Fighting Ms Alzheimer’s with Food

I regard myself as a sensible person but, oh boy, have I been stupid. I’ve been interested in food for as long as I can remember. I cook. I read recipes. For a while in the 1980s I taught vegetarian cookery. I gobble books about eating and its effects. I know about nutrition and healthy eating. Yet, although I had vaguely noted that My Loved One is becoming seriously underweight (as he was in his teens and twenties) I hadn’t considered what I should be doing about it.  Now that I’ve confronted it, my former lack of awareness is almost unbelievable.

Some background: I have struggled with my weight all my adult life and have long adapted my eating habits to keep calories low but plates full. This is nothing to do with “going on a diet”. It’s a permanent way of living. Thus cooking with very little fat or oil, bulking out every meal with vegetables (we became vegetarian in 1978) and always buying low fat versions of anything where there’s an option – cheese being an obvious example along with ready-mades such as pesto, curry sauces, salad dressings and so on. It also meant not buying or making cakes or puddings except on special occasions.

Well of course I didn’t cook two versions. I simply made what I regarded as a healthy meal and served it for us both. When he was well,  I now realise,  he was so used to this routine that he thought nothing of it and often simply had an extra course such as cheese and biscuits.  He was fit, reasonably active and stayed the same weight for many years.

Then Ms Alzheimer’s arrived and his body began to disappear. All the medical professionals comment on it and express concern. They keep weighing him.

We have recently been visited twice at home by a very pleasant, congenial, practical speech therapist to whom we were referred because MLO has a persistent, worsening cough. Nasties, such as lung cancer, have been eliminated and the consensus now is that the cough – like his diminishing voice – relate to the weakening of his swallowing reflex which is an Alzheimer’s symptom. Anne, the speech therapist, wanted to observe MLO eating so that she could make practical suggestions which might ease the situation for him. Quite early in the conversation she observed that his clothes are very loose and asked about his weight.

The upshot is – not that she would have put it in these terms – is that I’ve been starving him for decades and now that he’s ill the effects are showing clearly.  He’s unlikely, at this stage, to put weight on because, towards the end of life, as Shakespeare observed, “shrunk shank” is natural but in order to keep him as strong as he can be for as long as possible we must try to stop him losing any more.

Cue for a big rethink. My fridge now looks like something in a student-shared house. I have two plastic pots of grated cheese labelled with our names – mine’s low fat and his is full. There’s hummus in two versions. I have a bottle of top quality walnut oil which I drizzle over his pasta or rice at table. I put what Enid Blyton would have called “lashings of butter” on his toast. I give him best dairy ice cream, formerly an occasional treat, almost daily. I buy him those little individual steam sponge puddings you can do in the microwave. I encourage him to drink more fruit juice.

Anne also suggested that I make him food which slips down very easily on account of the swallowing problem. So now it’s very soft sandwiches with cream cheese (full fat, naturally)  or gooey egg mayonnaise. And I dutifully cut the crusts off, feeling as though I’ve morphed into my pretentious maternal grandmother or an underling in the kitchen at Fortnum and Mason. It’s a pity he has never liked soup but the cut off crusts (I was brought up not to waste anything) work well as bread dippers for my daily low calorie lunchtime bowl. Biscuits are a “tough eat” too, I’m told, so I’ve been buying  moist fruit cake and malt loaf for him – and although I’ve barely made a cake since my hungry sons left home I’m resolved to go back to baking provided  I can resist the temptation to eat the results myself. I shall have to do as I always used to when the boys were small and make the sorts of cake I don’t much like.

It all feels very odd because it flies in the face of everything I’ve done for decades. And in a funny way it really isn’t all that healthy because he’s eating, for example, less fruit and fewer vegetables although he’s probably still consuming more than the average Brit. He’s certainly also having quite a lot of sugar, given his cake consumption,  but I suppose it’s a question of balance. At this point preventing further weight  loss matters more than fretting about the finer points of his diet. We have to deal with the present. There is, after all, precious little future to safeguard against.

