ELEANOR MARX: The Jewess of Jews Walk (Susan Elkin reviews)

Last week we – My Loved One, Ms Alzheimer’s and I – went on holiday. I hired a cottage, a converted stable attached to a multi-use farm on the outskirts of Hexham, and drove 300 miles north to get us there.

I’m nervous about holidays these days not least because it’s pretty tricky to find something which will work for our present situation. In the fairly recent past we’ve driven round America, South Africa, Australia and Malaysia and loved it. We also like city breaks in Europe and beyond and rural retreats in the UK.  Neither of us likes groups or organised tours of any sort.

Now, suddenly, none of the things we’ve always enjoyed is quite right. I was prepared, however to try the UK self catering break once more because I’m trying to accede to any wish MLO expresses. Loss of interest in activities and hobbies is part of the disease and it’s an increasingly evident symptom so I was delighted when he said firmly that he’d like to revisit Cragside which has long been our favourite National Trust property.  Pity, then, that it’s in Northumberland, and we live in South London but I decided it was do-able and booked the accommodation near Hexham.

The journey up was a nightmare. Including a very welcome two hour break with a dear friend near Northallerton who provided lunch, respite and a bit of sanity, it took 11 hours – traffic hold up after hold up. Moreover, taking MLO anywhere is exactly like taking a rather tiresome child out. He needs frequent loo stops and lavatories in service stations are never situated for the convenience of customers. I reckon – and I’ve timed it – that by the time you leave the motorway, drive round a roundabout or two, get parked and traipse across the car park and through the building it’s a minimum of 20 minutes. I try not to get exasperated (and yes, since I bet you’re wondering, we do keep an emergency receptacle in the car) but I frequently fail. Fortunately the drive home a week later was free of hold-ups, much easier and quicker.

The accommodation – nicely done up with splendid views down the valley – was all on one level but because this is hilly Northumberland it was on a quasi-terrace with steps up to the door and the new MLO makes very heavy weather of steps. This is, I’ve learned, a recognised Alzheimer’s symptom called “visuospatial difficulty” on one website I consulted.  It meant I had to do all the loading of cases, boxes and so on in and out of the car (I used to have a bit of back trouble but it seems to have gone away –  a case of finding strength when you need it?) as well as leading him by the hand up and down the steps every time we went in or out.

The Cragside day was great. For a start, and I think this was my fifth visit, it was the first time either of us had been there in sunshine. We both gasped at the house and its contents in delight as usual and marvelled at the astonishing views down the slope from the windows. Then we tried to walk round the nearer grounds. The place lives up to its name and the descent to Debbon Burn, the river hundreds of feet below the house, is via rough steps formed of big flat boulders. MLO took one look and decided, wisely, that he could no longer manage those. In the end – well done, National Trust – we found a cindered path intended for wheel chairs (new, I think, since our last visit) which enabled us to get down the iron bridge across the burn. We also walked through the pinetum which has conifers as tall as the redwoods we’ve seen in the US – they grow from the burn-side almost to level with the top of the house above. Yes, it really is quite a place and MLO was smiling quite cheerfully for most of the time we were there.

Often though, on other days, he looked fed up and uninterested. And it’s quite impossible to get him to think about or discuss plans for what we might do. So I say things like: “I thought, tomorrow, if you’re agreeable, we might go south to the Bowes museum ?” or “I think we’ll go into Newcastle by train for the day. OK?” He always agrees because, like an obedient child, he wants to please me but I know jolly well his heart isn’t in it. So we do whatever I’ve decided which usually ends up as little more than quite a lot of slow trudging although occasionally something nice happens such as my spotting a pretty vase in a Corbridge craft shop and his saying (relatively)  brightly “I could get that for your birthday”. Said anniversaire isn’t for another six weeks but he’s clearly fretting about it already which means that the date has yet to fall off his brain’s hard drive. His bank card was produced and I have the vase.

