Island Blog – Grief, Music and Cooking

I miss him. It’s like I am forgetting the last ten years of caring and remembering the before times, the good times. I wake at 2 am, cold, and turn to borrow his warmth. It really shakes me at first until I remember where his body now lies, in the frozen ground. I feel the warmth of his hand in mine, that I Am Safe Now feeling. I never slept well, unlike him but he always woke enough to calm whatever storm was going on inside me. I miss him. I wish I had told him he was my everything but I did not. The way we changed, the children who came and whose needs became our modus operandi and our division bell, the way life upped and downed us, all stopped my mouth. Why didn’t I say it? I just don’t know. My deep need for independence was of such importance to me that I forgot to remember the basics. Ah, regrets! All I can do now is to talk to him as I move alone through my days. I am thankful for the rise of good memories even as they do not come without guilt and regret. This is grieving.

Downstairs I flip on the radio. The Living Years by Mike and the Mechanics. A tad cruel. I think back on Mike, Angie and their two sons in our big kitchen at Tapselteerie. We are sharing tea and cake and Mike is telling my kids, whose eyes are on stalks before this celebrity visitor, that he had never had a guitar lesson in his life, that he taught himself in his bedroom. It is just what they needed to hear. it doesn’t matter how you develop your passion, he says, just as long as you do develop it. Remember that. When I look at my five children now, as adults, passionate about their work and with barely a qualification between them, I know they took Mike’s words to heart.

I empty the fridge drawers of veg. Onion, garlic, butternut squash, sun-dried tomatoes, apple, ginger, lime, red pepper, leek and kalamata olives. Add honey, balsamic vinegar, tinned tomatoes, white wine, herbs and seasoning. It simmers now on the range and will last me days. I always cook for a platoon. Old habits die hard. I make a flavoured olive oil (extra virgin) mix and pour it into one of those sealable jars. I soak more sun-dried tomatoes for a little, chop them and add them to the oil mix, for later, for lunch perhaps, in a tortilla wrap, not that I have ever worked out how to fold those damn things effectively. I always need a shower after a tortilla wrap. The music plays on.

Poppy dog comes downstairs. She doesn’t mind that it is still night time for most people; she just works with my wakefulness and if I am up then it must be breakfast time. I boot her out into minus 2 degrees for a quick pee and prepare her food. Dried kibble topped with raw carrot slices and a few bits of chopped chicken to draw her in. Kibble, after all, is a bit dull on its own. I order a small extending lead for our daily walks for she is going deaf and no longer hears my callback should we meet another dog. Although she is all bark and no bite, or all fur coat and no nickers, it can alarm folk, the noise and the rush of her. I think of how it is these days without tourists and of how all that will change when they return to walk around Tapselteerie, to lose themselves inside her wild beauty. We islanders have enjoyed a year now of peaceful bliss even as we need visitors and their cash. One side of the coin and the other. It thinks me.

Ten years of caring and I am glad it is over. 49 years of marriage and I miss him. How tricky it is to find perspective in those two opposing thoughts. How fine it will be when I do. When he was declining, I became practical and cool. I stayed that way right up to his dying. Perhaps I became what was necessary and productive for the times but now, as I begin to soften, I have regrets. Can anyone hold balance when facing the appalling horrors of dementia? Perhaps not. One day I will write on this, but not yet. My inner writer tells me there are many miles to go yet. Many miles too, till morning.

Island Blog – And So It Was

This morning woke me at 4am. Actually, it wasn’t the morning that woke me. It was the Poppy dog. As she has been alternately well and not well over the last few weeks, I am super alert to her every move, even in the thick dark of the night. I turn over, snuggle down, hope she will settle. But she does not. She patters across the boards like a mini tap dancer with too many legs, jumps onto the chair, then to the bed, then onto me, all wagging tail and snuffles. We get up, she full of beans and quite impervious to the thick dark. I pull on an old fisherman’s jumper and go downstairs to let her out. I make coffee, light the fire, flick on the twinkly winky lights and pretend I don’t mind that it is a good four hours till I can see anything at all through my windows. Mine now. Not ours anymore, not that I ever said ‘Our Windows’ seeing as I was the only one who cleaned them. For that reason, they were always really mine, but I do remember how antsy himself would get on hearing the word ‘mine’ when he felt he shared whatever came after; windows, home, driveway, dogs, children. If I ever said ‘my son’ or ‘my daughter’ he would correct me and in a cold clear voice. I found that infuriating but with hindsight I wonder why it bothered me so very much. Perhaps I felt that so little inside our shared life was ever really mine and thus I would hold on to any opportunity for a verbal claim to some degree of ownership.

