Island Blog – Truth is……

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…….

The good artist is a vehicle of truth, he formulates ideas which would otherwise remain vague, and focuses attention upon facts which can then no longer be ignored.

Island Blog – Minding the Gap

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.

Island Blog – Days like This

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. ‘

Island Blog – A New Song

Yesterday I saw my first Siskin. I watched it, trying very hard to stay still when what I wanted to do was leap for joy, for this little beautiful tiny creature heralds Spring. It also felt a bit weird, as I reflected on that happy moment, that I am welcoming Spring so soon after leaving Summer. Usually it’s a loooooong wait and a chilly dark one, but not for me this year. In fact, this last year, I have enjoyed two summers and both were warm and brilliantly coloured up. I can still hear the bird song from the most recent African summer chorus, as I note the change in the Robin song over here. It feels odd to have missed that moment too, that single morning when birdsong moves from wintry to springy. It’s quite a different tune and one I love to hear, long to hear through the cold darkling days. It happened without me, this time.

What also happened without me was Christmas, and, in particular, carols. I love sacred singing and can listen to it all day long. I love carols too, for they sing of new birth, of hope, of all the good things in life, the things that cost nothing at all and that feed a soul like no bargain deal from Toys ‘r’ us could ever do. And I missed them all. All I heard was a boogied up version of Jingle Bells, once, in a supermarket. Now that I am back, I am feasting my ears (and soul) on Karl Jenkins or Kings College Choir, just so I get my annual fix, Enya too, her album on Winter. Music is for me the food of life, after all. Music will lift my mood in just a few bars. Classical, old school (Mantovani, Nat King Cole, Sinatra) contemporary, blues, bop (or whatever it’s called) and sacred, depending on what mood needs lifting. I could be feeling very Poorlittleme until the music starts. In a matter of minutes Poorlittleme has left the building as I fall into the colours of each cadence, each phrase, the power of the base line, the eye-watering beauty of a violin in the right hands. I might ‘really’ hear a well written phrase sung by a velvet voice and think….yes, that’s it, that’s the truth, that’s just perfect.

Even when I do actually leave the building, for a walk or a visit to the shop, the music still plays in my head. I can’t seem to turn it off, nor do I want to. I can hear any tune I want, plus all the orchestration. I can lose myself in it whenever the world around me grows too loud and nobody would ever know why I am smiling. Learning to harness the power of such a gift, in other words the ability to live inside my head whilst appearing completely engaged with the outside of it, is something so very precious. I remember my mum saying that music was just noise to her. Not always, not when she was about to be sailed on to the dance floor by a handsome man, but just in ordinary times. She would rather have listened to the Archers. Me……I find voices just noise. Not always, not when a voice is saying something I want to hear, but just when ordinary babble and squawk insists itself into my ear.

Recognising something that is important to a life and taking action to develop that thing is a two-fold task. If music is of such great value to me, if it lifts my mood and fills my soul and my heart, then I have a duty of care towards it. I must work at making it a priority in my life, no matter what troubles rock and roll around me. If I let it fall away, I am the fool. This passion was wired into my particles at birth, perhaps inside the womb and it begs attention, my attention. Surely nobody could let something so important just fade because of the babble and squawk? Well, yes, actually, that bit is easy. We all do it. But at our peril. Because we are all different, and some more different than most, we often find it hard to make ourselves important enough to warrant mindful attention. We leap into whatever those around us love to do, or look like they love to do, and we do it too, trying very hard to love doing it, even if we hate it. We think that is giving as we were taught to give. We are, in truth, caught between black and white, when there are a thousand greys in between. And in that catch we put ourselves to one side. And what happened then is that we live our lives for others, exclusively.

So, I say, find your own passion and, then, develop it, somewhere among those glorious greys.

Island Blog – Halibuts

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.

Island Blog – Pilgrim

I am not a natural carer. That’s a sentence, a thing I hear in my head, have heard for years now. Somehow, there was always a question mark at the end of the statement, like it wasn’t quite finished. As I am a carer now, it seems almost rude to make such a pronouncement, even to myself. This morning it came to me again and this time I let it sit with me for a bit instead of tidying it away quickquick. It could be dangerous thinking, after all. This time I looked at the words and the question mark and waited for more. Then, I got it. I am a natural carer. But there’s a but.

The times I have felt the call to care have been many throughout my life and I have risen every time. A child in turmoil, a friend undecided about his or her next step, or someone in a right old mess with a head full of fear and resistance. I have always been right there, a calming voice, a peeler back of protective skins, a listener and a very well read woman who can offer up ideas for the choosing. Then I would walk a way beside this person, encouraging, supporting and watching them move on and on into the distance. In other words I wanted to help them up to the top of their mountain from which they could see the whole view of their lives. From up there, new courage could be garnered from the winds and the light, and the world, way down below, far in the quiet distance, would lose its hold on the fetters.

However, this caring work promises no such freedom for the one who is now firmly grounded and heavily chained. There is no climeable mountain. There is a huge range stretching from east to west, from north to south, enough to darken any size of sky. I am not able to suggest anything much beyond a small thankfulness for what is. There is no chance of permanent repair, of a new choice of direction, a shaking off of old feathers. It is as it is and it will never get better.

Understanding this must be a freedom, or so I tell myself. Instead of thinking ‘I am not a natural carer’, with ‘I am a natural carer’ being the right answer, 10 out of 10, well done………… I look at the greys. I still love to help someone elevate their thinking. I still want to walk beside a person in a quandary to the summit of their mountain, to see them breathe in the cold clean air, to watch the sky and to re-consider without the fear of worldly pressure. But this is different. This can feel pointless at times, even though there is nothing at all pointless about making sure another human being is safe and warm. It can drive me to screaming point, or to a glass of wine at the wrong time of day. It can have me overwhelmed with compassion, flooded by tears, scared, tired and as restless as a flea on a dog’s back – and frustrated beyond measure because I cannot fix this problem, this man, nor this situation, no matter how much I want to or what well-read-up skills I bring to bear.

