I’m a big fan of words, always have been. I love it when a new word turns up to delight me. Sometimes that word seems peculiarly apt, intended just for me. The word palimpsest is such a one. It describes a manuscript, some part of which has been erased and perhaps written over. It is very pleasing to wonder about whether this fine word was ever in common use; I like to imagine 19th century explorers running around comparing their latest palimpsests.

“Well, Arbuthnot, how do you like this palimpsest of mine, eh? You can just make out some erasures here at the edge of this section.”

“Oh, it’s all right, I suppose, Willoughby, but it’s a pretty poor example. This palimpsest of mine, here, has whole pages of erasure. See this one, it’s been written over, of course, but you can just see the markings below. Now that’s what I call a palimpsest.”

And so on.

The mind of a person with Alzheimer’s disease is a palimpsest. What was once written in memory and in cognition, in all those millions of little brain cells and synaptic connections, is wiped away. Faint remnants of the writing can still be made out from time to time. Keith asks the same questions over and over again because he forgets the answers within seconds of hearing them. Sometimes he vaguely remembers that I might have given him the answer already: the palimpsest reveals itself.

The trick is in how you regard that palimpsest: unearth it with explorer-like joy, noting that the document is in there after all, hidden but intact? I can’t really help being pleased when the even the faintest shred of short-term memory asserts itself. Keith does not feel that way, though. It makes him glum when he kind of remembers that he has forgotten something. He doesn’t want a palimpsest in his brain. He misses the original manuscript, and reminders of its existence are tough for him. It’s better when he does not reflect on what is lost. Don’t look back.

How often must we be told not to look back? The oldest stories give us due warning. Looking back didn’t do much good to Lot’s wife. Orpheus looked back, and see where it got him. So, there is a lesson here: when a shard of memory pierces the fog of Alzheimer’s disease, don’t look back. But the tentacles of “back” reach out of their own accord to enfold you. That imprint of our histories is always there, hidden maybe under the haze of Alzheimer’s disease, but still there. We cannot erase it completely. Faint traces will remain and reach out in their own good time. As long as the palimpsest inhabits us, we will follow Orpheus one day.


The School Motto

The headmaster called me into his office last night.

“I’ve heard from several sources that you have been pretty unpleasant to some people in your class lately,” he told me. “Take a seat.”

I sat down. Glared at him. No reason to stop being unpleasant at this stage, I thought.

“I hear you were a bit hard on your mother on the phone.”

“Well, you should have heard her. She said…”

The headmaster interrupted before I could even get started. “I’m not interested in what she said. Remind me, if you will, what is our school motto?”

“Be nice, be kind,” I chanted. “Why don’t you try it sometime?” I muttered under my breath.

“I heard that,” the Headmaster said. A short silence followed.

“So how nice and kind were you to Keith today?”

“Ha!” I snorted, pawing the ground with my hoof. “First of all, he wanted to call a friend, but he couldn’t tell the difference between the engagement diary and the address book. He couldn’t find the phone number in the engagement diary, der, and was scrabbling round in silence not asking for help. So, I had to stop what I was doing and help. Then he got the phone and couldn’t work out how to use it, so I made the call for him. I had to listen to his side of the conversation to guess the words he could not find and yell them out to him. When he finished, he couldn’t find the charger where it sat in plain view in the spot it had occupied for the last 25 years. Der. When I got him to see the charger, he couldn’t work out how the phone went into it. Aargh, it was like a bad movie.”

“Have you finished?”

“No, that wasn’t the worst of it. Later, when I went to change into my trakkie daks they weren’t there. I went through my wardrobe and Keith’s: still not there. I put on something else. When I came out of the bedroom, I asked Keith if he would do me a favour. Sure, he said. I said, goodo, the favour is never to touch any of my clothes under any circumstances, ever again, for the rest of your life. Seemed a reasonable ask. I eventually found my trakkie daks in the laundry basket. Weird, you know. Like, Keith never takes any of his own clothes from the bedroom to the laundry basket.”

“And how does this reflect the school motto, exactly?”

I refrained from telling him exactly where he might like to put his school motto. Instead I just gave him a look, you know, that one where the person on the other end of it just withers away into dust.

“You will need to reflect on this, ” he said, in that voice he uses when he doesn’t have a clue what to do.

So off I marched, back to the common room. Thankfully it was empty. I sat there for a while refusing to go to bed. Everything seems back to normal today.

Martin and Me

It seems I have something in common with Martin Luther King. It seems that we can both dream. That’s where any resemblance ends, though, because I don’t think my dreams are much like those of the Great Dreamer. Take this dream, for example, the one I had last night.