I decide to find his most recent iPad. He kept buying replacements for no particular reason, the same no particular reason that saw him buying new mobile phones, of which there are now six sitting in the darkness with Henry the Lonely Hoover. Nobody knew why he did this, but I do. Dementia creates her own world and he was a resident in that world. Reasoning from this world meant little to him, was brushed away, as I was. It must have felt, for him, like conversing with an alien. This man who was never easy talking about his inner doubts and fears, who demanded ownership of pretty much everything, was never going to realise that to keep me out and outer still would just feed the Lonely in us both. Although he did soften towards the end, the stage was already set and the playwright refused to change the script, so we mumbled on like draught horses, plodding and submissive. I couldn’t change what was happening to him and nor could I change what was happening to me even if I did make daily decisions to be cheerful and capable.

I read from his short-dash sentences, as he tried to write down his life, that I turned cold once the diagnosis came in. I knew that it was true but it saddens me greatly now, to read it because he never spoke of it at the time, beyond a push-away comment. And that was at the heart of the Lonely. I am open and a talker. He hid from anything that lay below the surface. They say that opposites attract and that was certainly true at first. But as life trots on, people change, need new and different things, things that need discussing, understanding and appreciating or there is just Lonely. However, resourceful as we humans are, we learned how to live well enough as long as we stayed on the surface. And we did, for decades. But my need for stimulating conversation burned through me and I would find it with other people and he knew that, wrote that, hated that.

However, a long shared life is not to be remembered for the loneliness, because this would not show the whole truth of things. From the outside we appeared strong together, and we were. We laughed at the same things, talked of nature and wildlife and children and home life. We were careful around each other, in the main, for nobody wants war, if you can call sustained silence ‘war’. Nobody ever won these wars. Somebody always proffered the hand of peace and took it all away in a nanosecond. We were very good at that, even if I did long for a conversation about why and how it came to be in the first place. We lived together for ages, and well, and always confused about each other. Perhaps this is marriage.

As dementia crept on like a silent cancer, he became softer, as did I. When the bare bones of it showed so clearly, there was only kindness left. To hope for conversation was the hope of a fool and I am no fool. To wish things had been different, another choice for a fool; to long for resolution, explanation, the chance to understand how a man can live a whole long life without ever seeing beyond himself, another fool’s errand. So we didn’t bother, I didn’t bother. And the last few months were so much easier, even if the old scream did sometime rise in me. I had a task and it was a big one, but I also gifted myself a purpose, to make the end game as pretty as I possibly could. I always said I am no carer and then Life laughed, God laughed. I told himself that if he ever got sick I was off. He said he knew that. I told him he was a menace when well, so heaven knows what he would be like sick. Then he told me that he would care for me whether I was sick or well and he would have, for he was rock solid, unbending, immovable when it came to looking after me. He just didn’t see the need to ask me how I wanted to be cared for, that’s all.

And so it was.

Island Blog – Looking through Windows

My impatience, during this ‘grieving’ thing, oft gets the better of me. Why am I not sorted yet? After all, I knew he was going to die earlier than he might have done because dementia grabbed him by the throat. Why do my emotions swing like an overly excited pendulum, from an inner darkness to the bright light of freedom and opportunity, not once a day, not twice, but non flaming stop?

‘Ah, you humans……..don’t you know that your time is not my Time? My Time is a very different creature, one unfettered by schedules and earthly dates. You expect things to fit in with your plans but this is not how life works’. And that is that, apparently. I know it has only been just over 3 months. I know that those who have gone before me will say it will take 12 to 18 months to re-locate myself, not least because the last time I knew myself was almost 50 years ago; that time when I could say “I’ without being sternly reminded that ‘I’ is now ‘We’ and that most of that ‘We’ was on his terms of employment. To be honest, the ‘I’ I was back then was a strange creature, lost in Wonderland, curious, yes, but scared of my own shadow, unlike Alice. Understandable, then, that the promise of safety and shelter beneath the ‘We’ umbrella drew me in and out of that sharp, cold teenage rain. But now I am required to find myself again.