Then there’s the tiredness. By early afternoon, whatever we do – and it isn’t often a lot more than having coffee, a stroll and eating lunch – he’s flagging. Back at base, my routine was to settle down in the late afternoon to do a couple of hours’ work. Try as I might I hadn’t succeeded in clearing the decks completely before the holiday and I had five features to write while we were away. In the times gone by MLO would have objected to that and grumbled at me. Now, I think he’s quite grateful because if I’m busy writing I’m not making any demands on him.  I’d work at the dining table on my tablet with keyboard while he settled on the sofa with The Times on the other side of the room. Within minutes he’d be fast asleep and Ms A would be leering at me gleefully over his shoulder.

It was a pleasant break and generally I’m glad we went although I was relieved to get him home safely because it’s feels like a lot responsibility to shoulder on my own.  He was pleased to be home too – and managed to redeem a bit of self esteem by unloading the car single handedly because it’s all on the flat and I can back right up to the front door.

So what next? Is there anything else MLO would especially like to do? He has mentioned Vienna and a concert in the Musikverein. He has also talked about going back to Washington DC and staying in Georgetown which we both liked. I’m not at all sure about either although I suppose I could book assistance at airports and on flights. Or we could just stay at home. But I worry that if he spends too much time there he will lose even more interest even faster. Decisions, decisions.

There is a common assumption that Alzheimer’s disease – and the dementia which characterises it – is mostly about loss of memory.

In Luke Adamson’s fine play One Last Waltz, the central character Alice eventually admits: “I need to see someone about my memory.”

Our consultant is attached to the “Lewisham Memory Service” as if they could serve us up some extra memory like a phone shop.  If only!  The “Dementia Department” would be a more accurate, if rather less tactful, title.

Everyone you speak to has some experience of Alzheimer’s and it’s nearly always memory loss they want to tell you about.

Yes of course My Loved One has memory problems. I have to tell him simple things such as it’s Tuesday and the cleaner will be here at 10.00am over and over again. He often struggles for words too, starting a sentence only to find the key word has gone AWOL before he gets to it. If we’re seeing people we haven’t seen for a while I have to rehearse names with him carefully in advance.

But memory loss is only a tiny part of what life with Ms Alzheimer’s actually means. Here, in no particular order, are ten other symptoms we’re dealing with daily.

1.MLO is shaky on his feet and tends to shuffle because it feels safer. He walks at about half my speed. This, of course, has the effect of making him look quite elderly and someone almost always leaps to his or her feet to allow him to sit down on trains and buses – an indicator of physical frailty clearly visible to strangers.

2.Keys are a problem. If he tries to let himself in and out of the house he can’t put the key in the slot and turn it. He also has problems with the window locks. The other day he noticed that I’d accidentally left a car window open and wanted to close it. I said “It’s an electronic window you’ll have to turn the engine on” but he couldn’t do that either – and this, bear in mind, is a man who was regularly driving his own car less than a year ago.

3.MLO tires very quickly and is often sleepy. If we go, for example, to a museum or exhibition he flags and needs to sit down for a break in less than an hour. And he nods off over his book after dinner almost every night – now, I know there are plenty of people who do this all their lives but in this case it’s new.

4.He feels the cold in a way he used not too. Like his father, who died in 2014, MLO now wears thick pullovers almost all the time, sports a thick coat and woolly hat to go out and we argue about the window in the bedroom which I want open and he doesn’t.

5.He is very insecure when going down stairs. At home he clings tightly to the banister rail and we have a grab rail at the turn of the staircase. When out, he is very slow, ponderous and careful – especially in busy railway stations where there tends to be loads of steps unnoticed by the rest of us who are untroubled by them.

6.Sense of direction has gone. If, for example, standing outside Victoria station I tell MLO we’re heading north for Buckingham Place towards St James’s Park, a route we’ve walked hundreds of times, I see a blank look because he has no idea what I’m talking about. It’s the same if I come in from somewhere and tell him where I’ve been. He used, until recently, to be able to meet me in pre-arranged places – unthinkable now.

7.Spatial awareness is dwindling fast too. That’s partly why he can’t put things away accurately in the kitchen cupboards – he can’t visualise the space inside. It’s also why he says with a shudder “I wouldn’t want to do that now” when, for example, I back into a tight parking space.

