Brighton Philharmonic Orchestra, 28 January 2018 (Susan Elkin reviews)

My paternal great grandmother lived until I was 16. Throughout my childhood I watched my grandparents carefully and lovingly looking after his mother even when she was difficult (which was often). A few years later, her son, my grandfather succumbed to throat cancer. Cue for us all to rally round and be there for him and for his widow, my beloved Grandma, who lived on into her 90s and my 40s.

Although we weren’t quite so local by then I used to visit Grandma every couple of weeks and spoke to her on the phone weekly. And she would come to stay with us regularly. Meanwhile our own boys were growing up and willing and able to be involved. In fact, with strange generational symmetry, our eldest son was 16 when his great grandmother died, exactly as I had been.

Since them, inevitably, all four of our parents have died (most recently, Father-in-law in 2014) and again as a family we have all – in our different ways – been there to support each other though illness, sadness, loss and loneliness quite often tempered, of course, with jokes and laughter. My father used to tease his grandmother rotten – no one else could have got away with it – but by golly he loved and looked after her. And I saw exactly the same pattern in our sons as their own grandparents gradually ailed.

It’s like a baton in a relay race. One generation observes how the previous one does it and then takes it forward.  Or at least that’s how it seems to have worked for us – over and over again.

And now that Ms Alzheimer’s has staked her claim on My Loved One, it is our turn to be supported and looked after. I’m sure our sons, partners and children (our oldest granddaughter is 19) have talked about it quietly amongst themselves because I see kindness and astonishing acts of support all the time despite the fact no one lives particularly close. “Pay-back time” I suspect they call it.

The “boys” who have, between them, enough practical professional skills to staff an entire building company, have each done an enormous amount of work in the house we downsized into 16 months ago. And they’re been on hand to advise almost continuously. I’d never have got it sorted out and created the lovely home it now is without the pair of them.

So I want to go on a music course in May. “Just send me the dates” says our elder son who means he will come and stay with MLO and Ms A while I’m off duty. When the arrangement I’d made collapsed, he has willingly agreed to do likewise next month while I visit a friend in Yorkshire too

Then there’s the week in April when MLO and I are on holiday for a week. No sooner had I booked than I discovered that I couldn’t get Catus Domesticus into the cattery which had the effrontery to be fully booked. “Oh don’t worry” says elder son immediately. “I’ll base myself in your house and work from there”. That’s yet another week away from his own family although I hope his wife will join him for a London weekend with shows and so on. It also means we get a house sitter as well as a cat minder. And, I expect, odd jobs will be done in our absence. Hero! I shall make sure there’s plenty of beer in the fridge.

We have decorators in at present. “I’ll pop up in the morning between jobs and take that radiator off the wall” said younger son last week, casually referring to a 60 mile Brighton/London trip. “I don’t want the decorators messing about with it.” And he and his partner (who have a very young family) cheerfully put up with us taking over their house every time I review a concert in Brighton which happens frequently. His long suffering partner never complains if he comes to us to do a job which overruns so he ends up staying the night either.

In short, life is not always easy these days, but we are blessed in our fantastic children and their families and that’s an inestimable bonus. People in the know often say “I hope you’re getting the support you need”. They mean from health services, voluntary organisations, social services and so on and I know that such things will be there when we need them. At present yes, we are getting a terrific level of support – all home grown. And I am learning to feel deeply grateful and accept it with grace while never taking any of it for granted.

Thinking about the past and watching the patterns repeating themselves over the generations I’ve come to the conclusion it’s a case of reaping what you sow. Or doing as you would be done by. I’m not sure, though, that cantankerous old Great Grandma ever said thank you. I do. Often. And my goodness, I mean it.

Lots of Elkins, soon-to-be Elkins and close-to-Elkins at Margate in summer 2016.

Much ado about light bulbs in this household recently. Back in the days when Mr and Mrs E were able to manage their own lives and act on their decisions without a fuss, light bulbs were not an issue. Now that we have Ms Alzheimer’s living with us, they are.

Light bulbs used not to be on my job sheet. He bought the ones we needed, made sure we had spares and fitted them as required. And I, of course, took it completely for granted. It’s different now. So I have acquainted myself with lumens, found out what they mean in terms of the wattage I grew up with and bought bulbs for every room in the house that we moved into 16 months ago.

But I didn’t get it quite right. Some are too bright and harsh. Others are so dim you can’t see to read a book. Then I had an idea. I said: “While I’m busy writing this review could you do a little job for me? Please swap the centre light bulb in the sitting room with the one in the spare bedroom.” I really don’t think I could have expressed it any more clearly. And it’s really vital, I’m sure, that My Loved One is allowed to feel there are helpful things he can still do.

When I looked up from my work half an hour later, I could see – through my office’s glass door – that he was on the landing, removing the light bulb. Very carefully and earnestly on a small set of steps he was trying (but failing!) to be useful. When I raced out to see what was going on I found he had taken centre the light bulb out in our bedroom and the dining room too with the result that I then had no idea which bulb was where anywhere in the house. I sorted it in the end of course – by doing it myself on the steps but it took a while.

