It has been a busy week. Wood delivered, and requiring me on the business end of a barrow. With a punctured wheel. No matter, a friend suggested a new wheel, one without an inner tube, duly purchased. Nurses came in to take bloods (standard checkup), Marvellous May, the cleaner made a ‘lot of noise’ with the hoover, as if it was ever possible to make none at all, and we made a trip to the optician. Yesterday the guy came to set up a personal alarm for His Nibs and recommended that he shouldn’t push the red button if I am in the next room.

I love when there is nothing in the diary. There is something so peaceful about nothing in the diary, like I could willow-the-wisp in my scumfies and slippers for days on end. However, it doesn’t often happen that way. In between events there is space. The key is to be able to notice that space before the old brainbox gets busy filling a natural hole. It is surprisingly difficult to s t o p. To sit, to watch the clouds, and not to see that the floor needs sweeping, again. I practice it, this art, endeavouring to stop the white noise in my mind. However, I have now learned that trying to stop anything is a waste of energy. Resistance according to the Queen of the Borg, is futile and she is right, because in the resistance process the only thing that fronts the mind is the very one I want to resist.

For example…….I came home to a new wet room. I alone chose the colour scheme, online, and thousands of miles from here, although the word ‘scheme’ is hardly the truth of it. The walls, a swirly beach, called Moonlight on Sand and bearing truth to its name, are fine with me. The floor, called Beach Hut, (you would think all is well at this point) turns into a wide spread of pale lilac. Hideous at best. I am not a lilac girl at all. The floor and the walls and, in fact, the whole wet room is a very professional job. I have nothing but praise for the builder who, bless his big heart, met endless troubles during the work, including a leaking water tank in the loft. The floorboards are wonky chops and the plaster is flaking off the 184 year old stone walls and he had to deal with all of that and more. He is, simply, the best. But, I still have a rise of nausea whenever that expanse of lilac brilliantine’s my eyes thanks to the very bright overhead safety lighting for safety lighting.

What can I do? Well, I can spend a mint changing Beach Hut to something that co-ordinates with Moonlight on Sand. I can stop looking at the brightly lit lilac dance floor, keeping my eyes on the Moonlight. I can sigh and get over myself. Or, I can add a little something of my own, something that will make me smile whenever I encounter the clash. Not a resigned resistance, but something that rebels against the ‘scheme’ without compromising safetynessment. Something nobody can trip over or struggle to negotiate.

Graffiti. I love graffiti and always feel a little sad when I see council workers madly scrubbing it off bridges or tenement walls in the pouring rain in luminous jackets. Why take it off? It’s art and it’s prophesy after all and besides, neither the concrete bridge, nor the grey tenement walls had much going for them in the first place. However, my graffiti will not be aggressive, nor accusatory. Mine will be uplifting, like daffodils in early Spring, giving the reader, whose bottom will be on the high-rise toilet for safetyness, at the time, inspiration.

I grabbed a permanent marker, and I began.

Or, rather, what you choose to see. I know that two people can go on the same holiday together, be around each other for two weeks and return home with entirely different stories. One saw the late arrival of a dinner out. The other saw the over-stretched waiters doing their best. One remembered every rain drop, the other saw the flowers beginning to petal up. One slept for the whole plane journey, uncomfortably, whilst the other didn’t sleep at all (but wanted to) but made friends with a fractious child and his overwrought mother. It has aye been thus with folk.

This morning, I lifted down a candle mess. Two wee scented candles, tampon sized, had melted into a pancake. No…..it isn’t a pancake……look….there’s a face, two eyes and are those ears? And is the creature smiling? What a cheeky look on its face………I took a photo and sent it to my African son, who would have been well into his morning at my 0600. He came back immediately in response to my question – Who is This?