I didn’t think I was lost, not really. Despite the rollercoaster of marriage, children and rules, I knew who I was. I was a wife and a mother. I was cook and cleaner, business gofer, facilitator of others’ dreams and goals, full of sparkle and energy and quite able (a lot of the time) to ignore any inner cries for escape. Now all those memories face me through each window. Hallo, they say, noses pressed to the glass. We are all still here, you know, Mrs, not Mrs anymore. I don’t want them peering in at all. I don’t want to look out upon them all tattered and gnarled and persistent, jigging with that glee that thinks me of bullies. I could close the curtains, t’is true, but that doesn’t mean they go away. I could ignore them but, well, ditto. Apparently I just have to let them have their day and to keep walking down this new path.

I remember, well, looking through windows and wishing I could fly south with the geese. I would even have accepted ‘north’ in the darkest of times, but I am a grounded woman and we tend not to be flyers, Mary Poppins notwithstanding. However, inside a mind, the opportunities are endless. I know now that the worst failures and the best adventures happen inside a mind. In there, all choices and decisions are made. Right argues with wrong, downs argue with ups and light dances with dark. It doesn’t really matter what physically happens inside a life if the inner windows are kept clean and clear. Demons, bullies, failures, regrets come to us all and it is up to each one of us as to how we empower or disempower them. On the side of Light, we have the same choices. Although nobody can sustain a positive outlook on everything and everyone all of the time, it is possible to develop a strong reserve of endorphins so that, when the demons dance and cackle through the windows of a mind, a person can just watch without attachment or engagement.

Especially if those windows are triple glazed.

Island Blog – Elephants, Clouds and Paper Smoke

This morning starts at 4am whilst the night sleeps on. In the time between dark and light, the darkling, I sip tea and watch the sea-loch. The air is flat, the sky the colour of paper smoke. Nothing moves, not yet. Then, a sudden arc of silver burst into the sky above the flat water and I know there’s an otter on the hunt somewhere in the filmy depths. The ripples ripple on. Then I see it, the hunter, its black head piercing the surface, only to disappear again into the deep down dark.

I feel dark, even though I know that once the light blossoms into morning, it will fill me up, the light, infusing my skin as hot water does a teabag. They say women are like teabags. You don’t know their strength until you drop them in hot water. It laughs me, even as I know it’s the truth. Today, like every other day, will be a round of mopping and cleaning, washing and caring. And yet, now there is a difference, now that I have admitted to myself and to my family that I am no longer able to care all by myself. I feel a teensy bit of relief, heavily clouded, heavy as a whole sky coming down on me. I used to believe clouds were light as air. Planes fly right through them, after all. But now I know they can weight as much as 800 elephants. That’s a lot of elephants and a very heavy cloud. How does it stay up for goodness sake? I have no answer for that, not being an expert on the matters of cloud.

Walking through the day with my inner judge on repeat. You are pathetic, weak, giving up, what makes you think it is okay to say I’m done? I always knew you would never see anything through. You have always run when the going got tough. You disgust me. And so on and on, ya-di-ya, the whole day long, and it is long, the day, second by slow second, minute by slow minute, hours and hours of it. I fill in gaps, sweep a floor, try to avoid eye contact with anyone, tell myself I have served well, thou good and faithful servant, but the judge’s voice is way louder and she barely pauses to draw breath. I change my frock combo to see if that helps. The outer me might just have some influence over the inner one. I change the position of the kitchen bin, wipe a table, turn up Radio 2, watch the sparrow hawk dive and miss.

I know that at such a crossroads, Lady Providence stands with her hand held towards me. I know I have done all I could. I know the decision is the right one. Dementia is cruel in all ways. It separates and divides. It eats the brain until any chance of a communication flow is cut. It takes a big strong, loving, able, powerful human being and second by slow second, shuts him or her down. The family can only stand and watch, help where possible, encourage all attempts at retaining independence, autonomy, humour. Then the time comes when it’s clear there is no way this beloved will return to his former glory. Ever.

The light is light now, the tea drunk, the morning shoving night over the horizon, blazing white and cloudy, like paper smoke. Roses pink the view, one sweet pea flower, the first, waggles in the breeze; daisies and those blue things I can’t name turn to face the sky, searching for sunlight. I don’t think they will see it this day but, loyal as they are, they will persist in their looking until they fold up for rest once more. Goldfinch spangle the fence, taking turns on the nijer feeder, bickering, flitting. Across the sea-loch a heron stands immobile, staring into the deep dark waters, patient, waiting, watching, beneath a cloud-heavy elephant sky, the colour of paper smoke.

