There are some wonderful words out there for the plucking and Cusp is one of them. In the dictionary it is explained thus;- ‘a pointed end where two curves meet, e.g. the horn of a crescent moon.’ Now that sounds like a fun place to be! I remember a picture of the man on the moon hanging by one buttock on just such a cusp. The image thinks me of many of us in many different situations, hanging there, not fully in one place, nor the other, but still, somehow, there at all.

Days seem to decide on themselves as they dawn. I have found that one day I am barely hanging on, and, the next, feeling like there is a whole moon beneath my tired old butt. I am high up there and looking down on a scurrying world. Today is such a day and I have no words to explain the difference. It doesn’t seem to be up to me, up to what I do or what I don’t do. It just is different. My thoughts are lighter, brighter and not because of me. No horrid nightmare played out whilst the dark surrounded me, only a sense of peace and acceptance, awakening refreshed and with a zoom in my heart. I no longer think ‘I can do this, or I can’t do this’. I don’t think at all. I just am.

Gentle music plays and the pangs of yesterday, the ‘what do I do with all these seedlings’ angst is now a shoulder shrug. There is time enough for seedlings yet. It’s still cold out there, and the garden will do what gardens do, whether or not I fret. In answer to the question ‘why do you have nightmares?’ I reply that caring is exhausting. He looks blank. How can he know what life is like for me, after all? He cannot know, and none of this is his fault. Yesterday I took myself back to the days of passion and laughter. I walked myself into memories that were the truth. I remember the thrill of seeing him framed in a doorway, the sound of his voice calling out my name. I remember longing to be with him, just us, away somewhere. I can still hear the sound of the land rover arriving in the yard and that huge sense of relief. All will be well, now, because of him, because he is back here, with me, with us.

I will not quibble with the way I feel today. I will not ferret about for explanations, nor will I make a plan to hold on to such a day, for it will escape me once more, as it always does. But, I will remember the moon and the cusp of a new one and the memories of what was, and be so very thankful that I have had what many never have.

And I will keep hanging on to the cusp.

I swing between the two every day. The scream inside is loud, but only to me. Outside of me the birds sing most singingly and the grass lies calmly flat (and in need of cutting). The sky is peaceful with blobs of cloud. There is no anger nor angst up there this morning, no sharp dashes of white against the blue. I check the new seedlings, having forgotten what on earth they are and they look back at me. We’re fine, they say, as they rise gently up from their boxed in royal mail squash of yesterday. All flop and drought they were then, but, after a goodly drink of rainwater from the barrel, they have relocated their perk.

I search for my own. Perk, that is. In spite of a recent two days away from the daily grind of caring, I am not as easily revived as my nameless seedlings. I, like them, feel the chill in the air, but unlike them, water is not enough. I book a week away in a remote cottage on a cliff. At first, once I have pressed play on such a commitment, I am euphoric. A whole week with just me, the sea, the sky and nature, books and watching and walking. No caring. Then, as my decision sinks its teeth into me, I feel the rise of guilt. How do I speak out this decision? I am greedy, yes, that’s what it is, restless, unable to complete my task without sprinting for the hills. How weak. How pathetic. What is WRONG with me? And, while we are at it, define ‘grind’.

I struggle to. The bright and breezy carers come in a few times a day. They sort what I no longer have to sort, to a degree. I have a weekly cleaner and someone to cut the grass. I am very privileged. But, what nobody knows, nobody, that is, who is not caring for a partner or parent full time, is what goes on inside a carer’s head, and that is where all the storms rage on. Guilt, frustration, sadness, panic, all wear running shoes with leaden soles. Living with someone who is slowly (very slowly) leaving the planet is a massive strain. We carers are taught by well-meaning advisors to learn how to inhabit the world of the one with dementia. We must practice until perfect the art of separating the person from the illness. All well and good, but nobody tells me how to sustain this tippytoe way of living for decades. As the cared for one declines, I must rack up my caring skills, even if I am exhausted, frustrated, sad and panicky; even if my fed is thoroughly up; even if I wake to another day of clearing up, sorting out and mending everything cracked or broken; even if I am exhausted and my brain, once sharp as a needle is now blunted into submission. I forget words, people’s names, where my car is parked and there is absolutely no end in sight.

So, of course I am justified in taking a week off in May, to myself, and another in June. That is as far as my courage has taken me so far. July can hang on a bit, but I know it is important, nay, critical, that I do meet up with July to discuss a mutual plan. Look after yourself, the well-meaners say, but without a word on how I do that. In Tapseteerie days I told myself I had to keep going. That’s what the world expected of me, ditto my husband, mother and mother in law. It’s what they all did after all, through wars and hungry days, crazy demands and no internet. Any show of weakness was, therefore, unacceptable, to me, to everyone. Besides, if I went down, then so did Tapselteerie. I reflect on what that staunch, well-booted up attitude cost me, and it was a lot. So.….duh….? Ah, but it is so easy to spout logic from a place of inexperience, returning, as the well-meaners do, to that safe place back home, where there is some sort of order and a week ahead to map out with confidence, a place miles away from the house of dementia.

To all of you who care in this way, or who ever have, I salute you. Actually, the very thought that you are out there at all makes my feet want to skip, not because I wish this on any living soul but because it means I am not alone. I can learn from you, the way you accept and smile and keep going. Perhaps this keeping going thing is what makes it all worthwhile, lifts the drudge and calms the storms?

Ok, I’ll buy it. Again.