Blunt honesty pays off

When My Loved One was finally given his devastating, condemnatory diagnosis 11 months ago, I had great difficulty holding on for the rest of the consultation. Kind and helpful though the doctor was, the dreadful words “My husband has Alzheimer’s” kept rattling round my head and my face wouldn’t behave itself. It was only my trusty old friend “Professional Mode” which kept me speaking articulately for a further 20 minutes or so although I’ve no idea what I said.

When we eventually got out of that room we staggered over the road, literally holding each other up, to a coffee shop where I let go. I cried and cried and cried – which probably didn’t help MLO very much. He, after all, had just been struck with a metaphorical sledgehammer and told that he must surrender his driving licence immediately. In that first hour I think he was in such shock that he didn’t really take in the whole truth and it was a case of his comforting me rather than the other way round.

Well, somehow we got numbly through the rest of that day. I had the presence of mind to inform close family:  our sons, my sister and my dearest friend, who’s effectively another sister. All four of them came back immediately with supportive warmth – which, as I’ve said before, is immeasurably sustaining.

Then the next day my habitual practicality began to surface and I found myself thinking: “OK. Ms Alzheimer’s is here to stay. Crying isn’t going to get rid of her so just how are we going to deal with this monster?” My automatic instinct, as a writer, was to get it into words. But of course you can’t write about someone else’s illness – even someone who’s been as close to you as MLO has to me for half a century – without his permission.

“How would you feel about me writing a piece – and then maybe following it up with subsequent pieces – about all this?” I asked him tentatively. He’s always been a pretty private person and I expected him to say no unequivocally. To my astonishment he said. “Ok, why not? You’ll do it very well and perhaps it will help other people. Can I read them as you post them?”

So that’s how these blogs began. Starting on 8 June last year and posting weekly since there are now 35 or so in the archive and a body of about 30,000 words and counting. Perhaps eventually there’ll be a book in this. I know my little offerings really have helped others because several people, in a similar position to us, have told me so and thanked me. The writing has also cemented friendships and, in some cases, created friendships out of former acquaintanceships. Moreover – for reasons I struggle to analyse but it’s a well documented phenomenon – it helps me to cope.  Writing it all down as it really is, is oddly cathartic. I suppose it gives me some sense of being in control. I can’t evict Ms Alzheimer’s but I can write.

There’s more to “going public” than blogging, of course. It’s a whole attitude of mind. Neither of us dissembles with anyone, ever. MLO has learned to say to people when he’s in difficulties:  “Can you help me please? I have Alzheimer’s and I can’t find my way back to where my wife is” (That actually happened last week at the Coliseum where we saw Iolanthe. I shouldn’t have let him go off to the loo alone in an unfamiliar building). Then, inevitably, once the words are said, people are wonderfully helpful.

“Please could my husband have that seat? He has Alzheimer’s and he’s shaky on his feet”, I say to people casually on the Tube. And I order for both of us in restaurants so that waiting staff can see what the problem is – he usually forgets what he’s decided to order by the time he has to say it aloud.

“Sorry, that’s how I am now” he will say to anyone we spend any time with when he loses his way in a sentence.” And he’s learned to be matter-of-fact about the things he can’t do anymore such as the paperwork relating to my business. “I used to be an administrator but now I can’t work out what I have to do” I’ve heard him say several times to people who don’t know him very well. And he’s got used to the oddness of meeting strangers who know quite a lot about him because they’ve read the blogs.

Denial really doesn’t help Ms A’s victim or anyone else. “I think we’ve made a really sensible decision to be open about my problems” MLO remarked the other day, apropos of nothing in particular, in a rare, bright and positive moment. “Once people know, and realise that it’s OK to talk about it, they can react honestly without having to pretend that they haven’t noticed how I am. It’s so much easier for everybody”.

Meanwhile, I’m amused to note, that for a man who’s always tended to introversion, he seems actually to enjoy being the centre of attention. “Have you written anything about me this week?” he’ll ask, childlike and hopeful. And of course when we’re out everyone we meet (and I know hundreds of people in the performing arts world) makes a point of asking him how he is and allowing him to answer with dignity. And that would have been much harder if we hadn’t been truthful.

Everyone in our (unenviable) position has to find his/her own way of dealing with it. We’ve come a long way in eleven months.

Last Saturday I pushed, shoved, forced My Loved One a million miles out of his comfort zone. “Sod you, Ms Alzheimer’s” I said to our horrible predatory visitor and took her victim to a singing day in Folkestone.

