One of the hardest things about life with Ms Alzheimer’s, as she slowly but ruthlessly tightens her grip, is recognising and accepting the devastating truth about where you’re heading. And holidays are a particularly difficult time because, sadly and stressfully, they force you to confront that reality. It’s partly, I think, because if I’m not racing about working manically, I have time to think and reflect. It’s also because it’s impossible not to compare the current holiday with earlier remembered ones.

Not so many years ago My Loved One could drive a powerful hire car on confusing (to me, at any rate) eight lane motorways in the US. Today he cannot descend a flight of steps unaided. In the recent past he would have booked flights, accommodation, ordered currency and arranged insurance. He doesn’t have a clue about any of that now and all the admin falls to me. Until two years or so ago, on holiday, we’d spend whole days out and about seeing or doing several things each day. The new MLO can sometimes manage an hour or two before he flags, but not always.

We’ve just spent eight nights on holiday in Washington DC. By the time this is posted we shall be home although I’m writing it on our last day in the US. Why Washington? Well, we both had fond memories of visiting Georgetown on a trip a few years ago when we then picked up a hire car and headed south to Baltimore, Maryland and on to Virginia and MLO had said several times he’d like to revisit. So I fixed it. I had misgivings, of course, but I carefully ignored them.

I booked special assistance at the airports and it worked very well –  a new experience for us. Of course he doesn’t normally need a wheelchair but unsteadiness and inability to stand in, for example, queues for more than a minute or two meant that it was really useful. It also meant I had a helper to look after him while I dealt with hand luggage etc – I only have two hands and two arms, after all.

Once airborne there was continual confusion about where we were going and why. Halfway across the Atlantic on the outward journey, he thought we were heading for Heathrow, for example. I must have reminded him a dozen times that we were going to Washington. I think cabin pressure or altitude (or something) worsens the effects of Alzheimer’s. I noticed this twice last year when we flew to and from Malaysia and Greece.

Making decent use of the time while away is another problem because I have to deal with his often feeling unwell and not wanting to do anything. It’s easy to delude oneself that this is apathy or lethargy but it’s really just the illness. Fortunately I’d booked one of those American “suites” which gives you a sitting/kitchen area attached to the bedroom so “staying in” was reasonably comfortable. And sometimes I left him resting and went out on my own – bliss to be able to stride along at my own natural speed and be temporarily “free” although I’m ashamed of the thought.

We did, however, manage to take in Arlington Cemetery, Smithsonian Museum of American History, Dumbarton Oaks and Oak Hill Cemetery as well as exploring Georgetown pretty thoroughly. We also walked through the White House and Lincoln Memorial area and on the last day went to Newseum, a powerful and moving history of news/journalism which seemed to have my name firmly on it. At each of these, though, time had to be limited and I had to make sure that MLO could sit down as often as possible. The jury is out, though, on whether we really got value for money overall in terms of sightseeing.

I was hoping I’d get a rest and I suppose I did to an extent. It’s not very relaxing, though, to have to be alert for problems all the time and to assume full responsibility for another person. It often reminds me of having a small child again (I even now have to oversee choice of clothes, collect his buffet breakfast and open the butter packets etc for him) especially during the night. I’ve learned to snap awake instantly if I hear him stumbling about doing anything other than just going to and from the bathroom. He has very powerful Alzheimer’s-driven dreams and often gets very confused. It means I have to be able to reassure him calmly irrespective of how deeply asleep I might have been. As a young parent I did this and more, of course but it was … well never mind how long ago but I was a little shorter in the tooth then.

The problem with holidays is that they are, by definition, a break with routine and that’s not good for someone with Alzheimer’s so I’m left wondering what, if anything, to do about holidays in future. Maybe a cottage somewhere not too far away that I can drive to and then recreate home routines within it while we get a change of scenery? In all honesty I think Washington was almost certainly our last long haul holiday. Pity really, I love travelling far afield, especially in the US, and I’d dearly like to see my friend in Australia again. Trouble is that Ms A has her hideous fangs buried in her husband too so it looks as if neither of us can travel.