I really ought – given the level of my engagement with food and healthy eating – to have worked all this out for myself and done something about it before now. I must be more blinkered than I thought. Too much else to think about too.

I suppose, at some point in the future, I shall be allowed to sleep for more than an hour or two. I yawn with excitement at the mere prospect  but I know it’s unlikely to be tonight, or tomorrow night or the night after.

What routinely happens is this. I put My Loved One to bed, having washed, dried, dressed and tucked him in exactly as you would a child. He goes straight to sleep and I go off to have my bath after I’ve tidied and locked up downstairs. Finally, I get into bed beside him – still peacefully sleeping – and read for a bit.

Then it starts. The moment I put the light out and snuggle down he’s awake and chatty. There’s a word for this well recognised phenomenon. It’s called “sundowning” and is, I gather, a classic Alzheimer’s symptom. What is, apparently, unusual in our case, is that the sometimes hours-long midnight monologues are more fluent than anything he ever says during the day. The man who now really struggles to work out and articulate, for instance, “Can you pass the pepper?” at lunch time or “I can’t find my glasses” when he’s just taken them off will, at 1.00am,  casually come out with the likes of “But that precludes the necessity” or “It depends on the strength of the application.”

Not that what he says makes any contextual sense at all. Typically it goes something like this: “There was a boy at Honour Oak Park Station. We must ask the others. I don’t want to see you chopped up in pieces. It’s an executive decision. I’m cold. We could share the fireplace. Have you signed the authorisation? There’s the other gentleman to remember. You’ve committed a criminal offence.” And I’ve taken all that from notes I’ve made next morning. It goes on and on, often for an hour or three, all delivered in a monotonous, mid-register whisper. It reminds me very much of a poorly dramatised version of Finnegan’s Wake without the Irish accent.

Sometimes I try to engage with it on the basis that if he gets a response he might find some peace and we can both go to sleep. “We can talk about that in the morning. Let’s go to sleep now” is a tack I often try. It doesn’t work although occasionally he gets quite shirty if I try to doze and ignore it. “Listen to me, woman” he said fiercely, the other night. It’s as if someone else – the toxic being I call Ms A, maybe – is inside his head borrowing his voice because in 50 years of married life he has never spoken to me in that tone. How appalled the real MLO – wherever he is now – would be if he were around to hear it.

When it’s particularly bad I give up, get up and leave him to it. If go to work in my office which is next to the bedroom I can hear him if he moves and at least I can do something constructive with the time. I’ve quite often, in recent weeks, penned a review or a feature at 2.00am.  It isn’t the healthiest way to live, though,

It’s hard to fathom where MLO’s poor muddled mind is and what  terrifying hell it must be to be locked in a world where you can’t tell the difference between dreams, fantasies and worries and prosaic reality. I wonder how many hundreds of times I’ve said: “Listen. Trust me. There’s no one else here and absolutely nothing to worry about. It’s just you and me in this bed in Catford and it’s 3 o’clock in the morning – time to go to sleep” He pauses for a few seconds says “Really?” in a brighter, reassured voice, takes a breath and relaunches Finnegan. I know how King Canute felt.

I’m trying to persuade the GP to prescribe some sort of sleeping pill which won’t conflict with the Alzheimer’s medication but I’m not getting anywhere much at the moment. I’ve pointed out that MLO is tired all day – although it’s hard to tell how much of that is Ms A doing her stuff and how much down to the restless nights. More to the point is that I’m doing the caring 24/7 more or less single-handedly, thereby saving the support services much work and cost, and if I’m to keep that up I need a night’s sleep occasionally.

Ironically, I used to be an insomniac. Now, I can fall asleep almost instantly – if I get the chance –  exactly as I used to be able to over 40 years ago when I had babies to breastfeed in the small hours. I’ve become an opportunist kipper to such an extent that I’m usually involuntarily asleep within five minutes of getting on any sort of public transport and I sometimes struggle for wakefulness in the theatre which is infuriating. I also now think twice – an informal risk assessment – about driving far if we’ve had a really rough night which can mean I have to cancel a work commitment.