8.Food tastes have changed – as I described recently.  He now eats, with enjoyment,  lots of foods he used to dislike with passion.

9.MLO’s personality is different now. Thank goodness there is no aggression. Instead we’ve all (sons and I) noticed a new compliance. Most of the time this formerly stubborn, pretty feisty man simply does what we tell him to without argument or protest. And that makes us a bit sad.

10.He can’t do paper work. A professional administrator, he was wont to have every file orderly and up to date. For years, MLO did all the administration for my business Susan Elkin Ltd for example. He was extremely efficient. Today he is beaten by the simplest clerical task and we’ve had to take it almost all away from him – although he did manage to renew the National Trust membership recently. I try to delegate simple discrete tasks to him on the grounds that it’s important that he does what he can.

Memory loss? Yes. And the rest.

As you get older you need less sleep. Right? Well, I’m not at all sure that’s true, although, if you’ve suffered from decades of insomnia as I have then it’s what you tell yourself – to offset all those gloomy media stories unhelpfully informing you that lack of sleep is as harmful to health as smoking and junk food.

My Loved One didn’t sleep well for a long time either. I suspect we’re a pretty typical couple. You sleep like logs, often right round the clock. when you’re young and first together. Then the children arrive. And, after the initial awfulness of night feeds and sleep deprivation, you both eventually learn to sleep with one ear cocked as you get on with life. Somehow after that a few years of that, one’s relationship with sleep is never quite the same again.

Then Ms Alzheimer’s turns up. Unlike the much wanted children she is, of course, a totally uninvited and unwelcome arrival. Odd though that just as children, like Macbeth, murder sleep, Ms A seems to enhance it – or at least that is MLO’s current experience.

He is now sleeping better than he has done since his twenties. Like nearly all men his age he usually needs to pop out to the bathroom once or twice in the night but falls straight back into deep sleep – almost as if he was 23 again, the age he was when we married.

There is an issue though. His night vision is terrible and I think that’s probably yet another Alzheimer’s symptom because it’s a fairly recent development. I can slip out of our bedroom across the landing and into the bathroom without turning on any lights at all – there’s a street light in front of the house which beams in. No so MLO who seems to need floodlights. Similarly, if I’m awake in the night and decide to read for a while I can turn on my bedside light and he is impervious. His tolerance of light is very high.

Now I loathe light in the bedroom. It makes it even harder for me to nod off.  So, for quite a while now, we’ve had curtains with black-out linings – bought for our old house and altered for the one we moved to 18 months ago. For MLO, that has recently become totally unsatisfactory. Every night – sometimes more than once – he would grope round the bed, muttering, usually waking me up (if he hadn’t already done so) by cannoning into the corner and grabbing my feet to save himself. Sometimes he would simply turn on his bedside light and wake me up anyway.  Not good for bedroom compatibility. I thought about this for a few months before coming up with a solution – of sorts.

He now has a child’s nightlight on his side of the room which is just enough to enable him to make his way round the bed. As far as I’m concerned, though, that light is so hideously bright that I could almost read a book by it and certainly wouldn’t be able to rest properly.  So I wear a sleep mask – which makes me look like Isobel Barnett on What’s My Line? (now that dates me!) or a burglar in a child’s comic. But it works. I’m away in my personal darkness – often not even noticing when he opens the bedroom door and turns on the landing light. He, meanwhile, can walk to where he needs to go in the night safely and often without disturbing me at all. It took me a while to get used to it, though. I woke up at least twice at the beginning thinking “Oh blimey. I’ve gone blind – as if I don’t have enough problems!”

Living with Ms Alzheimer’s is like that. She bowls problems at you all the time. The skill is to find solutions and compromises so that you can more or less carry on as normal. It feels like outwitting an enemy in a minor skirmish. We both know we shall lose the war eventually but I, for one, shall go down fighting with very shred of initiative and ingenuity I can summon.

And do you know what? I’m beginning to sleep more evenly than I have for a while too – presumably because I know my “charge” is safely asleep and OK.