I managed this morning to speak to my doctor, to get the new level of Gabapentin, made official and for him to write a prescription to make up the difference, until, my next two monthly prescriptions are due. I probably speak to him normally, about once every three months and due to my bad memory, I always forget to ask a question that I have wanted the answer to, for about three years now. How to arrange for my wish to have a DNR added to my notes? I did have one set up about 13 years ago, but I knew that all the rules in Scotland had changed and the one I had, no longer existed. I had tried to find out how to go about it online, but as always, what you want to know, isn’t there. I could find out how to go about it, in almost every other country you can think of, but not Scotland. Today I remembered and asked what I thought like the previous time, was the start of a convoluted process. I was totally shocked by his answer, it’s quite simply a form, that he can send to me, I fill it in, and it just stays with me. Quite rightly, he said that it is mainly used when an ambulance is called to the home, so the place it is needed, is here with me. Of course, he asked the obligatory questions, was I sure and I simply said yes. The form is on its way to me.

I remember when I first mentioned a DNR to Adam, many years ago now, he said he couldn’t agree to it. For those who haven’t been reading for years, Adam is 17 years younger than me, so at the time, his experience of life, was the stumbling block, just as it is for many. I don’t think he was any more than 24 at the time and really hadn’t even managed to get his head around what was wrong with me. The fact that I was saying that if my heart stopped that I didn’t want it started again, sounded like I was saying, I wanted to die. We had been married a handful of years and although I was clearly by then having problems, he couldn’t see my future at all. Just as he couldn’t understand why I was saying that I wanted to choose when I had had enough or that if my heart took the lead and stopped, that was it. None of it made any sense to him and I wasn’t going to change his mind, at that point. I think it took about another 5 years, for him to start to understand my feelings and views. Not because I was constantly talking about it, but because different things appeared on TV and occasionally, I took their lead and tried to have a conversation.

In some ways, it has been the longest conversation of my life, but as time passed, as he matured and as I became sicker in front of his eyes, he slowly, understood both. Life is full of difficult conversations, things none of us want to even consider, but that is one of the nasty things about illnesses like mine, it force us into having to speak. I actually believe, it is another one of those discussions everyone should have, if they share my thinking. We owe it to our partners to talk about it, as soon as we have truly thought through all the ins and outs. It doesn’t matter what age you or they are, it will be difficult, but the sooner you broach the subject, the longer they have to come to terms with our wishes and, to truly understand them. None of us wants to die, but the way I see it is, if my heart stops, it would be because my body doesn’t want to go on. Yes, I might live another 4 or 5 years if they brought me back, but, with my health only going one way, with a heart that clearly isn’t fit and healthy, on top of everything else, what would those years be like? There are few surgeons out there who would want to take me on, what with my PRMS and COPD, not to mention the rest of them. I see it as nature taking its course.

There are some things in life, that I have realised recently, that we have to do, just to give us peace of mind. As you already know, I have been looking into the arrangements and ways of paying for my funeral. This weekend, I discussed it all with Adam. For the first time, it wasn’t a battle of emotions, it was a straightforward discussion about something that is a fact none of us can avoid. This morning, I have emailed the funeral director of my choice, and informed them, that I am ready to go ahead and go through all the final points and to pay for it all, apart from what I would like to do, about Jeffery’s headstone.

I started last week looking at all the possibilities, the most obvious would be to remove the stone that is there and to replace it with a totally new stone. There was something about that, that I just didn’t like. I don’t know why, but I see it as his stone, something that his father and I put in place and bears his fathers and what at the time, was my surname. I don’t know why, but I feel that it should stay that way, that adding my name, which clearly now has a totally different surname, just isn’t right. That stone, is his, and his alone. Nothing takes away the fact that I am his mother, or that I will in time be there with him, but I feel that my marker should be different and sat beside his, not replacing it. The first issue with that is the size and how to go about it getting around the problem of space. I have found something that even if space wasn’t an obstacle, that I find rather appropriate, especially due to the way I have spent the last 9 years and the foreseeable future.

There is something now called a “Tag memorial”. For those who are savvy with the modern world of the internet and smartphones, will already know, that a “Tag” is something that you scan with your phone and in this case, will connect you to a website. The site can contain a simple profile or a lot more, I want it to be a potted history of me. You can put anything that you want on your page, photo’s and video’s, anything that will show the reader, who you were, which is far more than just a grave marker ever could. I mentioned it to Adam on Saturday, we didn’t talk about it in great detail, but when I said that he and Teressa could build my memorial page, once I was gone, he seemed quietly pleased. I feel it will be a great way of working through their grief and to let them, the two people who know me the best, to be part of the whole thing. Even more, than they would have, if I had gone for the traditional funeral, which as you know, I don’t want. The picture below shows what the finished stone would look like, except it would have to be in either black or grey granite, due to the rules of the cemetery where Jeffery lies. Personally, I would prefer it to be black, which I doubt will shock anyone who knows me. This morning, I have emailed them to find out all the cost attached.

I can’t tell you just how much getting all of this sorted out, is helping me. Yes, there are still many things that I need to look into, but even the parts that I have, just make me feel more secure in my future. I know that might sound a little odd, but if you think about it, we all feel better when we have our futures planned out when things feel secure and everything is in place to keep it that way. I can’t plan a career, the next holiday or house. I can’t plan as many do about a retirement or dream about those golden days, their not going to be there for me. Now that I have done all of this, even if I could look forward to strolling on a beach somewhere, I think I would still be happier knowing I was making things easier, for those I love, and that they will know, that it’s my wishes.

Please read my blog from 2 years ago today – 02/02/2014 – Living with Pain

Yesterday’s pain took over my day, just after I finished my post I took the logical step of taking a long overdue morphine boost, it turned out to be my first of three. Having not slept properly from 5 am on, I found the…..