understood

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Island Blog – Ripples, Dementia and New Land

Two and a half years after ten as a dementia carer, the ripples continue, spreading out as if no land is there to stop them. Where is the land, the beginning, the stop point and also the start? Who knows when, after all those years of confusion, of accommodating the one with dementia, of twisting into knots in order to make things as okay as possible, landfall is an option? And, what land will be there? A strange new one, one that will require the carer to find her or himself? Yes a strange land because this carer is forever changed. Just untangling the knots will take years and then it is not so much a finding of who I was before, but more of building a new me, one I don’t know at all, not yet.

I have just listened to ‘Travellers to Unimaginable Lands’ by Dasha Kiper on Radio 4, a series on dementia and caring and so intelligently put together as to explain the dichotomies, confusion, anger, demands and lack of understanding as to affirm exactly what I and other carers go through. The one with dementia becomes more of what he or she always was. Correct. People ask ‘How is he, or she?’ until we, the carer, grow weary of answering whilst feeling even more lonely and isolated than before. Rarely, oh rarely, does anyone ask ‘How are you?’ Why is this? Because, I believe, there is far too much still unknown about dementia and the devastating and long term damage to the carer; because a long term sickness is something to be compartmentalised, understood and run away from. It is messy and uncomfortable and what we want to see is a bright, capable, carer who doesn’t complain or fall apart. We want to hear about the good moments, hold onto them and even, in our kindly ignorance, encourage the falling apart carer to focus on those times. We don’t want to know about the details, the nightly horrors, the extreme lack of sleep, the anger, frustration and fear. We cannot process it, we just cannot. Please, their eyes tell me, keep this light. I’m just here to bring honey, flowers, a card perhaps have a quick coffee but I must get back to my own life. And there you have it, there I had it, there all carers have it. And somehow we cannot let our feelings out for fear of seeming weak and failing. So, we don’t.

The series, however, investigates and illuminates the feelings a carer will feel. Sometimes, the longing for it to end, swiftly followed by a tsunami of guilt. Sometimes the desire to hurt, to punish, to argue and shout. Sometimes the wonderful warmth that appears as randomly as the accusations, of an old companionship, a shared long-term agreement on what music we like, what stories, what memories we share. A glimpse of what was, the longing for it to stay a while, fingers clutching as it recedes or snaps shut like teeth, gone, forgotten, denied. The ensuing sadness, the rise from a chair I only just sat down in, my smile eager, say more, say a bit more, yes we did do that, share that, enjoy that together, then a lonely wander into another room as he clamped on his headphones and goes back to Casualty, something he would have mocked when he was the man I knew.

I am thankful for this series because although it was tough in parts to re-live those long years, its existence means that carers, unpaid or paid, just might find the support they need. Dementia is cruel and endless, or so it seems. As the person with dementia moves into unimaginable lands, they don’t go in a linear way, one we can understand and process. There are no uniform stages, nothing we can expect nor prepare for. As the sufferer’s unreality settles as reality in a damaged brain, there is no conversational flow, no logic, nothing to grasp onto. A carer lives reactively and that is upsetting, confusing and exhausting. Nothing agreed ten minutes ago is a truth, because a new ‘truth’ may appear, changing everything. And so the carer must accept this or fall apart. There is no opportunity for discussion, no way to remind a damaged brain of what was agreed, a trip to the shop, a cafe, a doctor’s appointment, because in his mind, that decision is my delusion, something I made up and never communicated to him. You always were flighty, fey, in another world!, making things up. A derisive snort, a turn away, and I must accept this without recourse to my own frustration, without expelling a fruitless vomit that would only make a mess, one I would have to clear up. To disagree is to bring on a 8 part series of accusations, rejections, sulks and criticisms, and all carefully, or so it seems, targeting my most vulnerable inner weaknesses, and poking at them all. He doesn’t mean to hurt, I tell myself, whilst I try to calm the feelings of rejection and the sting of dismissal, whilst I recall he could often behave this way as a healthy man. And, as he lights up like a Christmas tree when someone he is fond of comes to chat with him, the loneliness is crippling.

So, I say, Hallelujah to this new understanding of how a carer feels. Hallelujah to the freedom that understanding and exposure brings. To shine a light on we who care or cared just might nurture us as we work through the chaos and the years, because it would mean we no longer need to pretend everything is marvellous when in truth our whole world is crumbling. It also might mean that we can find new land once the story comes to an end knowing we gave our very best, our falls from grace understandable, our sacrifice a gift, not only to the sufferer, but to ourselves. And, when we are no longer all at sea, we can swim with the ripples until a new land makes them stop. We can climb out, ragged and torn whilst knowing who we just might be able to become, curious, broken and beautifully lost. I got through it, I did, and, both despite and because of the memories, I am proud of that.

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Island Blog – Day Enough

Sometimes there are days when everything seems possible and then from nowhere and for no reason arrives one that seriously does not want to be with me at all. I could barely get it out of bed. I had to wheech off the duvet and sing loudly in its ear to get any reaction at all. It wasn’t me feeling this way, no indeed, for I was all bounce and twinkle as usual, but the day itself lay heavy and disinterested in itself even with the prospect of mashed avocado and poached eggs for candlelit breakfast. Needless to say, a sad mood inside a home is going to affect all within those walls and I gradually found myself feeling listless and lost. I didn’t want to sew, nor alter a frock, nor any of the other time-filling things I employ these widow days, like wood chopping or stacking, garage floor sweeping, bird feeding, hoovering the carpets or cleaning the windows. I can make even those mundane tasks into a party. T’is my gift. I can chat to my new electric blue stick hoover with headlights and a wonderful base note in the key of B. I find my melody to match her base and off we go like ballerinas, scooting round corners and sucking up the drift, minding the spiders of course. She knows not to go there and her headlights make it so much easier. I tell Henry, as I return Blu to her spot in the dark cupboard under the stairs, that had he headlights and were he to let go of control by holding back his power instead of showing off by lifting newly laid carpets from their nail tracks, and if he smelled as fresh as she does, he would have more exciting excursions around our home. Chopping wood is my stress release. I don’t imagine anyone’s head on the block but simply see the challenge of this big ass half tree before me as one I am more than able to accept and complete successfully. I have a wonderful axe, t’is true and she and I have had many adventures in our time together.

