Each time the chance of a break comes along, I am both excited at its coming and full of the desire for it to go away, to not require my attention or my attendance. Living in this little bubble of mine, or ours, is comfortable and uncomfortable at the same time. I often yearn to pop it, to look out onto the larger world a-bustle with people and encounters, noise and hurry, music and conversation. Then, when the dateline is crossed, I feel like a little girl on her first day of school. What do I pack for this huge adventure, to a B and B about 8 miles away? When shall I leave? Could someone please take this cup away from me?
It puzzles me. So, I decide to think about said puzzlement, to bring it right here to my feet, where they stand, booted up and ready for another day inside the bubble. Where does my confidence go, I wonder? Why do I pack my jiggetty red boots and then see them, lying there among the clean jeans and the same old tee-shirts like a piece of a different jigsaw puzzle that will never fit? I take them out again. That’s better. All the pieces fit now. This is what I wear every single day after all. I know where each piece goes by heart. Eyes’ closed, I would know each one just by the feel of it. Red boots with Cuban heels have no place here. They go back into the dark of the cupboard and I can hear them sigh with disappointment. I’m disappointed too. What happened to my rebel streak? Is it gone for ever?
When I am somewhere else with my ordinary stuff, I pause for a moment in regret. I could easily have packed the jiggetty boots, the dress, the leggings, a bit of jewellery, a ring or two, for fun, just for fun. But I didn’t and now look at me…….I am here but they are not. They are back home in the dark, inside the bubble, and so, it seems, am I.
How secretly and silently my inner me, my confidence out there in the world trickles away like a dripping tap. I don’t even see, nor hear it leaving me. I just know it isn’t there when the chance of an escape shakes my hand and asks Shall We? In this life of caring, everything is simple enough in between the uprisings and skirmishes. Routine, essential for someone with dementia is easily maintained. I do the same things every day at more or less the same time in more or less the same order. I found an acceptable pattern, one that raises no surprises or sudden movements or elevated noise, and hold tightly to it. I’ve done so for many years now, Sometimes I erupt like Vesuvius but not so’s you’d notice. It happens inside.
I think so often of other carers, many of whom live on this very island, who have yet to find their way into the puzzle, to make the pieces fit. I remember my own struggle at the start of this and I ache for them. I am one of the lucky ones, knowing what I know, finding the confidence to accept that I need regular forays into the scary old world and trying madly to hold on to the jiggetty red boots part of me. I remember driving into the village, turning around and driving right back out again because I just couldn’t face anyone. I remember staying home, hiding, not answering calls, praying I would meet nobody on my dog walk in the wild. And, I also remember making myself go into the shop for broccoli or bin bags and finding a real live adult with a smile on his or her face, arms open for a hug and the chance of an interesting conversation, one that didn’t focus on the demise of dementia.
Nothing in life is too big to bear. That’s what I say. I have all the right bits of the jigsaw in my hands, even if the picture might change at any moment. Athough we carers are required to live inside a bubble, we can access a wealth of support. We can sustain friendships, ask for help with care, keep our eyes on the horizon, even if it is only an imagined one, at times. When I thought that I could do it all by myself, I created my own loneliness. I didn’t listen to those in the know who had seen all this before. I’m fine, I said. I’m tough, I said. I can do this without you, I said.
I don’t now. Now I see clearly that this caring role requires others and I must let them in. Accepting support is not admitting failure. It is bringing warmth to the cold, red jiggetty boots to the light, colour, music, laughter and fun into the home. This is not a life sentence, although it is, but instead the chance to share a load. The care support on this island is superb. It is kind, full of knowledge, experience, good humour and friendship. I am, as I said before, one of the lucky ones. I have heard some awful tales from other carers in other parts of the country who feel abandoned and very scared.
Dementia is like a storm brewing in the distance. It is one of the most common diseases and one that kills. Whole families fall apart because of it. But not mine. My family and my care support team are rock solid, strong, sad, supportive, solution-oriented and ablaze with humour. Together we find the spoonful of sugar. I wish it were the same for all carers, but I know that’s fairyland thinking. All I can say is look for help, for support, an do it asap, unlike me. It is out there just waiting for all of us. We are not islands. We need each other and, just for the record, the next time I step out of my bubble, I shall force my flat feet into those jiggetty red boots, because I think that’s where my confidence is hiding.