We women hate being fixed. Men are fixers and there is much written on the bizarre design of both sexes. You would think that we would have sorted out that nutty problem by now, what with all the scientific brilliance we have at our disposal, but it still stands firm between us and is still the most discussed subject in couples counselling. However, we women can want to fix too. We want everything to be the way we want it to be, within whatever parameters over which we have autonomy. This place of autonomy, in a traditional marriage is usually the inside of the home, although you are a fortunate woman indeed to have enjoyed such a widespread rule. We can fix our children until they tell us to get lost. We can fix our man, to a degree, but what happens when it is no longer possible? How does that feel? When something horrible arrives, like dementia or other mental illnesses with no cure?

I think there has to be some freedom in my understanding of this morning. I am not a natural carer for a long term circumstance. Next question……So what do you plan to do with that understanding? I will search for ways to lift this man to the top of his mountain, to breathe the good clean air. Well, not lift him, per se, for he is heavy and frail and fell yesterday flat down on the stone floor, no strength in his arms to do anything but lie there. But there are other ways to lift. If he can accept his sentence with whatever amount of grace he can drum up, then I can find him a mountain top. He was never an inside man. He was out in the wild, with the winds tearing at his face and the sea spray leaving sparkles on his skin. He was restless, always striding out somewhere and now he sits all day in one of two chairs, traversing the space between, very slowly, with the help of a walking aid.

I could look at that and feel very low. And, at times, I absolutely do. I can also find the mountain top inside my own mind and remind myself that, although this job may not be of my choosing, there are powerful and life-changing lessons to be learned as I take each day as it comes. Yes, I will falter and fail, over and over again. Yes, I will be frustrated and snappy at times, but if this is the ultimate journey of understanding, then I will make this pilgrimage all the way to the shrine because I know for certain that I will be a better woman in the end.

And that is worth the walk.

Island Blog – Name Calling

A name. What does it mean to hear it spoken out, or to be called for? For some, it is a longing. Many rarely hear their own name formed in another’s mouth and delivered into the air between. Softly, kindly, in anger or loaded with blame, a calling for help or a reprimand, they might be happy just to hear their name at all. An upward inflection helps however. To be called is to be needed, wanted, valued. To never be called is to feel invisible, unimportant, not needed at all. Even if a person isn’t very fond of their own name, it is about the only thing of real value any of us can say we own, even if we do share it with others.

I never really got the hang of my own name. Even as a teenager, once I had the head power to wonder why on earth my parents chose it at all, it sounded odd to my ears and still does. I spent a large part of that angst ridden time planning to change it as soon as I learned how. I wanted an exciting name with an ethereal ring to it, something that others wowed at. Plain Judy just cut no mustard at all. Over time, I forgot all about my name changing plans as life got herself very busy around me, and I had to keep moving for fear of being trampled in the rush, or, worse, left behind.

I suspect I am very blest nowadays to hear my name called so often, even if it irritates me – the name calling, not my name, although it still doesn’t suit me. But, I am old enough, now, to ignore such frippery thinking. When I am needed I am called for, sometimes up to 50 times a day. I am the one to help put this on, or take that off, or fix this or collect and deliver that. I am the chosen one. When I have just settled down to work on my tapestry, or have sunk my butt into the big old armchair, or am just zipping through the kitchen for more wood, or to write down a post it note, or to add to the shopping list and I hear my name called, I feel a scream rising. Perhaps I had already fetched and delivered, assisted with the pulling on of a warm jumper, washed the porage bowls etc etc and thought, foolishly, that all was well, that we were done, for now. I would be wrong. When someone cannot do for himself what he considers important right now….well, there is only one recourse, don’t you think? Where is she? Oh, there she is…….

And everything is right now in dementia. However, I have thought long and hard about it, reminding myself that if this was me, stuck in a chair, mobility very challenged, no dexterity in my fingers, no lightness in my feet and a demising ability to think laterally, I would need help too. How patient would I be? How would I feel about not being able to jump out of bed, pull on clothes, tiptoe (there’s no more tiptoeing for him) downstairs, flip open my laptop, sign in, write, make tea, light the fire, sweep the floor, sync my music to the speakers and so on and on and on – all that I take for granted, in truth. How would I adjust my mind or would my mind adjust itself on my behalf?

I can’t answer any of that, because I cannot really know. All I can do is to respond with compassion. Well, that’s a big ask sometimes! So, here’s what I do (sometimes)………I hear my name called, twice, thrice. and I hear it but stay quiet, giving myself time to push down the scream. Can you hear me? he calls. No, I reply. It makes us both smile. At other times I run through the room at speed, obviously on a mission for wood or bird feeding or somesuch and desperate not to hear my name called. My name is called. This time I ‘can’t’ hear. Perhaps I am going deaf. Perhaps I am just so deep in thought, no sound can get in. When I do respond, I must bite back the tone of resignation, that ‘yes?’ that says Please stop Bothering Me. I don’t always manage it. Remember, I admonish myself, that he needs your help. Well, yes, he does, but he mustn’t lose what remains of his strength. There are some things he can still manage on his own, so there.

I told him, the other day, that I planned to change my name. After all, I have a long list of muchnicernames gathered over the years. Oh, he grinned, knowing my faddiness, what will it be?

Ah, I replied. I’m not telling you.