Fatigue, tiredness, weariness, bloody exhaustion – yes, it’s all part of Ms Alzheimer’s merry-go-round. And, with her usual lack of discrimination, she gets the whole household, not just her target victim.

My Loved One is perpetually, permanently, constantly tired. That is, I presume, a symptom of the mixed dementias which seem to be felling him alongside good (bad) old Alzheimer’s. The fatigue is supposed to be at least partly related to his low Vitamin B12 levels for which he has 12-weekly top-up injections but I can’t say I’ve noticed them making much difference. So we have to live with it.

The effort of getting up, dressing and eating breakfast usually tires him so much that he (usually accompanied by our delighted feline monster who adores sleepy, sedentary people) sits on the sofa to look at the newspaper but nods off within a few minutes. Sometimes he’s so tired he will wander upstairs and lie on the bed for a daytime snooze, especially in the afternoons. From choice if nothing else is happening he likes to head for bed by about 9pm. He’s also developing a habit of narcoleptic disappearance whatever he happens to be doing – I’ve seen his sleepy head almost drop into his dinner plate, for instance, and he rarely stays fully awake in a theatre or concert hall. The only place he doesn’t fall asleep is in the car. Perhaps that’s a comment on my driving.

The tiredness is also related to broken nights. MLO wakes up frequently needing to go to the bathroom. This was so for some years before the Alzheimer’s diagnosis actually,  but back then he used to manage it solo and quietly. Today it’s much more often – sometimes every 20 minutes or so in the early part of the night and he needs help to avoid – ahem – “accidents” so I’m in and out of bed all night too.

Yes, before you ask the obvious question (and I’m beyond delicacy) we’ve got all the protectors etc to deal with leakage. I loathe the implications of the word “nappy” but there it is.  MLO, however, is a sensitive grown up and if he feels a call of nature he, understandably, wants to heed it – in the bathroom. Dignity and all that. So there’s a lot of laborious lumbering out of bed with me propelling him from behind by the shoulders because he’s often forgotten where the bathroom actually is.

It’s odd too. This whole bathroom business brings out the worst in him. In general MLO is compliant and sweet natured (more so than in the past when he was well, for the record) and usually takes my bossy instructions about every aspect of life on the chin without making a fuss. He’s grateful, I suppose, at some level, that I tell him what’s going on and what he has to do because he often hasn’t got a clue. The only time he really snaps at me is when I say, perhaps, at 1.30am. “No, you don’t need to get out of bed. You really don’t. You went ten minutes ago. Trust me. You really did”. I never win. And out we trudge in tandem. Again.

So broken nights simply have to be contended with. And it means, obviously, that I’m nearly as tired as he is. It is months now since I got more than two hours’ sleep at a stretch (other than went on a music course for three blissful nights last month) and often I have to be content with much shorter serial mini-sleeps but I can’t rest during the day to compensate because I have work – domestic and professional – which has to be done and commitments in my diary. Onwards and upwards is what it has to be. You do, as every new parent knows, gradually adjust and adapt to sleeping in short bursts. You become an accomplished opportunist sleeper but that doesn’t mean you don’t feel tired. In fact it’s like permanent jet lag.

Even a healthy body like mine will try to claw back sleep deficit too. I rarely complete the 25 min train journey into central London without “losing myself” for example and I often find I can’t read more than a page or to of a book before I’m gone. It’s like a plug falling out.

There have, moreover, been a couple of occasions in recent months when I have sensibly, but very crossly, cancelled jobs involving  longish drives  because I have slept so little the previous night that  I’m terrified of nodding off at the wheel. That’s the tiresome Ms A compromising my work opportunities again. She really is pernicious.

It is often said that people with dementia become increasingly like babies. It’s a lousy analogy. There’s something wonderfully, powerfully, hopeful in a new baby so that, in the scheme of things, you don’t really mind that much how many times he or she demands attention in the night. You know it won’t be for ever. Infant and parent have a future to strive for.  It’s a completely different kettle of fish when, fuzzy with tiredness, you know that this is a reverse journey.

