Island Blog – Tribute

I always feel better after writing a blog. Is it, I ask myself, to offload, to teach, to preach, to, in other words, misuse my public forum? It’s a goodly question to ask myself. Once I have ferreted around in the cellars of myself, once I have come up feeling strong in my purpose, sure that it is not about me but about anyone else who may click with something I write, I write. This is one of those well-ferreted writes.

Today was troubled. The way it works for a full-time carer is this:- Day begins hopeful, trusting and light. Then one becomes two as the one in care descends the stairs, floating on metal poles and thanks to Major Tom, aka the chairlift. This is when the mode and mood of the day is proffered as IT. Now I have a choice and a decision to make. If the gloom descends with him, then I must attend to said gloom. I can resist it, but we all know resistance is futile. I can poke at it, ask questions, play bright, but I can hear my voice, in a slightly higher key, sounding sharp as badly cut tin. This won’t work. I lift my ass from my seat, round to the kitchen, make coffee, hot strong and black. Not enough. This gloom is following me, I can see it, smell it, feel its touch on my back. I swing about. Go Away! I hiss, but hissing works no better than resistance. I can feel it pulling at my skin, seeping in, changing me.

The day rolls slow. At 10 am I bake a cake, thinking, this will do it. It’s my usual flat pancake but with cherries which makes flat okay. Taste is everything, after all. We wander through the morning, him restless, moving moving moving all the time, the click and whir of the wheelchair setting my teeth on fire. Ears, I say, stop listening! I have always believed, and proved, that ears are obedient souls, if you organise them right. Pulling birdsong forward and pushing clicks whirs and other unpleasant noises back works well, for a while, but I must be vigilant. One relax and the click whirs are wild in my head whilst my teeth could burn down Rome, even from here. I read the affirmations on my kitchen wall. You can do this. I’m doing great. I believe in my dreams. This too shall pass. Those sorts of affirmations. Ya di ya I tell them today, but I don’t rip them down as I have in the past because that is resigning myself to the gloom. I cook, walk, feed birds, watch the clouds, berate Lady Moon for not showing me herself at 4 am and keep going, keep going, keep going.

It’s like holding up a bridge every single day. Just me (or just you). Mostly I can do this (so can you). Mostly. But it is exhausting, endless and with no end in sight. I have to be cheerful for two every single minute of every single day (so do you). I have to think ahead, plan, make sure the way is clear, be kind, laugh, smile, show up no matter how I feel or what I want. I could go a bit further for a walk. Easy. Not. I still could, but I don’t. On Gloom days I am fearful. What if he falls, gets more muddled about this or that, what if he just feels scared and needs me to hold that heavy bridge up?

This is caring. You who do it, already know. Outside of our lives are many who support us and show great compassion. We need it, oh boy we do, but they haven’t a scooby about what it’s like for us, minute by minute, day by endless day and I hope they never do. Holding up a bridge, alone, scared, ageing, tired, exhausted, doubting, weak and sleepless is something we have fallen in to. We won’t abandon our post but the ask is great.

I salute all of you who care enough to be caring. This is my tribute to you.

10 thoughts on “Island Blog – Tribute

  1. Thank you for those broad shoulders, that caring heart and your inspirational words. We went through this for nearly ten years … in varying degrees of my Dad’s needs … it is terrifying, lonely, heartbreaking, life enriching occasionally, and exhausting. My beautiful wonderful Dad closed his eyes for the last time at Christmas. you have no idea how much the caring role takes from you until you stop doing it .. but I suspect everyone does really … but … after … it is a beautiful place to be knowing that you loved, they loved, and you loved back in every caring way that each of you could and to know that the person they were is rested, peacefully rested .. at last. Take care of you Judy … take care of you others going through this xx

    • wow Elizabeth that is so encouraging. You are on the other end of not leaving your post, of caring with compassion and of, at the end, feeling ok about who you were inside all those stormy turmoils. You have inspired me. oftenly (my word) I wonder if there is an after……..thank you my friend. Love message. made my eyes rain. xxx

  2. I have been there for over five years as hubby battled with an autoimmune disease and was in heavy doses of prednisone. I remember well for months , no T.V. , radio, Vacuuming allowed, he didn’t like the noise. He was so jumpy and nervous. After five years remission happened for a few years, now he is back on prednisone again. I find the negativity is hardest to deal with and with Covid around my escapes are fewer. Walking the dog is a real help . Dog is always happy on a walk.

    • I identify! All electrical gadgets drive him mad domestic jobs have to be timed to perfection . As well as head injury my husband has low immunity from kidney transplant.Yes Covid adds to the problems. Change of personality comes with frustration . Bless you x

    • Living with negativity can confound your own sparkle, I know that. But you know what, you seem like a flipping strong woman to me and I barely know anything about you. Keep going. You know you won’t abandon ship but you can still sing shanties and read good books and sing songs and walk your dog. It isn’t what we chose, now, is it……? but we are no deserters and that makes me proud of you and of me. If I could find a wink emoji I would send it now. xxx

  3. Oh Judy….what can I say……absolutely nothing as I have no experience of what you go through each day! All I want to do is give you a huge virtual hug and let you know I can somehow feel the pain of it. I will yack on no more cos I have no right to do so, but send you love, blessings and hugs. 💕💕💕💕💕💕💕💕🙂💕

    • ah, Jan, thank you. There are many merry moments, in fact there was one today….as his wheelchair careened into a table, took it down (felt like in slowmo) and carried on. I looked at the wreckage and felt this laughter bubble up. It was, in the end, very funny. Thank you for being there my friend x

  4. Thankyou Judy. Mine is a different caring from yours but producing much the same thoughts and emotions. Living with a brain injured husband who at 76 is fit and reasonably well physically is hard. 30 yrs of living with this is hard for us both . For him its a truly hidden disability and no one outside of the family sees any thing to reveal it. Its tough , but i ll nit give up after almost 54 yrs! Many times i ve wanted to run away but i love him and he needs me

    • Gosh, my respect to you Ellen. Hearing a bit about another’s story is humbling. I am not usually lost for words but I find myself there. Know this, brave amazonian woman, that I have immediately stepped in beside you. I think it’s because you let me. Thank you. I so appreciate your contacts. You are a 150% woman too. High flipping five! x

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