory     whatsoever of anything that happened over a period of almost a month, during which     we had to make major decisions on her behalf and provide her with intimate personal     care.   This is role reversal with a vengeance.

Thing Two

The various kinds of deterioration – both physical and psychological – which are for almost all of us an inevitable consequence of advanced old age are very, very hard and painful to confront.  It’s hard to look them in the eye, whether you are the person involved or that person’s children.  For the previously-independent, self-reliant individual involved, the loss of control is so painful that some associated memory loss is probably a blessing.  For that individual’s children – and here I speak purely for myself – there is a very frightening insight into what may now be only a decade or two into our own future.  As with classical tragedy, the two ingredients of Pity and Terror are powerfully present.  When my dad was only 73, he died quite rapidly from cancer.   That was one kind of process which at the time seemed appalling, but the period of powerlessness which he experienced was mercifully short – a mere five days.  With mum, we have had a four-week preview of what may last much longer.  Now that she has made a full recovery, nearly everyone, mum included, is in a sort of denial that she was ever really that ill.  But she was, and there are consequences from that.

Thing Three

Once you start to confront these realities, you begin to get a profound sense of the symmetry of our lives.  We all begin helpless, dependent on the love of family and the strength of the wider social network to support us and get us launched, and as the final decades wind down we return to that dependence, one way or another.   I don’t mean to sound dramatic, but our generation – the much-mocked Baby Boomers – really is the first in human history where it’s routine to have strong social ties and responsibilities stretching across at least four generations and spanning both our parents and our grandchildren.  We get to witness and, if we are lucky, assist at many arrivals and departures, and in so doing we have some awesome opportunities to contemplate where we ourselves fit into this circle, or wave, or whatever the hell the scary thing is that we call living.

Last Thing

When things at large are terrible, there are still pleasures in small things.  In mum’s and my case, it was starlings.  Each evening we saw them passing, clearly going home to roost.  Now that mum is better, I have found out where that roost is, and last week we went there and watched the roost.  It was transcendentally beautiful. 

    Here

is what it looked like.

Sit there masterclass

•June 10, 2010 • Leave a Comment

On Naxos, we visited the village of Chalki at the foot of Mount Zas.  This was our sole attempt at ‘seeing the island’ en famille since the beach was too gorgeous for all of us to abandon it at the same time.  As we walked down the steep gradient into Chalki we came to this spot.  A very old, white-haired man was sitting in THIS chair, attended by a sleeping cat. 

Sit there masterclass

deserted chair in Chalki

I could see at once that he was a sit-there expert and could teach me a thing or two on that subject.  However, no sooner had I whipped out my handy mobile talking-playing-messaging-gaming-picturetaking device than both he and the cat more or less dematerialized – at any rate, when I looked up from fiddling with the thing to take his picture, he was no longer there. 

This, I think, was the lesson he was teaching.  I was clearly not yet even a padawan learner in the art of sitting there.

Σιγά-Σιγά

•May 22, 2010 • Leave a Comment

Starting from Monday I will be doing as much nothing as possible while staying on the Cycladic island of Naxos with my lovely daughter and her family.

The trip will start with 4 hours of sitting there on the train on the way to Brighton (Hove, actually) followed by more sitting on the plane to Athens and (this is the best bit) the ferry from Piraeus.

I have fond memories of the last time I did this, in July 1968. At that time there was a hit pop song called Σιγά-Σιγά by a French singer, Ricardo Credi , backed by ‘Vangelis Papathanassiou and his Orchestra’.  Yes, THAT Vangelis.  I mention this here because  ‘Σιγά-Σιγά’ is a Greek phrase meaning something very similar to ‘slow down’, ‘take it easy’ or ‘what’s the rush’, and is a very good motto for this blog.  It’s pronounced, more or less, ‘cigar cigar’.

While doing Σιγά-Σιγά on Naxos it is very likely that I won’t blog at all.  I will just sit there  on this beach, accumulating points.  Or I might do some snorkelling.

heart land

•May 20, 2010 • 4 Comments

I tweeted recently about the smell of Warwickshire, its characteristic mixture of mud, nettles and hawthorn blossom.  Today while riding my bike home from Poundland I took a short diversion along the Old Tramway and this is what I saw. 

Take a deep breath and smell it.  That’s what I’m talking about.

 

 

 

 

 

 

 

 

 Sit-there progress report: I meant to sit in this meadow until the sun went in.  Just me, several acres of buttercups, and some butterflies.   Instead, I wasted time taking pictures of it and the sun did go in.  Sit-there points achieved: NIL