Keith and I were driving home in our van. It was an old-fashioned Ford truck, with a little caravan where its tray should be. I drove straight past our house (not this one, but another one entirely) and headed off around the block to get back to it. On the way, I noticed that the fuel gauge was pointing to the empty mark. As luck would have it, I saw a small petrol station on the next corner, and turned in. We had to wait in a queue that materialised the moment I decided to stop for petrol. Now, as you know, things don’t work the same way in dreams as they do in real life, so you must not be surprised to learn that while we waited in that queue, somehow Keith managed to put a large mattress and some sort of extendable metal cylinder, fully extended, on the roof of our van. The kids, who also now materialised in that magical dream manner, noticed just in time that the van could not now go under the barrier before the bowser. They climbed up and sorted it out. But now, again in the way of dreams, it turned out that Keith was driving, or at least had some degree of control over our vehicle, which slowly overshot the bowser and traversed the petrol station, coming to rest between two cars. I walked up to the driver’s door to hop in and take over the driving, but where the driver’s seat should have been, there was only a metal frame, with no seat, no cushioning: in fact, nowhere to sit except possibly on the floor, impossible for driving. Luckily, I woke up around then, before my dream-mind could invent some further ridiculous ways of stopping me from fuelling my vehicle and driving home.

Now before you run off to study psychology so you can interpret this dream, let me tell you that I think I know what it might be about. You see, this is not the first dream I have had where things seem to be going wrong. On this occasion, home has gone missing, I am out of fuel, Keith makes things harder, and the vehicle resists being driven. That all sounds horribly familiar. Aargh, my God! I have been swallowed by a bad dream.

Swallowed, eh? Note to self: check out Jonah’s story and see how he got out of it. And while I’m at it, check out Orpheus again. And I feel sure that Norse saga would have some excellent ideas. OK, ancient sagas and legends, OK you Old Testament, you, here I come. And let me tell you, you will present a solution.

Ancient history

There have been a few times when I’ve had my little craft all to myself, steering it through calm and choppy waters, carrying no passengers, no partners, no-one but little old me. That’s not to say I didn’t carry my share of baggage in the hold. Indeed, the baggage may have taken up most of the space. And there have been times when I shared my craft unwisely, and my passenger eventually had to jump ship, or be pushed off.

When Keith and I decided to sail together, there was no burden of leftover baggage down in the hold. The craft moved lightly and easily, weathering the rare storms with remarkable balance. Mostly our little boat just floated gently on clear waters.

The day we met, we talked about travelling to the Northern Territory together. A few months later, we took that trip. It would have been a honeymoon, had we been married.

Our six-week honeymoon was wonderful. I became spectacularly sick one night from eating bad barramundi in Darwin. We were staying in a backpacker hostel and I had to sprint about 50 metres down the corridor to the bathroom every time I was sick. In Kakadu, we broke a fanbelt and picnicked in the heat until we were rescued. We spent days in the glorious shadow of Uluru. We camped in the grand silence of Gosse Bluff, a huge meteor crater right in the centre of Australia. We were quite alone there, under a brilliant starscape. Then back to Uluru, where Keith had an impressive ulcer bleed, almost dying in front of my horrified eyes, and was carted off by the Flying Doctor to Alice Springs, to be saved. It was everything you could expect from a honeymoon, and more.

When we returned, we decided to move in together. We did not decide to get married. That seemed an unnecessary complication. We were either too modern or too lazy to bother with such details. But we both wanted to have a family. I said to Keith that I thought it would be good to get married if we did have children. He was non-committal. Then, as luck would have it, Connie began her nine-month journey into the world.

I said, “Well, we should get married then”.

Keith said, “But it makes no difference whether we’re married or not, so why bother”.

He can be a bit lazy, it’s true. I let it go, being a bit lazy myself, and noting that his argument made perfect sense. A few days later, he said, “I guess, if it makes no difference whether we’re married or not, we could just as well be married, if that’s what you want.” So off we went to the registry office with two friends. It was done. No fuss, nothing but the certificate and my new name.

And that is Keith, my husband: the man of perfect logic, and a sweet, giving nature. The perfect logic has taken a long walk off a short pier, just now. But the other half is still there: he is a lovely man.

Pass the Codral

I’ve been sick. The kind of sick where you retreat to bed and lie still because moving seems like a waste of energy, and maybe it will hurt. It was about five days before I was back on my feet.

While I curled up in bed, and later on the couch, my lovely children just took over, making and serving meals, looking after Keith and the household beautifully. It was fortuitous that I most needed help during the weekend, when they were free from other obligations.