Island Blog – From There to Here

Leaving 40 degrees and arriving back to zero in the belly of a couple of planes with the ambient temperature of an airport or two in between requires a person to be vestment canny. Well, I really don’t know what I was thinking as I packed for Africa but it appears I put little thought into my return. Today I am wearing most of my frocks over jeans with a vest at skin depth, a long sleeved tee over the said frocks and a jumper to complete my shapeless bulk. When I step outside, I add to that a puffa jacket and a scarf long enough to wind into a neck brace. A most fetching look.

I noticed, among my fellow passengers, as a foggy Glasgow appeared at the windows, that they had considered a vestment strategy. How had I not? This question has thought me a lot since I returned to zero. All I can guess is that I was in such a flapdoodle as I packed for the sunshine that my brain dealt only with the immediate. Then I realised that dealing with the immediate has become my default, for everything is immediate around dementia care and any unnecessaries are pushed into the shadowland. Although it is delightful, in many ways, to realise how much of life can be unnecessary when necessary, it behoves a girl to remember those things that still await her in the wings of her life. In Africa I went to a spa and had my nails done. This was a first for me as I usually just bite them off or clip them to the quick so as not to scratch anybody by mistake (or intentionally). I have enjoyed watching my French polish flash little white moons into my looking and this little indulgence will not revert to the shadowlands again. Although this indulgence may not be a regular thing, at least I know the pleasure of it. It isn’t just the nails and how they look. It is the time taken for myself, to sit and watch someone else caring for me. This is important, for all of us, not just me. Taking time to spend time with Me is not something many of us talk about without either getting embarrassed at the blank faces around us as we try to explain what we mean, or getting the giggles. Well, it does sound a bit ‘out there’ does it not? I think the key is not to bother explaining it at all to a world completely caught up in logic and the daily dash to Nowhere. Of course, not everyone is doing this dashing thing but most of us are if we are honest.

But the wisdoms keep coming. They go back to Rumi, to Ancient Greece, and further back, and we still don’t listen, because we have not learned how to live this way, the way of emotional intelligence, the way of good health, calm hearts and heads, peaceful sleep, gentle breathing and love of self, not matter what the demands of our lives. I don’t think it’s easy, far from it, but I do know we need to wake up to a different way of being. In a hysterically busy world we are but cogs in a million wheels, or that is how it seems. children, work, families, governments, religions, rules rules and more rules can overwhelm the very best of intentions. We can feel like tumbleweeds in a desert wind.

So how to change that feeling of being out of control of a life? I am no guru with a mouthful of answers but what I have learned in this decade of dementia care with all its associated ‘immediates’ is that I want to come out of this as intact as is possible. Too many of my compadres have fallen sick as a result of intense caring over a long period, wherein any time for self was intermittent and without a plan. Perhaps, like them, I thought it wouldn’t drag on for years but it does. Perhaps, like them, I thought I could wait for me, that I would be there at the other end, just as I was before. I don’t now. Now, I know better. This is a journey and there is no map, no destination I can stick a pin in. And it’s ok. In fact, I would not have learned the valuable lessons I have learned had dementia not come knocking. One of these lessons, the one I most value, is the importance of self love and how it never seemed important before. I don’t believe I am alone in this. With accusations of selfish up-yourself coming from older generations, schoolmarms and all the other ‘For Your Own Good’ ies, it would have cried anarchy and that meant trouble at any age. But I have learned to own the ‘selfish’ accusation and it fits me well. Let them think that, is what I said to myself and myself grinned wide.

There is no rule book for self love either. Only this. Stop and listen, as the world threatens to swallow you whole and the noise of it is deafening and the demands relentless, to what your heart whispers. Hear it and do as it guides you. Just once will do for now, because when it whispers again, you will hear it more clearly. Then go with it a second time, a third, a fourth and on and on until your heart is a match for both the outside world and the inside mind. I admit there is quite a lot of stopping required at first, until you get in step with You, but the rewards are endless. Eventually the outside of you fits the inside no matter what Life brings.

I arrive home tomorrow. Let’s see how clever I am at walking my talk when the old ways and I collide on a familiar doorstep. One thing I do believe in is all that stopping to listen to the inner whisper.

It just has to have made a difference.

The meaning of words

latte

 

Talking with a friend the other evening, we discussed the meaning of words, how we each see and hear a word differently according to our experience of using a word in context.  Both of us might have liked to take the conversation deeper, but as we were at a celebration, it was never going to happen.  Happy people, all saying hallo, moving around the room, laughing, joking, having fun, sharing words that require no inner Googling.