That’s one of the most pernicious things about this bloody disease. It doesn’t just get the sufferer. Its knock-on effects reach further than most people, who don’t have to live with it, can begin to imagine.

OK “war” might be a bit of an exaggeration but My Loved One certainly looked like a bit-part actor in a field hospital scene by the time Ms Alzheimer’s and Royal Sussex A&E in Brighton had finished with him on Sunday.

It all started with the TV remote control. Blooming thing went AWOL on Saturday night. MLO’s incessant, obsessive, tiresome fiddling with, and moving or “hiding”, things, has got noticeably worse of late. I’m always reminding him to put things down or quietly replacing them where they should be. But I can’t supervise every waking minute, Ms A is very sly and things have an increasing habit of simply disappearing. I don’t actually watch a lot of TV but I reserve the right to do so when I want to. At present I can’t apart from on my iPad. And that’s jolly annoying. It had been a difficult couple of days anyway with a series of very bad, broken nights. The lost remote was the last straw. I sounded off forcibly at MLO (I know I shouldn’t but …) and on the family Whatsap group.

Early on Sunday morning my younger daughter-in-law – who must be one of the kindest, most tolerant and thoughtful women on the planet – rang. “Susan, I think you should come to Brighton today” she said. “You need a break. We’ll look after him while you go out for the afternoon – round the Brighton Open Houses, for example”. So I scampered round tidying up, phoned Ocado to change my delivery slot and grabbed MLO’s emergency rucksack – the grown up equivalent of a nappy bag. Then I bundled him into the car and headed for the M23, arriving at their house about noon.

The Brighton Open Houses were lovely. I had a good look at the arts and crafts in about six of them, bought a pretty bracelet and then had a quiet cup of tea and a read in the lovely café and blissful solitude at St Augustine’s Events Centre before heading back. It was really quite a therapeutic couple of hours. I felt almost calm. Back at base our son started to cook a vegetarian roast supper for us all. MLO kept picking up their remote and trying to tell me he’d found ours but we worked round that.

So far so good until, ten minutes before the meal (smelling good) would have been ready. MLO suddenly got up from sitting next to me on the sofa where we’d been looking at the Sunday papers. Usually now wobbly when he’s vertical, he lost his footing and slipped. He seemed to slide on a newspaper one of us had left on the floor and fell into the bay window where his head hit the radiator.  The sharp-ish edge of it sliced his ear lobe and almost severed it.  Cupping it in my hand in horror I yelled for the chef and of course the upshot was that within a few minutes, at about 6.00, we were heading for A&E, turning off the oven and leaving long-suffering Daughter-in-law to get GD4 (aged 4) to bed.

Inevitably it was a long, long evening. As always with the NHS we had a great deal of excellent, caring, competent service from individuals culminating in a very pleasant young Ear, Nose and Throat doctor named Sarah who put 10 stitches in Elkin’s Ear and made it whole again. The staff are brilliant.  It’s the system and modus operandi which could do with a shake-up.  We finally ate our re-heated nut roast at about midnight.

By then it was, obviously, too late to drive back to London. Bless them, they gave us their bed so MLO could use the en suite, and lent us PJs. Then our lovely son rustled up cooked breakfast in the morning for a treat. We finally got home at about midday on Monday, much to the relief of our very hungry cat.

So much for my having any sort of respite – I was much tireder at the end of all this than at the beginning. The whole experience has taught me a few things, though.

I’ve realised that I’m still underestimating MLO’s growing and complex disability – possibly because it changes every day, mostly for the worse. He needs watching and probably assisting when he gets in and out of a seated position.  QED. Most of the time I do it but I still forget sometimes. One of the things they tested at the hospital was blood pressure lying and standing and it seems his BP drops when he’s on his feet – hence the wobbliness. Susan, take note. And just forget all that much bandied about stuff which implies Alzheimer’s is mostly about memory loss. It’s a holistic disease with long and powerful tentacles.