So the chances are that I shan’t get to see the orangutans in Indonesia or the Taj Mahal after all. Not that I can possibly complain. We’ve travelled a lot in the last 15 years or so and I’m lucky enough to have seen wild bears in Canada, rhinos in S Africa, aligators in Louisiana and, marvellously, a platypus in Tasmania. There have been many other wonders too, both natural and man-made, from the Petronas Towers to Table Mountain and Sydney Opera House to the Grand Canyon.

It’s just very hard indeed to accept that the best is probably behind you.

Readers of these blogs, who don’t know me in person, often kindly tell me what a patient, kind and loving person I am. Well I suppose I’ve created an online persona – if only I could live up to it. The stark truth is that, most of the time, I’m a brusque, crosspatch sort of individual. And I don’t, on the whole, “do” slowly and never have done.  I was absent when “sweetness and lightness” were given out – racing about trying to get some job done, I expect. Former pupils, with retrospective affection, have often said that I scared them silly. I never meant to but there it is …

When I was a child tiresome grown-ups would intone preachily at me: “Patience is a virtue which can be acquired”. (It was the 1950s, not the 1850s by the way).  Well they were all wrong – about me anyway – because I’ve never acquired it. And that’s one of the main reasons that I find Ms Alzheimer’s such a very difficult presence. As My Loved One gets slower and less comprehending I get crosser and more impatient – as if we were the painted couple in the weather forecast ornament my grandparents had: always moving in opposite directions. Then, of course, I feel terrible and beat myself up for my own shortcomings. He can’t help the state he’s in. And I know that so I ought to be able to control my irritation.

One of the hardest things, for an impatient person like me, is MLO’s habit (and it’s only come with the illness) of constantly interfering with things. I load the dishwasher and set it running, for example, only to find that he’s opened the door half an hour later and interrupted the programme because he wasn’t sure “what was going on”. He’s constantly fiddles with the day’s newspapers too often throwing into the (wrong, invariably) bin the bits he doesn’t want to read before I’ve had a chance to look at them. Worst of all is his “hiding” things. He thinks he’s put away, say, the outdoor short-handled brush (currently missing), the tin opener or (twice in the last few months) a quite large and important cheque. He then can’t remember where he put it and I of course have no idea so the item is effectively lost. I can buy a new brush or tin opener but getting a cheque re-issued is a tedious business.

Then there’s his inability to hold information even for a few seconds. “What can I do to help?” he’ll ask. “Can you empty the airing cupboard? Just take everything upstairs, put in on our bed and I’ll sort it from there.” I answer. Ten minutes later I find him scrabbling about in a food cupboard: “You wanted me to do something in a cupboard …?” Grrr.

We have, and have had for decades, a large folding table known as “The Gopak”. Think school dinners. We use it as a supplementary dining table when we have a crowd and it lives, folded in the space between the fridge freezer and the wall. The ironing board sits neatly on the other side of the fridge freezer – two useful storage gaps. MLO recently decided that he would iron a shirt. Quite unusual for him now but OK if that’s what he wanted to do. Then he came upstairs to tell me he’d done something silly and was in a muddle. I went down to find the kitchen almost filled with the 10-seater Gopak. Well, when your brain is functioning normally it’s pretty difficult to get your head round someone who can no longer tell the difference between a camping table and an ironing board. I try but …

Standing at our local station awaiting a Blackfriars train en route to a concert at Cadogan Hall last week we narrowly missed a through train to Luton while I was, as usual, laboriously helping him down the steps on the footbridge.  I said chattily. “It’s OK, that train’s going all the way to Luton, Our train will we here in five minutes”  A few moments later I asked him: “Do you remember where we’re going?” Pause for a long think. Then, brightly: “Are we going to Luton?”. Oh for a bit of that saintly patience which has eluded me all my life.

