Although Adam is my carer, I do try to keep what he has to do to the minimum. I think the biggest job that I have had to hand over to him, is by far, the housework. For me, the person who did it for all the years before, well it was just a switching of roles. For Adam, I think he found the entire idea daunting, but he tried hard to reassure me, that everything would be taken care of. For a not just houseproud, but fussy person, this was rather hard to believe and even harder to sit and watch.

I had worked a full-time job, then came home to be a housewife, for many years. Both jobs were demanding and as a perfectionist, I could find no excuse for not being able to do both. As my health started to fade, I still pushed myself to be perfect. I can see now, that it was probably a stupid thing to have done, but I was at the time determined that no matter how I felt, everything had to go on, without any excuses. I was a tough act to follow, and worse still, I was still here. For Adam, it must have been a total nightmare in the first couple of years, as although I did my best to bite my tongue, I couldn’t help interfering. In all honesty, I was trying to help. I had many years of learning the quickest and most effective way or creating perfection, without the work that it appeared to take. Adam, though, was and is, determined to do everything his way. It still takes him half a day, to clean the bathroom. I used to do it in an hour, with a fifteen-minute coffee break included. He hasn’t learned from me, but after several years, I have learned to just leave him alone to just do it.

Years ago, I would get up at 4 am, not just to get ready for work, which took longer for every year as I got iller, but so I had two hours, in which I could do all the daily cleaning, other than the hovering, that I did when I got home. It was my way, of being sure we could be together each night. I had the freedom of starting work at 7 am and finishing at three, then home to hoover and take a nap. No matter what, that, will never be Adams way. He will never be the houseproud person I was, but he does what he believes needs doing, and that’s another reason, why I love my daughter coming to visit, as a cleaning frenzy ensues. To be honest, these days, I would rather the house wasn’t perfect, if, it means we can spend time together. It’s another of those values that you find changes when life goes off the rails.

Housework wasn’t the only thing I slowly became too much for me, cooking became a chore. I once had loved it so much, that I could see no issue in spending all my free time, over two days, making something that would be eaten in ten minutes. At first, it was my energy levels that got in my way of our gastronomic feasts. Food became simpler and more basic, but we were fed. Then my health stopped me eating. At first it was just the choking, then it would get stuck and finally, I felt sick all the time. Being old fashioned, I still cooked for Adam, but he wasn’t having it. If I wasn’t eating, he wasn’t going to let me cook for him, he could do that for himself. Even when I did eventually manage to eat again, it wasn’t much and cooking had become a danger zone for me. I couldn’t cook and I definitely couldn’t wash the dishes, if we wanted them in one piece, but I could reduce that chore by more than half. The dishwasher entered our lives for the very first time.

I know Adam hates the househusband side of his new role. He quietly ignores the dust on high shelves, or in rooms where a visitor wouldn’t be. Spring-cleaning isn’t a joy our home has even heard of, for over 9 years. I was the last person to have the total pleasure of washed the walls and ceilings, trust me, it was a twice a year job that yielded great satisfaction. Yet, he won’t even entertain the thought. To be honest, when I think back to the work it took to keep a home in the 70’s when I married for the first time, modern housework, including deep cleaning, is a doddle. We, at least, have a washing machine, tumble dryer, and a vacuum cleaner, I had none of them. Not until we scraped together the money to buy a twin-tube machine, to help with Teressa’s nappies, but, not until after she was actually born. Until then, I did all, and I do mean all the washing by hand. This, though, is 2016 and we have gadgets galore, but still Adams biggest dream is to employ someone, to do it all for him.

When I was first diagnosed and Adam said that he was going to take over everything as it was needed, my vision of our life now, was very different from its reality. It wasn’t that I actually thought about it at all, it seemed to me to be a natural transition. He would take over my role in the identical way, that I did everything. It didn’t even occur to me that there was another way of doing things, as I just did what had to be done. I wasn’t being fussy, difficult or even dictatorial, yes, I do now realise, that it could look that way, but that had nothing to do with it. I simply couldn’t see why anyone would want to do anything differently, or that there really was a different way to do it. Like everything else in life, if you want a clean house and good meals, well someone has to do it, and I was no longer able to. He told me he was happy to take over. He seemed oddly content to watch things drift into what I could only see as a mess, it didn’t make sense and it took me a long time to get used to it.

When it comes to the daily details of life, we are clearly chalk and cheese, in our attitude. I never thought that I would be content to sit in a room where I could see a speck of dust, yet I am. I never thought that I would ever permit such things as fish fingers of tins of anything, cross my threshold, but I do. Mind you, I still draw the line at eating them. These days, I am content with the way things were, yes, I wish we had the money to employ someone, so he didn’t have to do even what he does, but right now, we can’t.

Accepting and adjusting to our health, isn’t just about what our health physically and mentally, means to us. For me, I honestly believe it could cause me all the pain in the world and rip my brain even further apart, and that, would still be easier to adjust to, than all the things in my life I can’t do. The medical conditions we have to live with are just the start. All this, is probably the biggest missing part, from every description of any condition, I have ever heard or read. The biggest thing that it takes from us, are the everyday details of our life. The things we do without thought, the things that fill our time, they are our biggest loss. When I occasionally get picky about things, when I try to advise or attempt to correct, I’m hurting. Watching Adam do what I once did with ease, hurts. Every single time a duster appears or I can hear the hoover, it hurts. It should be me doing that, not sitting here like a useless piece of discarded rubbish. Seeing dust, hurts, not because it’s there, but because I can’t remove it and it’s friends. Every dirty glass or unwashed pot that can’t go in the dishwasher and is waiting to be washed, hurts. You name it, if it once wasn’t that way when I was healthy, it hurts like hell.

In the last few months, since I have felt myself slipping, that pain oddly has become easier. I don’t fully understand it, but I no longer hurt so much. It is as though I have reached a point where I no longer fret, my mind has closed the external out, as it has too much to deal with inside. As they say, every cloud has a silver lining, I think, I found this one.

Please read my blog from 2 years ago today – 19/02/2014 – Who copes

Sometimes I sit and wonder just what is the worst part of what is happening to me, or that has already happened, I try really hard to find an answer, but I never find one. I can find and name a list umpteen times…..