“Never put off ‘til tomorrow what you can do today” my grandmother used to say. Or, if she was feeling pithier: “Procrastination is the thief of time.” Well thanks for that, Grandma. Like you I’ve always been a doer, not given to hanging about and pretty good at time management. That’s how I could do an enjoyable but demanding full-time job, my share of home stuff (mostly cooking while My Loved One did the rest) and still have some to spend with friends and family as well as practising and playing the violin, choral singing and doing a lot of reading.

Not any more. Ms Bloody Alzheimer’s has sapped much of that away and I now seem to spend most of every day (and often the night as well) just skivvying from one mundane task to the next – sorry, I mean caring, mopping up, running errands, taking MLO to medical appointments and doing enough laundry every day for a family of twelve. It’s as if life as I knew it has simply gone – and gone at breathtaking speed too.

I try – I really try – not to sound bitter or self pitying but I feel obliged to tell it how it is. Typically I start the day around 7am, usually having been up to help My Loved One several times in the night if only to steer him out of some restless fantasy and back to bed. Then I tend to him in the shower, and assist with drying and dressing. It’s very hands on and takes a while. Nothing, but nothing happens quickly these days. Then I pull a few clothes on myself and belt downstairs to organise breakfast which eventually MLO will trudge down to eat. By the time I’ve tided the bathroom, kitchen and bedroom, sorted/pegged out etc the inevitable washing and a few other, usually unanticipated, chores, I’m lucky if I get to my desk by 10.00am and I might get a whole hour undisturbed. For years I reckoned to get my head down at 8.30am and forge on until 1.00pm.  How else did I produce over 50 books and thousands of articles? I used to be able to return  to work for several hours in the afternoon and/or get out to an evening review job perhaps via a face-to-face interview too. Those were the days. Sadly I failed to appreciate how perfectly the teamwork operated until it no longer did.

The truth is that I now struggle to find the time for two or three hours of Real Work a day and I find that intensely frustrating. I’ve never wanted to retire. Working is my thing and it’s what I want to do more than anything. I’m fortunate in having several very caring and patient editors who understand the problems and, even as things are, I don’t miss deadlines. But by golly I resent not even having the time to pitch for more work or develop new projects. I’m a creative hard worker and still  in my Jean Brodie-esque prime.

But now as the chilly, uncertain light of 2019 dawns I know that I have to accept I shall be able to do even less work this year. MLO’s health is heading southwards every day. Getting out to review, for example, is becoming problematic. Hiring a carer in to cover a couple of hours in the middle of the time I’m out of the house already seems to be too little. He often phones me (yes, he can still just about manage that on the landline) within minutes of the carer leaving. Usually he’s panicking about where I am having dreamed or imagined that I’m in some kind of serious danger – generally I’m in a theatre and can’t answer so that compounds the problem. I’ve lost count of the number of times this year I’ve seen a missed call and charged out in the interval to call him. And all this is despite my carefully writing down for him exactly where I’m going and why with all the times. Unfortunately Ms Alzheimer’s is busy destroying his sense of time and ability to tell it,  just as she is ruthlessly confiscating most of mine.

I am, therefore, now thinking very carefully before I agree to review a show and that inevitably means I shall get to fewer this year. In the past MLO would have come with me as my “plus one” to some review commitments but he now gets very tired and isn’t actually interested in much so I take him ever less often. He did come first to English National Ballet’s Nutcracker at the Coliseum and to Messiah at The Barbican just before Christmas and seemed to enjoy them but those evenings were a gargantuan effort for him as well as for me and I wonder how many more times that can/will happen.

I am far from wealthy but we have enough money to pay the bills and buy what we want without having to worry too much and, obviously, my continuing to work helps with that. But when it comes to time I am rapidly becoming very poor indeed. I read only 50 books last year, for example. In the past I’ve gobbled up twice as many. Some formal exercise would be good too but when am I supposed to fit it in? I shall simply have to continue charging up and down stairs at every opportunity, marching along railway platforms if a train’s late and doing lunges in the kitchen while I wait for the kettle to boil. And as for the Arriaga string quartet I’m trying to learn the first violin part of for a session later this month … practice in five minute stints on a good day and often nothing at all. I know my fellow quartet-ers will understand but that isn’t the point.