Until you get sick, you don’t see that you are already on a knife edge, caring for your Alzheimer’s partner. It’s weird. It’s not as if I don’t already know that my life has been swamped by caring for Keith. I bang on about it all the time. It just seems like more, when you hand it over to some other schmuck.

These are the main things that I routinely do for Keith:

  • Food: shop, make and serve breakfast, morning tea, lunch and dinner; keep snack food visible on the benchtop when appropriate – put it away otherwise;
  • Drinks: keep tempting non-alcoholic drinks in the fridge; monitor and diminish alcohol intake;
  • Health: keep up to date with medications, administer pills; plan and accompany him to medical, dental, optometric appointments etc;
  • Hygiene: make sure he has a shower every day; make sure he cleans his teeth.
  • Safety: keep his tracker watch charged and get him to wear it; keep an eye on him generally to be aware if he has gone off for a walk; or is, for example, leaning a ladder on a high branch that he is chopping off, the ladder held up on the part that will fall when he finishes the job; look after him if he needs help during the night;
  • Activity: find activities that he enjoys and do them with him as often as possible; arrange outside activities for him and drive him there and back again; put on and turn off music and TV appropriately for him; manage friendships and relationships and outings; make sure he is safe and cared for if I am out, especially in the evening;
  • Wardrobe: select his daily wardrobe and nightwear; locate his dirty clothes in a variety of unexpected locations; launder them; put away the clean clothes quickly so he doesn’t swipe mine and turn up wearing them; notice when he is short of something and buy more for him, generally against his will; keep decent clothes out of his sight so he doesn’t ruin them all in the shed;
  • Cleaning: put away the clean plates, cutlery etc. smartly so they can be found in the correct place when I next need them; trawl through the cupboards to find the dirty plates he has rinsed, wash them and put them away; keep house, garden, pool and car in good working order. 

Until I got sick, I had convinced myself that the amount of free time available to me was commensurate with the level of Keith’s independence. Bollocks to that. My free time does not measure his independence; it measures the time needed to support him. We carers are blind, even if we are always on the alert.

Now that I’ve worked all this out, I think the best thing is not to get sick again. That’s my current plan, anyway.

Conversation Piece

I wonder, sometimes, what I talked about before I moved into the Alzheimer’s disease theme park I now call home. It disturbs me that everything I say seems to have Alzheimer’s disease as its key reference point. It makes me a predictable conversationalist. I feel a bit like Eeyore, or Neil from The Young Ones. It’s not so much that I’m bringing everyone around me down – they’re more resilient than that – but I’m constantly and predictably bringing myself down. And I guess I am a reminder of the downside, projecting an uncomfortable sense of the edge of the abyss.

What did I talk about before this happened? At university, I must have talked about the things I was reading and the ideas that were then new to me, and love and death and all the intense emotional experiences of youth. Then, when I was raising children, I must have been like every other parent, talking about child development, health scares, schools, the nature of learning and so on. Most of my friends and family were talking about the same things. Then, during my working life, I must have been going on about my work, my colleagues and bosses, my opportunities, successes and failures. I guess everyone around me was doing the same thing.

But I have now arrived at a fork in the road. My friends do not live in Alzheimer’s-world. Their conversation takes in holidays, movies, exhibitions, plays they have seen, concerts they have been to, activities they are planning. My conversation is always coming back to Keith’s well-being, my own state of mind, how the kids are coping, what residential care costs, and which places would suit Keith when the time comes. It’s as if we inhabit different planets. What is clear to me is that while I’d love to move to their planet, they would not much care to move to mine. And I must say, I entirely agree with their position. Their planet sounds like a lot more fun. And don’t you suggest for an instant that tragedy is more enriching than fun. I won’t have a bar of it. Experience tells me that fun is much better than tragedy.

It turns out that we have limited control over which planet we inhabit. The currents of your life just sweep you into whatever planet you belong to. You can always find more desirable planets somewhere, glimpsed in passing. And you can always identify a bunch of planets that you would not move to if given the choice: planets where your children have incurable sickness, or where you are homeless, or have lost all hope. I guess I will get to move planets again when the strong current of Alzheimer’s disease stops running. What will I talk about when Alzheimer’s world is ready to let me go?

Ah, you say, can’t you just let it be? Why on earth do you need to know what happens next? Stop looking about and just live where you are. Yeah well, I say.

Time for bed

There used to be just the one way of sleeping, round here. At the end of the evening, Keith and I would toddle off to the bedroom, get undressed and jump into bed, sliding between the top and bottom sheets. Worked a treat, too, back then.