Shaun the sheep, he said, no question. And there began a ping pong of nonsense on WhatsApp, covering in seconds what it takes days to travel in real time. I remember we played these daft games for 3 months when we were together. Straight back to his childhood and my second. All my kids learned the nonsense attitude to life. It wouldn’t have mattered that this so called friend at school had turned like the worm and was making life difficult. In the time it took to draw breath, this child became a creature and this creature made us all laugh out loud. The voice, the quirks, the things we all observed about this child, or this teacher, or this whoever, were reconstructed in fun. I recommended that, every time that person in worm disguise made unkind comment or ridiculed, my child might bring into his or her mind the caricature, and to respond not at all. It was always enough. I employ this mental manoeuvre myself, even now. It isn’t unkind, but a sort of peaceful warrior attitude, one that makes a choice not to feed the beast. And it’s all about what you see.

We can find dragons in clouds and monsters in forests. A dropped egg becomes a country, a broken bowl a landscape. Look, there’s Winnie the Pooh, or is it Piglet? Winnie the Piglet, perhaps. Whatever life throws, we can always catch it. It might not look great, at first but just wait till we get the hands of our imaginations working. You’ll see……once one of us begins the game.

I recall a long delayed flight once, in an overheated airport, somewhere in Greece. We couldn’t leave as we had all gone through security. There were all of four seats already inhabited by four bottoms, not one of which was budging. We settled for the floor. It was easy for us, a young family, but not so easy for the hot oldies with disabled this and that to contend with. Everyone was tired and mostly everyone was either screaming for Mummy or muttering murder for the airline. One of my boys pulled out a soft toy and brought it to life. Another followed suit, then another and before long there was a full production in play. At first, nobody heard anything above the screaming and the muttering, but, gradually, eyes turned towards these children and smiles appeared on weary faces. Even the screamers shut up, intrigued by the floor show. Then out came the juggling balls. By the time the flight was called, everyone felt quite relaxed.

For one, the flight was delayed too long, it was overly hot, there were no seats and the drinks machine was out of order. For another, life changed.

Often hard to write. Now why is that? Well, in this culture of keeping private things private I am obviously a boundary breaker. Trouble is that if we all conform to the keeping private things private thingy, then nobody learns nothing. My dad would have had a conniption at that grammatical twist.

This journey (that word irritates me a lot) is one of watching and waiting. Of wishing and not wishing, of hopes dashed and of the longest moments/hours/days and nights. When I write, ‘hopes dashed’ I am walking into the fire. The slow road of dementia is nothing but cruel torture. This poor soul is falling apart and, what’s worse, he knows it, he feels it, he fears it. As do I, the nurse/keeper/watcher and both our lives are on hold. Which, by definition is something neither of us can control. I could say it is in the lap of the gods, but as I don’t believe in gods, I won’t be saying it. However, you know what I mean. If I admit that ‘hopes dashed’ means not what you might think, I will face judgment. I will enlarge on that.

This morning, my man was grey and very frail. He could barely walk, barely talk. I could see his face was a bit lopsided and the nurse in me stood to attention. This could be another stroke. I gave him water ( he is right on the water thing since his last stroke in Africa, brought on by dehydration) and some food, and settled him by the fire. He slept and woke and slept and woke and every single minute I am watching him, checking him, ready to take action. By noon I am knackered with all this watching and readiness planning. I hoped he would just sleep on, that he wouldn’t have to face the gods with laps, the long slow demise. I felt a frisson of guilt, but a frisson is nothing but mist, that quickly clears, as long as you keep the windows open.

Every time this will happen, there are children to contact. Every time there is a nurse to alert, a carer, a neighbour. What will I do with the wee dog if this cants into an eruption in the darkling night with the wind blowing and not a ferry in sight? What do I need to pack? Should I do it now? All of that, and more. This is the sentence, the jail of dementia, or any illness on the cusp (which could be the size of Africa or a sliver of moonlight) of chaos, with not a butterfly in sight. And, as we know, dementia and other mental illnesses can take their time, dandling all of us in their laps, playing time games and teasing, always teasing.

My man is better tonight. Still grey faced, still wonky chops in his walking, still frail, but it seems the ‘danger’ has passed. Was it only in my mind? Possibly. Was it just a lack of spinach for the Old Popeye? Perhaps. But what it changes for me is absolute. I say ‘absolute, when nothing outside of science is ever absolute, but I like the word, for now. Do I spend time with my best friend for a whole week away? Do I go to help my son move house? Do I, do I, do I?

