So much to get right

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

I don’t know how I got there or what made me do it but I woke this morning not on my left side, more twisted towards it, something that meant I had been for who knows how long putting pressure where it hasn’t…..

 

 

 

UK Roulette

I warn you know that some of you will disagree with what I am writing today, but this has to be here like all the rest of it as it is a true factor of my life and what MS has made me and others have to think about.

Years ago when I was first diagnosed with MS and I was facing an unknown future with a progressive illness, Adam and I had what I can only describe as one of our rare arguments. We were right at the beginning, with little idea of how quickly or slowly this illness would take, or what it would do, but I felt a need to sit down and discuss something that I had actually put a lot of thought into a long time before and my opinion hadn’t changed. I think we all think about the end of our lives as we edge closer and see more of the elderly world around us. Like many I had visited old peoples homes and seen people sat there with no sign of life there other than they were sat in a chair, and like many I had seen a future I wanted nothing to do with. I don’t remember who the person was now but there had been a major new story about someone who had taken their own life as they had been dieing of a slow debilitating illness that was stealing their mind bit by bit. I at that time sat and thought about it, thought what it would mean to be in that state or worst still to be in the final stages, when you would be locked in a body with no way of communicating, I had decided that there was no way I would want to live that way. It wasn’t a glib thought or something that I couldn’t even find inside me an opposite argument that stood up well enough to give me any doubt.

Adam and I had only been married a couple of years when my MS turned progressive and it was clear from all their test that I was on that downward slope. I don’t remember when or what caused us to talk about it but I was faced with a brick wall that I couldn’t even find a crack in. I tried over several days to get him to understand that I wanted to set up a “Do not Resuscitate” order with my doctor not to take a vile of cyanide there and then. I think at that point even Adam would agree now, that part of the reason I couldn’t get through to him was his age and his lack of real understanding of what the life ahead of me was, I doubt if I would have been any different in my early 20’s, and it was clear it wasn’t an argument that I would win.

A few years ago again because of the News we talked and this time I didn’t even need to argue, he was suddenly on my side. He had by then witnessed what MS was doing, how much pain I had to deal with and how difficult my life was and would be as time went on, at that time I was in my second year of living with a gastric nasal tube as I had lost my ability to eat, although it eventually did come back. I was painfully under weight, had to use a manual wheelchair but that was limited as I had little energy to spare, clearly I was not free to enjoy the life I should have been doing in my early 40’s. We were in agreement, it was a huge step forward but one that we stopped there on, until last night. I was me who brought the subject up and as always it wasn’t easy, it never is easy to talk about the real end of your life, but with in a few words Adam said he had thought it about it a couple of months ago, but hadn’t known how to speak about it with out it sounding as though he was saying, “well it’s time for you to go”. With the clear signs that I am loosing my memory and finding talking and so on harder and harder, that we have now got to take some action, before it is too late and someone tries to say that I don’t have the metal ability to make such a decision. At the grand old age of 51 I have to make decisions about the way I die, not many of us have to really think about it until at least another 10 years time, if not much later these days. I have no doubt what so ever that if it means I might die a few years earlier than I have to, I would rather die when I wasn’t a vegetable, either sat in a chair or lain in a bed. I know that I will be taking a risk, a risk that something might happen the day after I sign it and that will be it, but I have to, as I am not allowed in this country to choose my own time and place of going. If the law was different then my choice would be different, I wouldn’t sign a DNR, not yet as I would know that what I needed to give permission for, was for me to decide that I can’t take any more and I want to call it a day.

It is a huge argument that no one seems to agree on, but clearly I am still able to decided for myself but due to my illness I can’t wait and take an overdose of something as I might not be able to do that, Adam helping me would mean him going to jail, so what choice is left. A DNR, with the risk attached that I might have an accident that I could get through, but my heart could stop, but I have signed a piece of paper saying let me die. It is a risk but the faced with that and the horror of where I will end, it is an easy choice to make. As I said it isn’t something many of you will agree with or understand, but it’s the way our world is and we all live and die within the laws that it makes.

Now, well now I have to find the forms and make sure my wishes are known in every place that it matters and hope that possible accident doesn’t happen, until I have lost all of my marbles, a strange legal game of roulette.