Now, even sleeping seems complicated. For one thing, Keith lost his way with the sheets, frequently getting in above the top sheet. They tell me that visual perception changes with Alzheimer’s disease: things of the same colour are perceived as being the same thing. So now we sleep between high-contrast sheets. Top sheet is slate grey, and bottom sheet white, or vice versa. It’s not house and garden, but it does seem to work. They know their business, these experts.

But that’s not the only new approach to sleeping that’s happening round here. Let’s take the afternoon nap. I believe it is quite common amongst certain age groups. I personally am not in such an age group, and the last afternoon nap I took would have been forced on me at kindergarten, around 60 years ago. I can live with Keith’s afternoon naps. In fact, I quite like them. When Keith is napping, I don’t need to wonder what he is up to and whether he is happy and safe doing it. I just creep around quietly, not wanting this little moment of peace and quiet to come to a premature end.

I also understand that ours is not the only house in the world where sitting down on the couch after dinner is a cue for falling asleep. But there are ways and ways of doing this. You might lean gently back on the cushions and drift off. I consider that acceptable, having done it myself once or twice. In fact, I believe that is the correct method for after-dinner naps. But leaning forward over your knees, bent almost double at the waist, and falling asleep like that? No, no, no! I find it disturbing. When Keith does this (like, every night, aaargh!), I may suggest to him that he lean back, or go to bed. He does not much value my opinion on this matter. I think he likes our old habit of going to bed together. So I’ve adopted a little trick. As soon as he starts looking sleepy, I suggest that we go to bed. This is generally rather early, but he doesn’t know this, having no awareness of time. Off we toddle. In we get. Keith falls asleep within about 2 minutes. I then get up and go back to my TV program, or my book or my large glass of wine, or whatever, till I’m good and ready to go to bed. And no annoying hunched sleeper mumbling incomprehensibly to himself next to me on the couch. Bliss.

Some people would suggest we get hung up on “proper” ways to do things. Such people might well say there is no proper way to sleep; all ways being equal. From down here, in topsy-turvy world, I am confident in reporting that this view is complete nonsense. There’s a proper way to sleep, and Keith has forgotten it. As usual, it’s up to me to set him straight.

The bar is now open, thank heavens

When I was still in high school, rebelling away silently in my bedroom, I used to sing along self-righteously to the Rolling Stones’ “Mother’s Little Helper”, not realising how important a little help could be. I should have been singing along with the Beatles “A Little Help from my Friends (in the wine rack)”.

For many years, Keith I and I had been in the habit of having a wee dram at around 6 pm, and a glass of wine with dinner. We had, neither of us, been inclined to excessive drinking, just one or two pleasant drinks in the evening. Very civilised, we were. Now, not so much. Someone left the door open and the demon alcohol has started wandering around here at will. And while I would like him to be a bit more measured, I find I don’t want to banish him entirely. Mother does want a little help now and then.

When you have Alzheimer’s disease, the clock and the calendar become meaningless. Keith can tell daylight from night-time, but has no time for days of the week and hours of the day. He is not actually expressing himself or rebelling against the strictures of society when he pulls a beer from the fridge at 10:30 am, or even at 10:30 pm, as he leaves the couch and spots the fridge on his way to the bathroom before bed. Open-plan design has a lot to answer for.

Given the degree of his memory loss, he doesn’t remember when he has just had a drink, so he may get a new drink at any moment. In fact, he may do so when he has just poured himself a drink, put it down and forgotten about it. It’s like the pub round here, in that he takes a new glass every time, and I find empty, half empty or quite full glasses of beer or wine sitting around in unexpected places when I clear up.

None of the doctors we have seen during the lengthy course of Keith’s diagnosis and care has suggested alcohol as a beneficial treatment for Alzheimer’s disease. Some have gone as far as to mention that it is a brain toxin, best avoided. Easier said than done: Keith no longer has the cognitive capacity to decide to reduce his alcohol intake; and his wife does not have the determination to remove alcohol altogether from the house, because she likes it.

So I’ve had to become sneaky. Yes, of course it’s not nice to play tricks on your poor incapacitated husband. But you have to choose which nasty medicine to take, sometimes. I have been hiding the alcohol. Hiding things from Keith is not very hard: you just put them somewhere else. And it turns out that if you fill the fridge with soft drinks, he takes one of them as readily as a beer; if you put a low alcohol or no-alcohol wine where he looks for wine, he doesn’t notice that it isn’t the real thing. Me, I do notice. I have hidden my white wine in the vegetable crisper, and my red wine on the desk. You may find a bottle of whisky at the bottom of my wardrobe.

Ah, strange that alcohol that should have brought me so low.  You do start to wonder which one of us needs help.

All at sea

An anchor is a simple device: a big heavy grapple attached to a big heavy chain. When deployed, it holds your craft to the chain’s orbit.