Responses to those questions will be by the book, (yes, they will) Of course you need to go, to do, to be! What about your life? Well, what about my life? If anyone seriously imagines that a life is a singular occupation, then they are reading the wrong manuals. Life is a group thing, big or small, but still groupie. It’s what we humans need and crave and long for. So, it follows, then, that when one of the group is sentenced to the slowest of dyings, we all feel pain. We also feel fury and loneliness and the desire to punch a hole in the universe. We watch and we wait and sometimes, we just want the one who never asked for this, who provided and protected and made our whole life into a wonderful crazy, colourful, noisy adventure; who took us up mountains into wild seas, who taught stamina and strength and ‘don’t you bloody well ever give up’ ness, to sleep on. I know this is bare truth, but there is only one sort of truth.

In the words of Iris Murdoch, who went the same way and knew it…….

There was a gap. Gaps are perfectly acceptable in a woman’s life, as long as they don’t become IT. My gap, ie more than two days without writing was because I was busy with grandchildren, collecting and delivering them. As we drove the little roads from A to B we chatted about their lives. They live in the moment, these wee ones, although I did have a little glimpse of what is to come for one of them, when he said he wished something was different. Instead of being completely inside the day that surrounded him, he was looking ahead. It was a small concern I am happy to say, but he might be prone to worry, in the future. It was one of those moments of illumination for me, a snapshot of growing up, right there beside me in the car.

It thinks me of how lives change and alter as they develop, up to the point where we have to orchestrate the change and development all by ourselves. From letting the day go by, we have to sort and order it into shape. From short trousers to the right trousers and, what’s even worse, on a day to day basis. That is both the pants of a life and its freedom, and it comes without an invitation. It just arrives one morning accompanied by an uninformed confusion. I used to just ‘be’. Now I have to ‘do’.

How glorious might it be to just let the day go by, let the next one come and the last one go without having to scrabble for control, battle with regrets and write endless post it note plans for the one yet to come. I think that probably only happens in heaven. I don’t remember when that moment came for me, that discombobulation, that fear, that dread. I am certain, had I voiced my fear of what-was-to-come, my loving parent would have turned to me with experiential wisdom and loving reassurance. At least I imagine so. And that would have been the beginning of the rest of my life. No longer was I an add-on to theirs. Now I had to learn, not only to think for myself, but to face 70 odd years ahead unthinking a great deal of it. That long road of learning to stand up and to stand down; to make something happen and to make it not happen; to love, but not too much; to rise in grace and to fall from it now and again; to believe and to doubt; to go, to stay, to trust but not to be a fool, and then, to be a fool in the eyes of the world for the right reasons. There is no list of right reasons by the way, no map, no app for your phone, no chance you’ll find a book on it in your local library. Its a flipping journey is all, and you can’t arrive at enlightenment by running in the corridors because that’s not allowed either.

Well, hallo Life. Hallo Gaps. Farewell to scraped knees being the entire focus of my day, and hallo to a tsunami of inner doubts and fears. Hallo, too, to choice and to a freedom that scares the bejabers out me one minute and empowers me to dizzy heights, the next. No more can I spend the whole day inside a gap because that will have consequences. No more can someone else tell me what to do because someone else has popped their clogs. Now it is all up, and down, to me. I have had plenty of guidance from the clog poppers, and still do, from those I admire, and like whom I aspire to be, or, at the least, to become, eventually, once I’ve organised my head.

As a supposedly grown woman, and retired (!) I can decide my own decisions. But what if I don’t want to even as I do want to? When I was a child, I could just ‘be’ as long as I ‘be’ed’ in an appropriate manner, but now, being is something that does its very best to evade my grab. Doing, on the other hand, is easy. Doing is what we do, what I do with my body. Being, on the other hand, is all in my head. Are the two connected? Sometimes I wonder. If I am to live a full and balanced life, how come the power was given to me? Surely everyone knows I am the very last person who should be granted such power of attorney. I am not to be trusted. My head is ransacked, daily, by the wreckers of self-doubt and ditherment. And, daily, I need to armour up, to re-locate my sword and my shield for the skirmish ahead.