But thanks to the Grumpy Day, I feel I am blowing into the wind, fully expecting it to say “oops’ and to turn around. I whacked up the tunes, made coffee, told myself to lift, lift and lift but the lift was out of order and no amount of poking at the buttons shifted the damn thing. I was slumped and furious at my slumping. So weak, so not like me, so lazy, so ungrateful, so pathetic. Then I remembered something my African son posted on his (Y)our Happy Place Facebook page just yesterday. I don’t remember the exact words but the message was to allow rest and revival rather than dashing into this new year with impossible goals that often lead to failure and self-flagellation. Well, I hadn’t set any goals beyond getting beyond all the fallout from a decade of dementia care followed by death, a process everybody tells me, helpfully, that can take years. But it was the ‘allowing’ thingy that stopped me beating myself up. I have never been good at allowing myself to ‘fail’ my high standards for self even as I am the best and warmest mother hug for anyone else who believes it for themselves. How riddickerluss is that.

The thing I do know about such days when nothing feels easy and all you can see out there is rain and mizzle and dark, is that they are not my fault. These days just come and there is only one way to get to the end of them and that’s to make them warm and welcome, knowing they are random and that everything about their gloom and slump is their stuff, not yours. I watched a movie, sat by the fire, watched the neighbour’s beautiful cat pad around my bird feeders and allowed myself many allowings Although I do feel a bit overwhelmed with all the positive thixotrons that invade social media, posted and re-posted, thus allowing people to say nothing from their own mouths, I do get it. Covid has locked us down too long and that hiding away has conflounced our equilibrium, upset our balance and challenged what we always understood as the pattern of our lives. We are all wide-eyed children now, wondering, peeking out, unsure and we don’t really know what to say next. When I say something next and out loud my dog barks. That is how silent life is when one goes and the other stays behind.

But, I digress. This day is almost gone. Actually it has because I made it some good sandwiches and a flask of tea and waved it off a few moments ago. It was a sad old thing for sure but I did dry off its jacket and boots and we did chat and I did make it very clear it is never welcome but that I will never turn it away and that made it smile. Which made me smile. And that was enough.

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Island Blog – Bloomers, Sunlight, Lacklight, and Tatties

Walks for me are meditative and questioning. I cannot sit still for more than five minutes nor pay serious attention to the in and out of my breath without getting the giggles. My breath works just fine without me paying attention to it, as does my heart beat steadfastly on without me bothering it. In the wee small hours I felt about for my heartbeat once and all was silent. Well, I thought, that’s pretty cool. My heart isn’t beating and I’m still alive. I always knew I was different.

Back to meditative/questioning walks. As I wander I notice, stop, chat with or admire something I missed yesterday, or something that wasn’t even there yesterday such as a new bloomer peeking up through the grasses. I see the burst of emerald leaves on an alder or the delicate fingers of Lady Larch, HRH of the Woods, dancing in the warm breeze like the wings of bird flight. I watch blue sky through the branches, squares, diamonds, circles, striations, fingers and whole swathes above a treeless bit, an artistic dash of cloud splitting the sky and in a hurry, it seems, to get to somewhere else. I contemplate it all and then me and me have a conversation. Look, I say, this side of the tree is in full bloom and that one (I indicate the inside of the wood) is only just coming. Why is that? Well, this side has the full sunlight. That side is darkling buried, its allowance of sunlight controlled by A N Other, or maybe a few A N Others if the wood is densely wooden.

It thinks me. If a tree can be affected by the amount of light shed upon it, how much more a human? If I am to bloom, I need light. If I don’t get light, I don’t bloom. If I don’t get light for decades I am in danger of turning the colour of mole, even if I am naturally infused with positive attitude and born with a natural propensity for fun, beauty, joy, laughter and dancing. Eventually my need for light in the form of real love, kindness, to be cherished, complimented, accepted, understood, admired and listened to, will require fuel from A N Other. If the light I am receiving is in A N Other’s control, and if it flashed on and off at will, then I may begin to mole-up, or is it mole-down?

I think of those who have told me of such lacklight. In the workplace, in the home, in school, in neighbourhoods or in family relationships and I have done what we all do when we don’t stop and think. We encourage this person who is turning the colour of mole before our eyes to look on the bright side; to look at what they do have; to count their blessings, to go for long walks, cook, listen to music, sew something……. none of which helps one jot, because what this sad person needs is not advice, but light. And we can shine it upon them just by listening, understanding, caring and walking beside them. We cannot change their circumstances, but they can, and well they might once they start to feel like blooming again. We can be the fuel they need, the sunlight they crave, by doing absolutely nothing.

In the garden, in the woods there is fierce competition. It is no different amongst we humans. Everyone wants to grab as much light as possible, but there is room for us all even if some of us are late bloomers due to lack of light; late, that is, until someone saw us turning the colour of mole and moved their branches just enough that we could feel the warmth on our skin.

I decide it is time to put the tatties on to boil. It’s 4pm after all and Himself needs food early. Why do you need to put them on to boil? asks my other self. In order to feed a human. I reply, eyes rolling. Why do you need to feed a human? Because I am one. Ah……ok….better get the tatties on, then.