We seem to think anchors are good: holding you safe above unmanageable, unseen currents and the unwelcome onslaughts of wind and wave, while tethers are bad: confining you so you cannot reach the green and delightful pastures there, just beyond your grasp.

I am held fast. I’m not sure whether I am tugging at my anchor or struggling against my tether. Do I want to let the winds and the currents set my direction, or do I just want the rope eased off a bit so I can get that little bit further away? Both options sound extremely tempting just now.

I’ve never been a wanderer, never needed the stimulus of travel to give meaning to my days. I’ve tended more towards letting my roots burrow deep into time and space than spreading them wide. So, till now I have been reasonably content with my tethers and anchors. I have been at ease, held in place here by family, home, friends, accustomed practice.

Maybe that’s why I’ve always felt an affinity for the line in Yeats’ poem “A Prayer for my Daughter”, that says:

O may she live like some green laurel

Rooted in one dear perpetual place.

Yep, that’s me. I used to read this line rather literally. My perpetual place was this one, right here, where I sit on the couch, looking out at my very own trees, lawn and wide patch of sky. But the “one perpetual place” is not an actual place, you great dope. It is your life, yourself, whatever makes up your laurel tree, your soul. My personal “dear perpetual place” turned out to be that easy-going life I shared with my chosen partner, Keith; that life where we gently drifted together to the currents of our family life, anchored to each other. We kept each other safe. We did not feel tethered, despite the pressures that come with work, kids, money and the various needs and obligations that fill a life.

We are still anchored together. His illness brings me a tether as well. Some days just now, the tether frustrates the hell out of me. Let me go! Set me free! I want to be alone! I’m suffocating! And so on into delicious self-indulgent melodrama. When I try to decide the very thing I want, that I am prevented from doing, I can’t actually pin it down. Do I really want to cross Siberia by train? Well, no. Or learn to tango? Maybe, but it’s hardly a big deal. Whatever I need, really, sits there in that laurel tree, in that dear perpetual place. It hasn’t changed. Look inside, keep looking. Have a cup of tea. Go for a drive. Walk on the beach. Buy an ice cream. Breathe the sunny air.

So that’s what we did on Sunday. Very enjoyable it was, too.

The Sounds of Silence

Keith and I are not speaking this morning, and I must say I’m delighted, though this is clearly a temporary thing. Unsurprisingly, my delight is tinged with regret; we are both upset. He has taken himself off for a walk, and I am stuck here uneasily wondering if and when he will return. [Darn it, he’s back now and we’re speaking again.]

It all started with the dressing gown. Keith has become a great man for pyjamas. After a lifetime of not wearing them, he has taken to them with gusto, and would wear them all day and night if he could. They are his favourite clothes. The problem is that they are not warm enough on cold mornings. I thought that since he had already become Pyjama Man, it was but the merest step to Dressing Gown Man-hood, so I bought him a lovely fluffy end-of-winter-sale dressing gown. He didn’t wear it for a few days. But last night he put it on (over jeans naturally, rather than pyjamas) and realised how lovely and cosy it was.

He napped in front of the telly, snug and warm in his fluffy cocoon, while I finished watching my program. Then we headed off to bed. Keith’s internal thermometer has broken so he doesn’t seem to register the experience of being too hot. And these days he hates changing his clothes, so he tends to go to bed wearing several layers of whatever clothes he has on at bedtime. To me, this is madness, but I don’t interfere. However, last night he was still wearing jeans at bedtime, so I did interfere. I suggested that jeans wouldn’t be comfortable to sleep in. He reluctantly took them off, looking daggers at me. I then offered the opinion that he should not wear the dressing gown to bed. That was a bridge too far. He was furious, telling me that he could wear what he liked to bed. I guess he’s right. Still, I hated to see the lovely fluffy dressing gown misused. Keith might be going to hell in a hand-basket, but I wasn’t having him take the dressing gown with him. Some people might think I have messed up my priorities. But I am living in topsy-turvy world, where everything is messed up. That’s my excuse, anyway. It was all too much. I huffed off and slept in the spare room. No dressing gown abuse in the spare room, thank heavens.

The wife of one of my carer companions hasn’t spoken for years. When I first heard this, I was aghast. It was not just the communication challenges that upset me, but the idea that a person could go on living for years in this state. How could you bear it? Then one day, in our carer group discussions, he said that at least her silence saved him from having to listen to the endless repeats and inane conversation that others of us endure. Ah, how true.

This morning, still cross with Keith, I was thinking, “How long can I bear this?” The answer came immediately.  I will be able to bear it for as long as it needs to be borne. There is no alternative.