We are taught in all the good books to accept, that acceptance is half the battle, half of any battle within a relationship, whether in work, school, home or community.  To accept that we are different, not just on the outside, not just in the way we see colours or moods or situations, but deep inside and based on childhood learning, familial teaching, experiences and lifestyle.  How on this good earth can we ever expect that to work?  It presupposes that whatever subject arises between us is never going to land in a soft place, unless, of course, we can accept our differences and just enjoy the chat.  I have a friend who is colour blind.  He sees everything in shades of grey.  I can wax as lyrical as I like about the Autumn colours and he will just chuckle.  I imagine for a moment not being able to describe anything at all in terms of colour.  Well, I can’t imagine that, and yet, he, who has never seen red or green or anything in between is barely phased at all.

That particular example is pretty easy to accept, but there are many others, millions of others where we can potentially butt heads.  I want white walls and you hate white.  White reminds you of hospital waiting rooms.  I attempt to change your mind because white, for me, is cloud, ice cream, frost on winter branches, school socks, Persil.  But I cannot change your experience of white any more than you can change mine.  One of us has to accept.

Or, is that resignation?

My friend at the party did have a moment of two to think deeper whilst I yelled my return hallos into a very noisy room.  He has always been good at that, being a deep thinker and on his feet regardless of noise.  He first thought that resignation sounded like giving in, like a weakness, a washing of hands, but, then he found a different way to understand that word.  Resignation is pro-active, not necessarily reactive.  ‘I resign’ sounds powerful, autonomous, in control of self, of my own mind.  It’s also a very good way to hold onto dignity should I come to the realisation that I am about to be fired.

Back home, I know that I have consciously chosen both those words to explain how I am managing my role as carer.  I accept that I have been gifted a role in this new production.  It isn’t the lead role, nor the one I would have auditioned for, but it is the one assigned to me.  On a minute to minute basis I get to choose how well I play my part.  When I meet bad temper, does it cause me to react like for like?  Yes, sometimes, when I am tired or when I take my childhood understanding of those words, the way they fit together, the way they sound and let them hurt me.  To him, they mean nothing much.  He was just grumpy, that’s all, and once the words are out, five minutes later, he is cheery and chatty and asking me if I slept well.  I was seeing, at that vulnerable moment, colours he never painted. Those words, projected like a fireball, were aimed nowhere in particular and rooted in frustration and fear.  I get that when I am not tired or low or feeling sad.

Then, there is resignation.  I am resigned to the fact that I am here, right now, and for the long haul. Does this make me feel weak?  Am I giving in?

Absolutely not.  In choosing that word I take control, not of the situation, not of him, but of myself.  I resign myself to the fact that this will not get better, nor will it go away.  I resign myself to no end in sight, to more bad temper, more of everything.  And I learn, bit by bit, inch by inch, that if I watch the words carefully, seeing them in my colours and yet understanding that he may well only see in shades of grey, then I can accept that words are just words.  It’s in the interpretation of those words where lies their power.

If I sound like your mother when ticking you off about not picking up your socks, you will scoot straight back to childhood and respond accordingly. You will probably whine and then sulk.  I undoubtedly do sound like a mother, but it will be my own peeking through those words because she is the one who taught me the inflection and tone and colour of a ticking off.  I do it her way without a second’s thought, and, as all mothers around dropped socks sound much the same, I could easily sound like your own.  I try a different tone, a different choice of word assemblage floating towards you on a fluffy cloud, but the message still stands.  ‘Pick up your fricking socks will you!!!!’  And the response doesn’t change.  Nobody responds with a ‘Of course I will, I’m so sorry, it will never happen again’ (aka an adult response) do they?

So, if none of us have really ever grown up at all, then how do we manage to look and sound like adults right up to the point when words blast us back to the playground?  We may be suited up and sensible but if we don’t begin to understand that words mean different things to different people, and then to consciously work on our childhood bungees, learning how to release them, to become the adults we purport to be, then wars really will never end.

If dementia had not come knocking, I would never have travelled this journey of learning, of inner Googling.  It is humbling, oh yes indeed, uncomfortable, yes, angry making and very frustrating at times, but the lessons I am learning tell me that whatever circumstances any of us live in, we can always go deeper, become stronger, wiser, more aware, more compassionate, more ready for fun.

More likely to wear the Unicorn Hat.