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.