I had the most bizarre and wonderful conversation with Adam last night. It was 8 pm and I had joined him in the kitchen while he sorted out my medications for me and I sat using my inhaler. As I was sorting out the nebulizer I took what was the first opportunity away from the noise of the TV to tell him my discoveries of yesterday. In the past when I have suggested that it might be time to find out what help social services might offer, he has always taken it as some sort of slight on his ability to do everything that I no longer can, but I knew that I had to try again. This time instead of going over what help I feel we could do with, I put it in a totally different way. I explained that they would do an assessment, not dissimilar to the one we had the other week with the PIP assessor, then they would tell us what help we could be offered. At that point he stopped me, somehow he thought that that was part of the PIP assessment. He didn’t realise that they were totally separate and that getting one, doesn’t mean you can’t get the other, nor does it affect the other in any way what so ever. With that error corrected, I discovered another one, that I again didn’t even know existed, and the stress that it was and has been causing him for years.
Adam believed that if my health suddenly dipped and I needed someone here to look after me, he would instantly have to stop working. He saw his future as nothing other than having to care for me 24/7, 365 days a year. He literally crumpled onto the kitchen counter, as I told him that I could have someone here, paid for by the Scottish Government to shower me, make my meals and anything else I needed as far as personal care, unfortunately not the housework, but anything that went under the brackets of care, when he wasn’t here, and even when he was. It was like seeing a weight being lifted off him. He stood there, head down on his hands, slowly shaking his head, and with each shake, the pressure that he has been living with, lifted. The assessment would determine how much per week they would give us, up to I think it said was a total of £170 per week. The money can be either paid to us, so we can employ whoever we want, or, they will arrange the care and make the payments. He asked me several times if I was sure, and then just stood there looking at me and going over what he had thought again. I never realised just what was going around in his head, or that he hadn’t even thought of checking it out online. As you know, I have been searching for whatever it was that was pushing him down, for ages now, I think at last that I have found it. Every single day for god knows how long, he has been waiting for my health to attack me, and for him to suddenly be locked in this house, just as I am.
It was one of those conversations where his relief was so clear that he suddenly didn’t seem to want to stop talking. He started talking about how he knew some retired nurses who now took on this sort of care, and how he was sure that we would be able to find those who understand the fear that runs uncontrollably through my head. It was almost as though my putting his fears to rest, meant that he was suddenly free and was seeing possibilities he hadn’t even dreamt of. I hate the idea that he felt trapped with what were unfounded fears for so long. Releasing them was like an added shaft of sunshine had entered our home.
I knew that his fears lifted a little when I decided that my walking days were over. That day that I asked him to bring my wheelchair out of the cupboard and give it a clean, so I could use it daily in the house, I saw things change, even more so, when I said I was going to have grab rails fitted in the bathroom. I’m not an idiot, yes, I knew that from the day I first fell badly, that he had feared I would hurt myself so badly that I would land up in the hospital. I knew that he was on the side of the OT and wanted me to put all the crystal that our house is filled with away, he had this vision of my falling onto one of my displays and shredding myself on the glass. I knew that the day I fell and found that I could no longer get up, that it triggered the image of his Grandmother, who he found after 36 hours on the floor of her house. So yes, I knew his fears, what I didn’t know, was that the wheelchair and grab rails hadn’t removed it, he still fears I will fall. It doesn’t matter what changes I make, he lives his life in fear of what will happen to me next. He almost split with the smile when I mentioned someone else cooking my lunch, he knows that at times, despite all the burns and my saying no more, sometimes I do. I doubt that even if I had someone here when he wasn’t, he would still worry, that is him and I’ll never change that, but hopefully, I think I put just a dent in his fears.
So today, well today, I am going to look deeper and see if I can find the details of who we need to talk to, who can help set up this assessment. What we are hoping for just now, is exactly what I said here back in January, to get all the paperwork out of the way and to take the help I need right now, but more than that, to have the opening so when things do progress, we know just who to call. As I said to Adam last night, my health has dipped dramatically in the past six months, if it continues this way, in six months time, I will probably need not just what I can think of now, but more.
I so wish that I had known that Adam was carrying all that around with him. To be honest, that was the last thing that I would have thought of. I was so sure that he was just finding the things he has to deal with now, not the future that was the problem. At first, I couldn’t understand why he hadn’t spoken to me, but when I thought about it, he quite honestly didn’t think there were any other options or any possible alternatives. I get the impression that he felt that as he wasn’t earning masses of money, that meant he couldn’t pay someone to care for me, so logically, it could only be him. I now understand that bit more of his world.
It doesn’t matter how close you are, or how much you love each other, none of us ever talk about those things we believe can’t be changed. Why would you? All the talking in the world won’t make you a foot taller, or three sizes smaller in dress size, so why should it change anything else that is unchangeable. When we perceive that something is what it is, we tell ourselves we just have to live with it. If this has shown me anything, whatever it is we fear, we all really should talk about it, regardless how stupid it seems. I don’t know how long Adam has been living with this extra stress, I would guess that it is more likely to be years rather than months. At least we have made a start, we have the source and I just hope, that we can now, also obtain the answers.
Please read my blog from 2 years ago today – 13/05/2014 – Quack quack
A few weeks ago, someone, I knew from twitter asked if I would be interested in their own personal work they were doing on curing different illnesses, it is usually the type of question that I would straight away thank them for thinking of me, but no thank you. Why I said that I would be interested in reading their suggestions I don’t know, but I gave them one of my email addresses and waited to see what arrived. I had made them a promise not to discuss the details and as I don’t break promises I won’t be giving you the details here or anywhere else, but I felt I had to write something about it as I found myself just a little worried not by what they suggested……