Some background: I have been almost continually involved in some form of amateur music making since I first warbled in the infants’ school choir at age 5. In contrast, MLO, although a lifelong music lover (mostly a “classical” chap), hasn’t been a participant since he confronted his hitherto suppressed atheistic misgivings and left the church choir at age 16. So it was 55 years since he last sang with others and, of course, he doesn’t read music.

The singing day in question is an annual Gilbert and Sullivan (and we both love G&S) event run by someone I know through the huge and informal Kent music making network. It’s the usual deal – rehearse during the day with local soloists, then sing it all to an audience in the evening. Using the Tower Theatre in Folkestone, it routinely raises several hundred pounds for charity.

I’d asked the organiser/Musical Director in advance to seat MLO next to someone “strong” in the basses. The upshot was that as soon as we arrived we were introduced to a delightful father and son – the older man is an organist and retired clergyman. They looked after MLO all day with heartwarming kindness, helping him to keep his place in the score and to stick the post-its I’d given him in useful places. The programme was Trial by Jury – which MLO knows well by ear – and extracts from Utopia Limited which he doesn’t but neither did anyone else so it didn’t matter. Most important of all, MLO had to chat to people he’d only just met and that is vital. Reclusiveness is just an open invitation to Ms A to do her worst because it creates a vacuum for her to move into. And his new friends gently involved him in conversation in such a way that MLO was able to acquit himself with dignity.

He was, however, excruciatingly nervous. At lunch time he told me that was going to opt out of the concert in the evening and sit in the audience. Then during the afternoon a little miracle happened. Suddenly MLO seemed to “get it” and was able to start singing a bit and enjoying himself. From my place in the altos, further along the same row I could actually see the change taking place. By 7pm he was looking lovely in his DJ and ready for off. “Lively” might be a bit of an exaggeration but there was definitely a sense that I had got nine tenths of my husband back – on temporary loan from Ms A, as it were.

The concert was fun. I haven’t sung Trial by Jury for ages and Utopia was quite an adventure. At the end MLO’s eyes were shining – yes, shining. He’d taken part in an event with others and had a good time. He talked about it animatedly for most of the drive home to London too. He was on a high and Ms A was definitely absent and I managed not to feel sad or angry for several hours.

That’s what music making does of course. Those of us who do it regularly and/or often know that the satisfaction of having done whatever it is, is a very heady drug. Taking MLO to this event was an experiment. I couldn’t, as it turned out, be more pleased with the result. He’s already looking forward to HMS Pinafore at Folkestone next March and I shall find other similar things for him (and me) between now and then. Apart from anything else, there’s a lot to be said, at this stage in proceedings for something we can enjoy together.

In his prime My Loved One used to run along the tops of beach breakwaters to show off to the kids and anyone else who was about. He was proud of his agility and balance and, to be honest, a bit boorish about it. Then came a ladder accident in 2002 which put him on crutches for months and now Ms Alzheimer’s has shoved in her nasty oar.

Today he has problems with walking down steps and stairs. Up isn’t quite so bad but the descent is tortuous. “I’m frightened of stairs because when I look down it’s as if they’re coming up to meet me” he says, explaining a not-much-discussed but, I suspect, quite common Alzheimer’s symptom.

Ms A has, apparently, wormed her dastardly way into the bit of his brain which manages balance – and scuppered it. I find this excruciatingly frustrating, for example, when I’m standing at the bottom of a flight of stairs on the tube waiting for him and the train behind me – which of course I would have hopped on had I been alone – pulls out of the station. It must be even more frustrating for MLO himself of course, and I do realise how selfish my plaints must  sometimes sound.

Eighteen months ago, as regular readers of these blogs will know, we moved out of our spacious, town centre Victorian villa in Sittingbourne and downsized into a 3 bedroom 1930s house in our native South London. Our old house had 52 steps from attic to basement and both MLO and I went up and down them easily all the time. I  thought  the new house which has a single flight of 14 stairs would be even easier, but actually, step-wise for MLO it isn’t.

It’s to do with the relative space inside the two houses. All those steps in our former home were quite shallow and the staircases were a bit wider. Our 14 “new steps” are a good bit steeper and there’s a tight turn (big metal hand grip on the bend for MLO now) at the top. In fact, our younger son aged 42 and as fit as a flea, managed to fall down the entire flight when, a few months ago, he tried to race down them in a hurry – fortunately sustaining only a couple of bruises. His three year old daughter still says solemnly whenever she sees us or our stairs “Daddy fell down your stairs” and I expect she’ll remember the drama of it for the rest of her life.

This potentially dangerous gradient means that MLO comes down our stairs very carefully hanging on tightly to the banister rail – a new one put in for both cosmetic and safety reasons last year. The speed isn’t even andante. It’s largo.  And it makes him look, alas, much older than his 72 years.