There’s a great deal written about almost every conceivable aspect of Alzheimer’s but nobody seems to talk about how time consuming it is and how it steals your life – carer’s as well as patient’s. I find it one of the worst aspects.

Well, Christmas Eve didn’t start too well. At 4.30am My Loved One was stumbling round the bedroom mumbling something about East Germany and the need to escape. I took him to the bathroom and then got him back to bed. By 7.00 am when I next surfaced, he was fully dressed with his bag over his shoulder, something I didn’t think he could still manage without help. “I have to get over the wall” he said earnestly. “No” I replied with what I hope was firm kindness. “You’ve been dreaming again. It’s just you and me here in Catford today along with the lifelong friend who’s spending Christmas with us and our nice cat. It’s Christmas Eve. Carols on the radio and all that.”

“Is she really?” said MLO showing a vestige of wakeful interest for the first time. “What’s she talking about?” Carole is my sister’s name. Oh dear,  oh dear.  It went on for a while. When I got him into the shower he asked me who owned the building and repeatedly if I was really sure that we didn’t need to get away urgently.

I still can’t get used to the man with whom I have shared my life, and until recently almost every thought, talking nonsense like Lear in the storm or Hamlet during his antic disposition.

Christmas Day, which started with buckets and mops in the bathroom well before dawn (I’ll spare you the grisly details), was marginally better. Once I’d got him up and dressed we spent most of the morning unwrapping presents – a task he now finds physically difficult –  with Resident Friend. Then she and I went for a brisk walk before I cooked a huge lunch and we spent much of the rest of the day eating it. MLO seemed a bit bemused but reasonably cheerful. He enjoyed the Call the Midwife Christmas special too.

Boxing Day was our main family day and I had to get the three of us to Cambridge. I wanted to start early to avoid the traffic and that worked well although when I dragged MLO into the shower at 6.30am he said, sounding exactly like our youngest, almost-four-year-old granddaughter. “But I don’t want to get up yet!” He’d forgotten, of course, where we were going.

It was a very jolly day with two sons, two daughters-in-law, two grandchildren and Resident Friend and we could all stay overnight (games with Ms Alzheimer’s in someone else’s bathroom – heigh ho) because our son had negotiated the use of his absent neighbour’s house.

The drink flowed and glowed, we ate a lot and wore daft hats. MLO sat impassive and often sleepy for most of the time while the rest of us played silly games etc around him and tried to jolly him along. It’s always a treat for me to have other people about because it means that for a few hours the responsibility is shared. And I think he still likes being with the family although small children are disruptive of his routines and I suspect he sometimes longs for the orderly peace of his own space at home. He finds conversation difficult too because he often struggles to reach his end-of-sentence target and awareness of that means that he often doesn’t bother to try. It’s easier to keep quiet. Everyone is patient and encouraging but it isn’t any sort of proper discourse.

It’s the presents season and he got lots. I shall remember 2018 as the Christmas of the Biscuit. Given his state of health, clearly no one could think of anything else to buy their father,  father-law, grandfather etc. There are now eleven packets/boxes in our cupboard. I shan’t need to buy another biscuit until Easter.

My parents died of physical illnesses – no dementia –  in their mid seventies, four years apart. Twice at Christmas, in 1997 and then again in 2001, I found myself looking first at my father and then my mother and thinking: “Twelve months is a very long time when you’re as ill as this. I really don’t think ‘we’ can go on like this for another whole year. Next Christmas? I doubt it somehow.” In both cases my intuition was spot on although I didn’t expect my father, who seemed in quite good (relatively) form on Christmas Day, to die on 30 December that year.

I won’t labour the point.

Our 3rd granddaughter, Rosie, with her Grandpa on Boxing Day