When I was a child, I thought like a child. Now I am an adult trying very hard to think like a child, a child who doesn’t mind the gaps at all.

Yesterday was not a happy day. Now that it’s today, I reflect. What was different, I cannot note down. In the life of a General Operations Manager, there were no specific demands, no extra calamities, no surprises, nothing to flapdoodle about. All was as calm as it ever is. The rain didn’t fall, the outside tap didn’t freeze, my car started and there was enough wood for warmth. So, I deduce, it must be me. I was different. I felt overly weary, of everything, my body slow, my mind fixated on self and all her runforthehills thoughts.

On days like this I speak to no-one, call nobody, write no messages. I hide. I withdraw my tentacles and curl into my shell, whilst still functioning as I should. My thoughts are not fluffed up and sparkly warkly, but, instead, as dark as the basalt rocks on the shore. I see no birds, hear no song. I am cold and I am sore. No smiles are smiled back at. My voice is empty of chiaroscuro. I just want it over. The day, I mean.

It is very tempting to beat myself black and blue over days like this. After all, haven’t I realised that it was I who had my nickers in a twist? Everything else just ticked on, like the kitchen clock, moving on the hours and minutes as per normal, hours and minutes that, as far as I could tell, slowed down deliberately to upset me. This morning, however, I wake a different woman and yet all is exactly the same as it was yesterday. I listened to Heather Small singing Proud and answered her question. Nothing, I said, as I served up macaroni cheese. Today I would reply that I got through it, made macaroni cheese, for goodness sake, and even served it up with peas and a napkin. I kept the house warm and tidied where necessary. I greeted the occupational therapist with the lovely green eyes and even offered her a hot beverage. I waved at a neighbour as she catapulted by on the end of a huge wolfhound. I fed the birds and worked more on my current tapestry. I did good. But what I am learning, is to accept days like this whilst inside them. When I cannot, or will not, remind myself of my huge list of blessings, it is not the end of the world, nor of me. It doesn’t mean I am reverting to the moaning Minnie I was at the start of this caring journey. How could I, considering all the learning I have learned, all the changes I have made inside me?

Living in the moment is super fun when the moment is shiny and bright. Not so easy when it is too dark to see and all a girl wants is to go back to bed. My belief is that daily work is very important, inner work I mean. So, on days when I could kick ‘inner work’ into the never-never, it’s okay. I want to be a lady on the inside – and what she encompasses is grace, kindness, dignity and compassion. Never mind the outside, that skinny shaven-headed scruff in jeans and a big jumper, because being a lady on the outside only means diddly squat. I have met a few of them in my time and they were completely see-through. But when I cannot manage much grace or dignity or even much compassionate kindness, I do not topple. I am just tapselteerie for a day. So, although it is tempting, I will not judge me. I will just let days like this pass by, and I will pick myself up, in kindness and step forth into the new.

Something I wrote whilst in Africa comes back to me in relevance.

‘What would a lady choose? That’s what interests me. I know I am born a woman, but a lady is grown over time. Or not. Some say a lady is polite, deferring to others, especially men. She doesn’t shout or swear or run amok, or jump fences in a frock. She is just a lady on the outside. I don’t want to be her.

But I do want dignity, calm, self-control. That’s what interests me. A lady on the inside. I’ll still jump fences in a frock, shout sometimes in a red blood rage, swear and curse and think on murder. And, I may defer, I may not, but if I do it won’t be because you are a man, but because you have earned my respect. ‘

It is two weeks this very day that I landed down in Glasgow. Only two weeks. Although Africa seems much further away than that, I am delighted to know it has only been two weeks, during which I have managed to find my footing once again. I have stumbled, and often, over the rocks of resistance and recoil but instead of feeling that I have failed to turn into a paragon of eternal virtue, I now know I haven’t given myself enough time to adjust. I can be kind to myself, patient with myself, encouraging and compassionate. Instead of failing in a ridiculous and impossible climb to Perfection, I am doing pretty damn well.