It’s the same when we’re out, I don’t think I’d noticed until recently just how many flights of steps you walk down to get onto the tube – or off many mainline stations. At Elephant and Castle, for example, there are two huge flights to get to ground level when you “alight” (to borrow a bit of transport-speak)  a Thameslink train and it’s so busy that it isn’t always easy to get to the side of the staircase so that you can hold the rail. MLO has got into the habit of waiting until the crush has dispersed if necessary because he really must have access to that rail. Then, for the Underground, you go down in a lift and then down lots more steps especially if you’re heading for the Bakerloo line. It takes MLO quite a while and I have to build in extra travelling time when he’s with me.

Until recently we were the sort of people who routinely walked down and up stairs from choice in hotels, big shops and so on because it’s healthier than the mechanical alternatives. And I still do. But if we’re out together it’s now quite a relief to put him safely on an escalator, or even in a lift, and know that he doesn’t have to do all that painful, step by step, one foot looking anxiously down as he does so.

Those breakwaters suddenly seem a very long time ago.

A young man needs a lover, a middle aged man a housekeeper and an old man a nurse. Sexist but true. Well to be fair I didn’t do much of the middle bit but because we reversed roles but I’m doing plenty of the latter now to make up for it.

Last week, chauffeur’s hat on my head, I had to take My Loved One to the dentist for a filling and to see the hygienist. I took him into the waiting room and handed him over – the staff are very understanding – and repaired to the café over the road with my pencil and the book I was reading to review. Work never stops.  When I returned to collect him I was informed that the hygienist wanted to see me because she didn’t think MLO had processed what she’d told him.

A flashback: When MLO was a young lad he came off his bike, smashed his front teeth and in those bad old days of primitive dentistry lost the lot. He has worn a denture ever since. Is there a worse turn-off than false teeth?  I am mildly phobic about them anyway.  I find them utterly revolting to see or even think about. When he and I first became … err .. intimate (and that was a jolly long time ago too) he promised me with ardent fervour that I would never need to see or have anything to do with the horrible denture.

And so it has proved. In half a century I have almost never seen MLO without the repulsive thing. Even when a nasty ladder accident and foot reconstruction surgery put him out of action for months in 2002, and I had to do a lot of things for him, he still looked after his own teeth – thank goodness.

Until now. What the hygienist wanted to tell me was that, presumably thanks to Ms A, he is not cleaning any of his teeth – real ones and false ones – properly. He’s heading, she says, for fungal infections and there are already signs of problems. So we have to adopt a new procedure. And I have to supervise it. Ugh! I promised a lot of things in my marriage vows and I’ve kept them scrupulously but I never agreed to be tooth monitor. In fact I’d have probably bolted from the altar had I had any inkling that denture management would ever be on my job list. Surely “in sickness and in health” carries a false teeth exemption?

Well, despite all that, you can’t accuse me of not being conscientious. I bought a couple of tubes of Steradent (art come to this?), read the instructions and found a plastic pot. I dissolved one of the pesky things to make the blue solution, gave it to MLO and said. “Go into the downstairs loo. Put your teeth in this pot and leave them for five minutes. Don’t come out until that time is up. Then rinse the pot, put your teeth in your mouth and carry on as normal.”

It’s meant to be a nightly routine and that was eight nights ago. Since then I’ve had him several times wandering round the house with the pot in his hand. Once I found it on the draining board. Another time he wanted to bring it into the bedroom with the teeth floating in it.  Five minutes seems an impossible concept. At other times he’ll say something vague about “turning water blue” and no, I don’t know what he means either.  He has also several times left the denture downstairs and come up, toothless, to ask me what to do next – horrid sight.

Left to himself he does nothing except brush as usual for about 15 seconds which, of course, is woefully inadequate.  He simply can’t carry out a simple instruction and procedure any more. “Let me write it all down so I know what to do” he said. So we did that but he hasn’t looked the paper since. We’ve spiralled a long way downhill in recent months – even further than I realised. Damn Ms Alzheimer’s and her intrusive awfulness.

I think I’ve been more stressed about his bloody teeth than about any other single thing since Alzheimer’s was diagnosed. It’s driving me potty and, a lifelong bruxism person, I’m probably grinding my own fragile teeth to stumps. I can’t wear my mouth guard all day, after all.  I cajole, explain, shout, fulminate, plead, cry and still he gets it wrong.

Normally I try to be kind and empathetic. Sometimes I even succeed. But false teeth (even typing those two words fills me with revulsion) are a step too far.