Before my very eyes – or more poignantly, before my amazing wife’s eyes – I am turning into an utterly cliche 1950’s man. Just sit me on a rocking chair, lend me a woolly cardigan, pop a pipe in my mouth and I’m there. Perhaps a pristine copy of the Daily Mail would complete the picture. (Headline of the day – ‘For goodness sake stay seated men! Why housework is good for women’)
As my mobility, my balance and my dexterity reduce, so does any semblance of independence. I can hobble a few yards around the house with a walker, though I’m only really safe in a wheelchair or sitting down. I can’t carry food or drink, I can barely prepare anything, and there are times when I can’t get up out of bed. Or more scarily up off the floor after a tumble.
More and more, my wife, and sometimes my children, are edging towards becoming my carers while I just perch in the corner like some feudal Lord of the Manor. I hate it with a passion, while Mrs W and the children bear it with amazing love and patience. Glass of water? Yes sir! Plug my iPad in? No problem! Can you turn the lights on? Of course! What would you like for dinner tonight? Do you need the chair moving? Can I move the walker nearer? Need any help? Are you alright? Need your legs lifting? Put your socks on?
It’s all the more painful for me that I have to lord it over the household because I always aspired to be quite the opposite as a husband. I’m seventeen years into a wonderful marriage and when I first met the future Mrs W, I instantly felt I was punching way above my weight. Still do. Almost overnight – this was 1999 – I reinvented my philandering, selfish, slobbish, lazy self to become Mr Modern Man… I cooked most of the meals, I did the washing and washing up, I made the bed and changed the sheets. Hey, I even did the ironing and cleaned the house. She was the beautiful and brilliant career woman, I slotted in merrily as the proud, devoted partner.
Every single one of those chores is now beyond me. Sigh… (I know there’s the odd jealous person reading this, but believe me, it hurts). My greatest physical weekly achievement is to sort the sock pile, and even that usually slips to fortnightly.
I think I first became aware of ‘carer creep’ three or four years ago when the Sunday night job of putting out the bins began to be too much for me. I ‘only’ used a walking stick at the time, but I was always determined for the bins to be my job and my job alone. Thrilling I know, but as your everyday world is slowly and subtly stripped away, these teeny, symbolic things are important. Every so often those three or four years ago I would find that Mrs W had already moved the bins. It had probably taken her 30 seconds, whilst it would have taken me five stumbly, awkward minutes. And slowly as the months went by, it became an unspoken rule that my wife had assumed that chore. Many, many more have followed.
Carer creep. Perhaps the biggest and most unquantifiable symptom of Multiple Sclerosis is guilt.
Guilt, I know exactly what you mean. For me its the feeling of becoming more and more useless. Total frustration at not being able to do tasks that I took for granted not so long ago. Even worse, other people take them completely for granted
And it's a pointless/irrational feeling. Waste of energy but impossible to shift… Bah…
Thanks for sharing your MS journey. Yes, 'guilt' is a familiar concept for me as well… tho I have to keep reminding myself I'm not doing stuff on pourpose! [[[sincere friendly reassuring encouraging supportive hugs]]]
Big hug back!