The price of help

It was Friday morning that the Social Services rep came to see us. I don’t remember her name, not because of anything bad about her, quite the opposite, she was an extremely nice person and wonderfully understanding of our position. I had thought that it was going to be another PIP type interview, and although there were similarities, it felt nothing like it. She wanted to see, not just talk about how I was dealing with my life. To watch me transit from my chair and the all the places where I had to, not just make her own pictures in her mind. We went from room to room, and I we talked about what worked and what didn’t for me. Not just because of how things are arranged as an OT does, but what the problems I encounter in every way. We landed up having a discussion about incontinence in the bedroom, weight in the bathroom and almost everything else in the kitchen. Somehow, that was the room where we landed up chatting about everything from food to meds, my issues with strangers and inability to deal with things like the mail. It was while we were there, that my Doctor called me back and the decision that Steriods were what was needed, to see if we can fight off whatever is happening to my arms. Which by there the way, there is a little improvement, apart from my legs decided to join in yesterday, but I have after all only taken three doses so far. Adam fetched them in the early afternoon for me, but I decided as they can cause issues with sleep, to leave them until the next morning. I am so glad that I started writing my posts a day in advance, as it allows me to handle my new stilted typing style, and the even stronger than usual case of dyslexia, that is centered in my fingers.

My body was a mess on Friday, it is almost as though, it for once was actually ready to perform to a stranger and to show them what life is really like. When we eventually made it back to the living room, it was then that we talked about what help I need and how to go about it. It was also then that we were told about what it would cost and how the two different systems work. The straightforward one is an assessment of our incomes, which would once they have decided what we can afford would shape the amount we would pay. If I have just one visit a week, the charge would be £25 at the full rate. I panicked when I heard that as I immediately, as I thought that that would be the charge for each and every call they made. Not so, they do understand that people couldn’t possibly pay out several hundred pounds a week or day, depending on how much help they need. There is apparently a cap. and once that is reached, the rest is free. My case worker would be the women who was here on Friday, and she would allocate the person coming out to me.

I need at that point to tell her about my fear of how such visits might go, due to a nurse who was coming to see me a couple of years ago. She was here, because of the problems I have with my bowels. They wanted to try giving me suppositories every second day, something I couldn’t do, because of my dexterity and the angles that my arm had to reach in. On three occasions, she left me crying on my bed. She hadn’t done anything wrong, but I couldn’t deal with someone sweeping into my home, shoving something up my backside and without even a goodbye, leaving me lying on my side, a position I have issues with as I can’t roll with ease, and then letting herself out. I just found the whole thing distressing, despite the fact I totally understood why she was rushing and I didn’t expect her to stop for a chat, but I did think she could have been friendly enough to make sure I was at least comfortable and at ease. I was reassured that nothing like that would ever happen. They too wouldn’t have the time to stop and chat, but they would never leave me if I was upset. If there was any sign of my not being my normal self, they would stay as long as possible, and phone the office with their concerns, whereupon Adam would be called.

They couldn’t guarantee that I would see the same people every day, but they would try to as much as possible, as we had made them aware of my difficulties with strangers. Different tasks are allocated a time slot, not just in the day, but in the length of time, they have for performing whatever they are here for. If it should prove to not be long enough, the time slot would be extended. It would clearly at first be a case of working things out to suit, but I was also told they wouldn’t really be able to sit and have a long chat, as they have tight routers to work through every day.

The other system, which will require another visit from someone else in about 6 weeks, who will go through all that we did on Friday again, then a claim would be placed from which we would be allocated a budget. It would then be up to us, to choose which company we would prefer to supply the care that I want, clearly their budget would always need topping up by us. It would mean that once we have the company we prefer, we would hopefully have more say about who was here and the amount of time, I needed them for, but again, that would depend on cost as well. She couldn’t tell me a great deal more about it, just that outline.

Even though we are unsure of the cost, we are starting with the first system this week. I am to have two visits each week, starting this Wednesday and the following Sunday. I have asked for help with showering, as it is the one thing that I am really struggling with and I’m not comfortable asking Adam to help with parts of it, plus of course, Adam is at work during the week. I don’t think I could handle having a more than two showers, but I honestly, would like to have more than one, especially during the summer.

It is amazingly difficult and tremendously emotionally exhausting to admit that you need help with something so personal. I think that I cried from half way through the time we were in the kitchen, right up until almost the time she left. There is little that I can put into words about how that feels. It is a bit like saying I have jumped over that line from still able in some ways, and on to what I know is a slope that can only ever go in one direction. I am going to let a total stranger into my home and have them help me with something that is about as intermit as it gets. Oddly, the hardest bit without a doubt is that mental leap, like stepping backward into childhood. It’s hard, so damned hard to do. I just want to scream, “How have landed up here?” not one, nor just loud enough for someone in my home to here. I want to scream it thousands of times and keep screaming, until every single person in this world, manages to give me a reasonable answer. Life shouldn’t be like this. My life shouldn’t be like this, and it doesn’t matter how much I know it’s just the way it is, or who dares to tell me that, I still don’t want to accept it, I just know that I have to.


Please read my blog from 2 years ago today – 06/06/2014 – A simple lesson

I am totally behind with everything this week, nothing to do with my health and everything to do with the TV! For a history lover and one who also is still learning about WW2, there is so much to watch at the minute, how am I supposed to choose between two things I totally love, reality and the past. I know even Adam can’t understand why I watch so many programs which seem to be about the same thing, well it’s…..