By the time you read this MLO and I will enjoying (or something) ten day holiday in Georgetown, Washington DC while our elder son (now he really IS saintly – not sure where he got if from) moves in to look after house, cat and supervise the repainting of our kitchen and dining room. I have misgivings but MLO has long wanted to revisit Georgetown. Carpe diem. Time is not on our side. I’ll report on how it all works out next time. Perhaps the rest (if that’s what it turns out to be) will help me to be a bit calmer and less cross.

This Friday (21 September) is World Alzheimer’s Day. September is, in fact, World Alzheimer’s Month with this one day as the focus. Driven in the UK by Alzheimer’s Society and other charities, the idea is that everyone – organisations and individuals around the world –  work together  to “raise awareness, highlight issues faced by people affected by dementia and demonstrate how we can overcome them to help people live well with dementia.” That last bit is a quote from Alzheimer’s Society website.

It is, of course, exactly what I aim to do with these blogs of which I have now written over sixty. Every week more and more people tell me that they find them enlightening and helpful. Sometimes I’m even told that I’ve “moved” someone which is humbling. And the feedback comes from complete strangers. The other day I was in John Lewis at Ashford, Kent applying for one of their rather good credit cards. Of course I was asked what I do for a living and after a bit I mentioned these blogs. “I bet that’s helping many other people” said the warm, tactful woman who was processing my application.

As a journalist I get sent information about “awareness” days of one sort or another all the time. There’s one almost every day of the year, arguably far too many to be effective. It’s different for Alzheimer’s though. Globally, dementia is one of the biggest challenges we face, with nearly 50 million people living with dementia worldwide and we are told all the time that there are 850,000 people in the UK with dementia, 650,000 of them with Alzheimer’s. I don’t think My Loved One ever planned or wanted to be a statistic but these things happen.

So if you get the chance this week to attend a fund raising event or to contribute to an Alzheimer’s charity then I urge you to do it. Or maybe you might think about a little monthly direct debit which is what I’ve done.  As the Alzheimer’s Society puts it;  “To tackle this global dementia challenge we need to work together, and to collaborate and share best practice with one another.” But, of course, like everything else it costs money.

I’ve been thinking about Christmas cards too. Sorry, yes I know it’s only September but I’m an organised sort. For many years I’ve bought and sent cards in aid of Kidney Care UK and the Donkey Sanctuary. The former was in memory of my father who died of kidney disease in 1997 and the latter because I like, really like, donkeys. This year, under the circumstances, I’ve decided it has to be something different and I’ve ordered cards from the Alzheimer’s Society which declares that 100% of their profits are spent on their work.  Every little helps, as a certain supermarket likes to remind us.

Meanwhile back on the home front I seem to find myself increasingly fielding semi-verbal non-sequiturs. “I can’t find the thing with the spout” MLO said recently. “Do you mean the teapot? If so it’s in the dishwasher. Why do you want it?” said I. “No [fumbling for words]  I meant a green thing.” I eventually ascertained that he was looking for the small watering can for the hanging baskets. If you live with Alzheimer’s you need to be psychic – especially when, as often happens – the question or comment and response bear no relation to each other.

You need to maintain a sense of humour too. A couple of weeks ago, we had a problem with the controls on heating, hot water, radiators etc. I emailed our younger son (the family pro plumber who’d set it all up), asked for advice and went off to the theatre for work. I hadn’t expected our heroic son to drive up from Brighton and be on the doorstep by 7.15 – but he’d forgotten the keys he has to our house, so he rang the bell.

Now, living with Alzheimer’s is, in many ways, like caring for a child again. I have “forbidden” MLO as forcefully as I can from opening the front door to anyone he doesn’t know when I’m not in the house. He’s supposed to peep through the porch door to see who it is. On this occasion, he partially remembered what he’d been told and  didn’t open either door. Result? A frustrated, but ultimately amused son, who had to phone me and then call his dad up on the landline to say he was outside. But, when I came out of the theatre there was a very welcome text telling me laconically: “Heating fixed”.

Yes, we need to keep raising awareness of, and funding research into, this hideous illness. Do what you can this week.