I feel as though I am caught in stasis, that envelope I opened yesterday has stopped me in my tracks. Until I know if my ex is going to sign over Jeffery’s grave, all my planning and organising has halted. Part of me wants to just put it all to one side, to start on the next list of things that I want to find out about. Equally, I feel as though I can do nothing until I have completed the first list. It’s odd when you put together a plan of this nature, one that is so important to yourself, that doing anything out of order, just feels wrong. I had planned to sort out every detail of what happens to me once I am dead, then, to step back along the timeline from there, right up to today. Yes, I did sort of slip off the agenda when I requested the DNR, but that was more to do with opportunity than anything else. Somehow, making a call to my doctor about that one thing didn’t feel right. I had this feeling that I would be wasting his time, whereas, adding it into a call about my medications, meant I was killing two birds with one stone. To be honest, all of the final part, always seemed as thought it would be the easy bit, we all know how to find a funeral director, as millions do it daily, the steps that go before it, are the harder ones. Maybe that’s why I chose to start at the end and work my way back.
I have this need to find out about all the steps my life might take from here to the end. I want to know about what care is available and to find out about how I go about putting it all together. I guess what I am wanting is to be able to have a set of envelopes, just like the one I will put together, once, I have paid for and set up my funeral plan. It will contain everything that Adam will need. All the steps, including all the phone numbers of who he has to speak to, so he isn’t left like most people are, without the slightest idea where to start. The second envelope I want to organise is about the help, that is available to assist Adam with my care, as the end gets closer. I even want to find out about the local hospices, what they can offer in either just respite care, so he can have a break, or in taking on my full care, if it’s appropriate. That, though, doesn’t match up with my current feelings about my end of life, but, it is something I need to look into. Once more, the major stumbling block is the fact that I’m housebound. It’s not as though I can just call a taxi and pop round to take a look at them and have a chat. I don’t even know if there are costs attached to spending time in a hospice, or anything at all about their funding, outside of the fact they are charities. My knowledge about this whole area is zero.
I have always been perfectly open about the fact that if I am finding it all to difficult, that I am not adverse to speeding my end up. Which, of course, puts me into that horrid position thanks to the law, of having to choose, a time, probably long before I would have, if the UK practised medical euthanasia, but it doesn’t. I have to be able to take the action myself, so that Adam, nor anyone else, is involved. There are a limited number of ways I could manage that even now. My favoured, an overdose, has so many issues surrounding it, so I have a lot of research to do, to be sure that if I take that route, I get it right. Yes, there is still an if, to be honest, it all depends on two things, my dignity and how well they continue to control my pain. Which is part of the reason that I need to understand fully, all the options, as I get only one shot at all of this, just as we all do.
Right now, I have no care what so ever, other than what Adam does for me, and that doesn’t equate to what I believe is called personal care. I can still wash, feed and clothe myself, but the time will come when I can’t and I already know, that I don’t want Adam doing all that for me. Not to mention that he has a full-time job, and it’s just not fair to expect him to do everything for me. I don’t need an outsider to tell me that my strength is waning and that certain jobs are becoming more difficult. Outside of making a phone call to the Social Work Department, I don’t know where to start, or what they can even offer. I know that the time has come, where I need to take off the blinkers and admit, that the time for assistance, isn’t that far away. It’s hard, though, we have managed for so long, without even the thought of assistance, just making the mind shift, is still a problem for me.
There is so much about the next few years that I don’t have the first idea about. I don’t know what made me wake up to my future, probably just that internal feeling that I am moving into those closing phases. I’m not saying I feel as though I am about to die, anytime soon, it’s just that I feel I am beginning to fail, if that makes sense. I don’t like this idea that we are quite simply expected to take things as they come, surely we should be prepared, given an idea at least as to what to expect, and what can be done to help us through this process. I truly hate the way that the medical world will talk freely about our conditions, until you start asking questions about how it all comes to an end, and what to expect along the way. I just want to get from here to there, without any nasty surprises and without finding out too late, that there were things I could have done, not to just make the process easier for me, but also for Adam. There have been too many times in my life, that I have heard those words, “Well, if you had just……”. I want to speak to all those people who just love to say that, now.
Please read my blog from 2 years ago today – 07/02/2014 – Me or my body
Two Rooms Plus Utilities 