When I first arrived here I was a mess. I hadn’t realized just how much of a mess, but now that I reflect on the changes in me over these past 3 months, I can see clearly. Caring is exhausting. Not physically, because I am not shy of work. In fact I need that work or I would become a fat old lump of a woman. I love to dance through my day, my work, my chores, taking great pleasure in unloading a ton of firewood, outside in the elements, of which there are many on the island. I like to challenge my muscles and to reassure myself that I can still bend and stretch, not as I did when younger, of course not, but still strong in back, belly, legs and arms. I refuse to make old lady noises as I rise from a chair, even if I do find that grunt in my mouth at times.
It is the mental side of caring that takes its toll. We carers pretend to the world that we are fine-thank-you all the time, hiding the truth from everyone, including ourselves. But it doesn’t alter the fact that it is a very real part of our job. In order to manage, we keep going, as cheerfully as we can. We have to. Caring for someone in decline however has many sides to it. To know, every day, that we must present a cheery can-do attitude towards the one we care for is sometimes a big ask. What was, is no more. Two-way, in depth, conversations about the meaning of life will not arise again. There will be no more travel together and the biggest adventures will be a tootle to the local town, loaded up with walkers and wheelchairs and other caring aids. Driving needs to be slow and careful around every bend in order not to upset anyone. Parking is a blue card thing. Timing needs to be intelligently managed. We plan to leave at 10. At 9.30, a 30 minute warning. Again at 9.45 and so on. Any shopping requests must be aided and abetted and everything moves so very slowly. Anything heavy has to be lifted in and lifted back out again when home. There are no more dates or dances or folk over for dinner. These are either impossible or just upsetting and disorientating.
Grieving loss goes on. It’s a going on thing. Parking hopes and dreams doesn’t happen overnight, well, not for me, anyway. However, eventually, these things I may have hoped for, or even planned, do, thankfully, park themselves at the back of my mind. If the primary focus is on caring to the very best of my ability, which it most definitely is, then life is kindly and I thank life for that blessing. However, the not knowing of dementia is the hardest part. Learning to live in the moment, in the day, occupying the whole space of it as if it was all I had, is something I have had to research and then study well. Everything could change in a heartbeat – literally. But I am not dwelling on that, not giving it leg room under my table. Finding, or re-finding, joy can take a while and my ‘while’ has come to me out here, in Africa. I had left it too long to take myself away and into a place of healing. It was my mistake, leaving it too long, because it could have been possible long ago. My problem was me. I thought I had to be there, in charge of the one I care for, smoothing everything flat and safe. I was wrong. He is doing just fine without me there. He has carers a four times a day who know just what he needs. He looks forward to their visits. Our children come often to see him, so why didn’t I let go before? I just don’t know.
Out here I have learned much, read 35 books so far on various aspects of life, nature, mental well-being, love, thankfulness and how to be mindful of everything. 3 months is a long time, and not every carer can take such a break, but I could and did. That time has been well used, not a minute of it wasted and now I find I am stronger than before. I have let go of some unhealthy habits, some unhealthy anxieties, fears and thought processes. I don’t know where they’ve gone, but gone they have. Sleep is peaceful. Inner turmoil may still rise, but it does for all of us, carers and not carers alike. I have learned, again through much research, how to refurnish my mind, to redecorate it, to clean the filthy windows so that I can really see the majesty of life. Someone once said that it isn’t what you see that counts, it’s how you look. Eyes turned inward can be helpful for a mental spring clean but it is out there that lifts me.
Our minds have this annoying tendency to hang on to the negative. I don’t understand why that is, but it just is. It takes study and training to rewire a lazy brain. When I say ‘lazy’ I mean one that believes there is no hope or joy or future beyond whatever gloom I read in the news or hear from others. My brain was lazy when I came out here, defeated, exhausted, hopeless. I cannot imagine that now. I have watched and heard of many carers in my situation who can see no future. I get it. Who can see a future when the present is such an unknown? When I was encouraged to consider a future, I felt angry. It’s ok for you (I said) with your chance to make plans, move house, book dinner/a holiday. In other words, to take time for granted. I have had that all stolen from me. However, that way of thinking allowed to develop can only ever destroy and I have no plans to be destroyed. So, how do I elevate this cave thinking?
Books. Research. Study.
If we want something to change, we first have to change something. And, in the life of a carer, that something is me.