The space and the light, the warmth and the freedom, the sights and the smells of Africa are, well, still in Africa. Here, in my little island home, things are very different. Space is a smaller concept for a start. Warmth is man-made, smells are not fresh and exciting unless I kick start my thingy that burns bergamot or lemon grass. The layout of the day is one of many little tasks, all of which require me to be their master. In my list of ‘failures’, despite brave plans compiled at 40,000 feet I count Not Reading My Self-Help Book for an hour in the morning. I also add Not Writing Down My Gratitude List, and another, Not Eating Good Fresh Food. Ok, well none of those are tragedic and all can lose their ‘Not’.

On waking, when first in the land of light and heat, space, freedom, sights and smells, I discovered my unwelcome thoughts had travelled with me. It took at least three weeks to finally scoot them out the door. It is always my time for dishevelment and discombobulation, the moment of waking, and the dreads and the nonsensically assembled images of disaster come unbidden, come hard and fast, filling my brain and rising my heart rate well into the red. I found a way, however, to dispel them in a flash, a word, a silly word, but a word that worked for me. Halibuts. I know, there is no such word. You have one halibut, you have 2 halibut, you can even have 300 halibut, and there is no ‘s’ required for a plural. However, the word not only makes me smile, but it does the job. I would check my head after speaking out this word, amazed to find that instead of a horror movie, there was absolutely nothing in my mind but space. It was and is all about noticing my thoughts and taking action rather than allowing them power over me.

As time went on, I didn’t need Halibuts at all. I do here, however. It isn’t enough to re-programme a brain once. It is something I must attend to whenever I feel my skin crawl with fear and dread, but the practice means I have the right tools to hand just when I need them. Now I can say my thank yous from a clear mind, with a steadily beating heart and a smile on my lips. Halibuts indeed……..

In just two weeks I have achieved more than I thought I had. I know, and let this one be heard by all carers, that I needed that break away and that I left it too long. I thought I could do it all myself, should do it all myself, ought to love doing it all myself, but that is dangerous thinking. I get that I am fortunate enough to have a son and daughter-in-law who welcomed me with open arms and charged me nothing for 3 whole months. Not everyone has that good fortune. I also know that it took me all of that time to find new footing, better tools, clearer thinking, a change of heart. It took me that long to find hope and to begin a dream again. Although I have no idea of the point of either, they sure are good companions, and far more friendly than the ones I have let go, like friends who are no longer good for me.

Regular breaks are the key, however short they may be. For some it might be a trip to town, a visit to family, a day out at sea, but whatever it is the key is in the word Regular. I found it hard at first to allow myself two nights in an island hotel. I felt guilty and selfish, but that was empty tool box thinking. It doesn’t help that the one being cared for will often feed that guilt, look sad, become more needy and so on, but be warned this will happen at some point. It isn’t easy to say I’m Going Away without feeling guilty and selfish. After all, wouldn’t this person want to go away too? Well, yes, they probably would but by the time you have done all the planning, stacked the car with mobility scooters and walking aids, sorted the house, the dog, the bookings and the ferry tickets, you may well want to jump overboard.

In the life of a carer, there is no easy road. No map, no guidelines. Although there is, in my case, a load of wonderful outside help, it is the inside of it all that will consume unless I take excellent care of Me. I must learn to love myself, however weird that may sound, to love myself enough to know that, without me, this whole fortress would crumble. That does not mean I have to hold up the walls. It means I have a primary duty of care to my own health and well-being, and even if I don’t know how to achieve that at times of exasperation and overwhelmness, I can, at least, take each little step as it comes. I can select my tools. I can give myself time to read, to walk, to listen to music, to escape and to feel deliciously naughty about it. False Guilt, Duty, Judgement, Expectation…..

To you all I say one word. Halibuts.