I am also reminded of just how supportive our fabulous family are. That long wait at the hospital would have been much worse if our son hadn’t been with us. He could have dropped us off and come back for us but I don’t think the thought even crossed his mind. And his wife, whose evening and weekend was completely scuppered just takes it all equably without a word of complaint.  GD4, meanwhile, bought me some flowers – all her own idea, apparently – while they were in the supermarket just before we arrived. “Let’s get some flowers for Granny Susan”. Yes, I have a lot to be very grateful for.

I have bought a wheelchair. And if it’s a bit sad to be quite excited by it and what it promises, then OK: guilty as charged.

I borrowed one at Tate Britain last month so that I could push My Loved One round the Van Gogh in London exhibition and by golly it really improved the experience for both of us.  People politely parted so that we could see the paintings and captions properly. And I didn’t have to worry about MLO flagging, feeling dizzy and needing to sit down. He and Ms Alzheimer’s were securely contained in their temporary vehicle. Win win.

Then a couple of days later we met our younger son and his family at Chartwell where, again, with MLO safely installed in a National Trust wheelchair neither he nor we had to fret about steps, slopes and standing about.

It convinced me that we could make good use of one on a daily basis. MLO now walks mostly in a very slow, short-stepped trudge That, apparently, is a classic Parkinson’s symptom and therefore part of the “mixed dementias” our consultant now thinks he has. When he’s not trudging he loses control of his legs as if he were trying to run. And that’s terrifying as I try desperately to keep him upright while his feet paddle out of control, his body veers all over the path and I struggle to steer – most of the way along Upper Street, for example, when I (unwisely?) took him to see HMS Pinafore at King’s Head Theatre recently. It’s only a matter of time, if we continue thus, before he goes flat on his face and takes me with him. Then, if we’re both injured we really shall be in trouble.

Hence the wheelchair. I looked online but the options are as complicated as buying a car and it’s a learning curve (who knew that a “bariatric wheelchair” is one designed for a heavily obese user?) so I went to an excellent place in Penge where very helpful staff sold me a lightweight one which I can lift and which fits easily in the car –  for a hundred pounds less than anything I’d seem online.

It means we can explore the local parks and here in south London we’re blessed with lots of lovely ones. I can also push him to one of three local shopping centres if only to have a cup of tea and come home again. It’s very much what I used to do with babies and young children in prams and pushchairs – fresh air and a change of scenery even if it’s only a few ducks, a pretty flowerbed or half an hour in a coffee shop. It’s a relief too to be able to progress at my own speed rather than toiling along in frustration at about one mile an hour.

And, it will be much easier when I take him with me to, say, Chichester (twice this week) or Canterbury to get him from car to restaurant to theatre. And I might experiment with taking the wheelchair into central London by train if I can work out some step free routes, MLO spends too much time at home doing very little. If I can get him out a bit more on his new wheels then that’s got to be a good thing. Activities are supposed to help counter Ms A. And although he evinces very little enthusiasm for anything these days, MLO doesn’t seem to mind being pushed about.

And there’s another huge bonus. I used to do quite a lot of exercise – swimming, hooping, weights, mini trampolining etc – and until about 2016 MLO and I would do regular, middle distance walks of 5 to 6 miles. In the last couple of years it has all fallen away, thanks to Ms A. For a start I have to spend almost every waking moment doing my three jobs: carer, domestic, writer. Even if I do find myself with a rare, spare hour I feel obliged to devote it to MLO whom it’s increasingly difficult to leave “unsupervised” for more than a very short time. For a long time now my exercise routine has been reduced to gratefully striding between tube stations when I can and taking stairs rather than lifts and escalators.

Well, my weight is more or less OK at present but I’m jolly flabby. Not for much longer, I suspect. Pushing a wheelchair with an adult man onboard – even one who tips the scales at barely 9 stone – immediately finds muscles you didn’t know you had. Pushing it up a slope (plenty of those in our area) really works your thighs and calves and even proceeding on the flat makes you use your whole upper body and back. With every step I can feel my fitness improving and it’s extraordinary how much better that makes me feel.

I’m not banking on too many more summers but I reckon this one could be quite a lot better than it might have been.