It was a worrying indication of the uncomprehending fog that Ms A has generated in MLO’s poor, tired brain. He had, I fear, no real idea what I had asked him to do but didn’t want to say so. He simply had a vague idea that I wanted light bulbs swapped so that’s what he was doing – more or less at random. It is, for anyone whose brain is functioning normally, almost impossible to imagine how this muddy muddle must feel to the victim of this horrible illness.

Then, this week, came a light bulb moment of a different sort, courtesy of a The Daily Telegraph story. It was the first Alzheimer’s research report I’ve read which made any personal sense at all. A UCL/Kings College London study of 3,400 civil servants conducted over 30 years has established that in some people, retirement triggers dementia. Use it or lose it seems to be the message and they don’t mean word puzzles and sudoku.

My Loved One was made redundant (by a new-broom CEO) in 1992  from a busy job as education officer for a professional body. It took him routinely all over Britain and, on one occasion, to the Far East to meet his institute’s students. He was very busy, focused and dynamic. When the axe fell he was in his late forties.

It wasn’t, in the early 1990s, an easy age at which to start again. There were a couple of short term contracts but nothing more. So, for many years – until Ms A arrived – MLO worked in my growing writing business. He did accounts, invoices, filing, admin (booking hotels, rail tickets et al on my behalf for example) and doing some of my more straightforward information-gathering research and interviews. He also ran the domestic side of our life like clockwork so that for decades I never ironed a shirt, changed a bed or bought a potato.

It was, however, all home-based and not – I suppose – the intellectual stimulation that going out every morning, be-suited with briefcase, and working with lots of other people had been. Some would say that, effectively, he retired before he was 50.

Could it be that over 20 years at home has triggered the arrival of Ms A at a relatively young age? MLO was 71 when he was diagnosed last year. We shall never know. But, as far as I’m concerned, it vindicates my own decision (made long ago) that, while I can possibly manage to work at all, I am most definitely not going to retire. My friends, many of whom seem to be having a lovely time doing not a lot, disapprove with passion. But we’re all different and I am certain that this is the right thing for me in my situation. I often say, flippantly, that’s it’s work which keeps me sane Perhaps it’s truer than I realise.

Alzheimer’s research hit a bit of an impasse last week. Pharmaceutical giant, Pfizer announced that it’s pulling out of it which seemed, at first glance and from where I’m standing – alongside My Loved One and the ever-predatory Ms Alzheimer’s –  pretty damned negative.

But read beyond the headline. It’s still negative but, in fairness, you can see Pfizer’s point of view. Their aim has been to find and develop a drug which will make a real difference. In the last fifteen years 99% of clinical trials have ended in failure. So – objective thinking and all that – it’s hardly good business to throw any more money at it. And it isn’t just Pfizer either. Eli Lilly in the US and Roche and Merck in Europe have all seen their “breakthrough” Alzheimer’s drugs fail at the final testing.

Scientists and commentators are beginning to hint that we may be getting ahead of ourselves. We simply don’t (yet) understand the connections in the brain. Received wisdom – all the way back to the eponymous Dr Alois Alzheimer who, in 1906, conducted an autopsy on a patient with memory problems and observed sticky clumps between the dead and dying cells – cites amyloid protein as the culprit.  But, it seems, drugs to combat these clumps of amyloid  don’t work so is the cause actually something else? Back to the drawing board, a mere one hundred and eleven years later. Some are saying that we need to return to basic brain research because we still don’t understand the workings of a normal brain well enough to be able to work out what happens when dementia sets in.

Other scientists take an avertive line. They want to find ways of identifying the disease a decade or two before its symptoms start to show because perhaps then the amyloid could be destroyed or dispersed with drugs in good time. The theory is, that once the patient, has become forgetful, clumsy, sleepy or whatever the disease has already taken hold and it’s too late to do anything about it.

Or perhaps they should focus on why – if it has – amyloid has built up in MLO’s brain but not in mine? What are the factors which allow it to happen?

And where does it all  leave MLO – a statistic in a huge horrifying, downward spiral. He is one of 850,000 dementia sufferers in the UK. Most of these have Alzheimer’s. One person in ten over 65 has dementia and one person in three if you are fortunate (or should that be unfortunate?) enough to live to be over 85. The current cost to the UK economy is £26m per year. Obviously, the figures are rising continuously.

This is unsustainable. If they don’t soon find some sort of drug to alleviate Alzheimer’s effectively then within twenty years we shall have voluntary (or maybe even involuntary) euthanasia for economic reasons. Ethics and morality will be luxuries that we, and other developed nations won’t be able to afford.

I’m sure  the efficacious treatment (or the hideous alternative) will come too late to make any difference to us. MLO and his 849,999 fellow sufferers simply have to cope with life as best they can for as long as they can. There are drugs at the moment but medics don’t seem to have much faith in them. They just keep telling you firmly that the disease is incurable. MLO is prescribed memantine which might – or maybe it’s my wishful imagination – be making him a little more alert.

It’s a horrible disease but, as I keep telling MLO, things could be a lot worse. He is still physically pretty good and can walk about and climb stairs although he’s much slower than formerly. Nothing hurts and there is no prospect of invasive surgery or debilitating treatment as would be the case with, say, cancer.  And after all research hasn’t stopped altogether. Always look on the bright side. …