How could she?

I opened an envelope yesterday that shattered something I have held onto for over 30 years, a promise I made to my son. I sat here with tears flowing down my face and an anger like none I have felt for years. Yet again, my Mother has screwed up my life, and I haven’t even seen her for 15 years. That woman has spent her entire life either judging me by rules no one would understand, or by doing things that make no sense. I had asked Adam to fetch from the chest by the TV, all my papers, which have all been stored in one large brown envelope. It contains everything about me, from my birth certificate, my scattered qualifications, right through to my divorce papers from my first marriage. Amongst them, I knew there was an envelope that contained the deeds to my son, Jefferys’ grave. I needed all the details so that I could finalise my plans for my own funeral. When Jeffery died, my Mother bought the plot for us, as we quite simply couldn’t afford to, when she did, she handed the papers to me and said that it was in my name, for our future use. I had no reason to ever look at it from then, until now. In fact, the only time I gave any thought to it was when I got divorced. My ex and I discussed it and as my Mother had paid for it, and I intended to be buried in Aberdeen with Jeffery, unlike my ex who had no other connection to the city, and with our joint belief that the grave was in my name, no we didn’t open the envelope and read them, well I logically took the deeds with me. When I opened the envelope yesterday, I couldn’t believe my eyes, what I saw there wasn’t my name, but my ex-husbands. There it was in black and white, the end to my promise, and my choice.

It took me several minutes to compose myself and to start thinking logically about it all. There had to be an answer, and I simply had to think it through rather than react. I phoned Aberdeen City Council, the people who issue the deeds. They confirmed what I thought, either he has to sign them over to me, or if he won’t, them to give me permission to have my ashes interned there and a small stone erected. Either way, he has to sign one of two forms, which are in the post to me now. I haven’t spoken to my ex since I tracked him and my daughter, who he had taken without my permission to Auckland in New Zealand to live. Clearly, we aren’t on the best of terms. By chance, they are now both back here in the UK, through very different routes. Despite what he did to Teressa over the years, she chose a few years ago to rebuild their relationship. I have done the only thing I can, I have asked her to talk to her Dad and hopefully get the papers signed over to me. On one level, I can see no reason why he shouldn’t, but on an another, I fear he will simply demand that I send the deeds to him. He knows very well how to be mentally cruel and although Teressa seems positive about the outcome, I can’t be so sure.

It is amazing how one small action, so many years ago could have such an impact. The more I stopped and really thought about it, the more I realised that my Mother, although divorced herself, put his name on it, not out of any misplaced trust, more out of traditional values. One that said, he was my husband for life. When she did it, she couldn’t see what the truth of our relationship was, or how it would end. It just annoys me that once again, she is managing to tear away at my life. Since I married Adam, she more or less cut me out of her life. We had some contact by phone for a few years, then when I became ill, it slowly tailed off. When she became ill, my brother never even told me, it was after months of hearing nothing, that I eventually made contact with him, to hear she was in the hospital, about to moved to a care home. Despite promising to keep me in the loop, it took until this Christmas, 2 years on, for me to even find out where she is. Clearly, I am not wanted as part of anything now, any more than I have been for the bulk of my life. I am fed up of being seen as her “duty”, rather than her daughter.

So now my plans are in the hands of Teressa, it will be up to her skills of persuasion for me to be able to carry out what I always believed was a foregone conclusion. It just shows you how one tiny action, taken many years before, can screw up your future. Oddly, I remember when I left my first husband, my Mother actually asked me if I had the deeds in my possession. Surely, that would have been the perfect opportunity to tell me what she had done. Just having something in your possession, isn’t enough in the eyes of the law, it’s down to true ownership, not possession, despite the nine tenth theory.

I could really have done without all of this. I was feeling bad enough before I opened that damned envelope. It is yet more proof that stress isn’t something that does anyone any good. On the good side, I also opened another envelope yesterday, well rather Adam did. I now have in my possession, my DNR papers, and these papers, do have my name on then and are signed and ratified by my doctor. Just as the old one that I had, it has a time limit of five years. The only thing that the law change has brought about, as far as I can see, is a standardised form, and the fact that it doesn’t need an outside witness, and that the form stays with me. I don’t know if it is normal, but Adam has agreed with me that it might be an idea when I am next at the hospital for an appointment with one of my consultants, that we ask about it being added to my hospital records. I know it’s a belt and braces approach, but I really have no desire for anyone to be bouncing up and down on my chest, or having high voltage electricity coursing through me, I’d rather go peacefully.

I think I had been awake today for less than ten minutes when I was again aware of being exhausted. This morning was the first time ever, that I actually struggled to pull myself round enough, to be able to switch off the alarm clock. I have been struggling all day long. Today, the worst pain is in my lungs. I don’t know what is going on, or why they are so painful, but I am aware of every breath. To be fair, it’s more of a constant ache, rather than what most would call true pain. My diaphragm, though, well that’s another story. I am more than aware of what all my muscles can do, when under the control of my PRMS, they really don’t have to show off. I guess this afternoon will find me back in bed, not that it does much good, but somehow, it’s hard to fight the theory that going to bed, makes you feel better. Where did that stupid idea come from in the first place, probably something else I owe to my Mother. It’s amazing how what we are taught as kids, stays with us.

 

Please read my blog from 2 years ago today – 06/02/2014 – A girls best friend

This week is disappearing at a speed I haven’t felt for quite a while and totally without any reason that I can think of. I always thought that time flew when you were busier than usual, but I’m not, just ticking……

 

 

 

 

 

It’s good to talk

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.

memorial-tag-jessop

 

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…..

 

 

 

 

Take a breath and read

Just like everyone else I hear daily that the medical profession are either making breakthroughs, or need more money to work on a cure for some illness or other, but unlike many, I know I have a somewhat different reaction to all theses pieces of news. I all to often can’t help wondering if we are interfering just that step to far, with both nature and although I’m not really religious, the only way I can put it is to say with gods plan. There are so many illnesses out there that seem to only affect the elderly and I do totally agree that being old isn’t a reason to ignore someone, but I am left questioning how long do we payout to extend a full life, when that same money could be used to not just improve, but to give a life to a child.

A few months ago I was offered a drug that no one really knew if it would help me, I was also told it was very expensive and an application would need to be made to N.I.C.E. for them to decided if I could have the treatment, I said no. I couldn’t control where that section of the NHS budget would go because I wasn’t using it, but I found the idea of something like that even being offered to anyone, just pure madness. Yes if it had been a case of the company who made it wanting people to try it on, free to the NHS then I might have felt different, but that wasn’t the case at all. As I have written in the past I personally have tested every medication that I have been prescribed, if the reality was I couldn’t feel the difference, I have stopped taking it. It isn’t just a case of not having more medication in my system than I need it is also a reality that my not taking it, it is also saving money down the line other can benefit from. I honestly believe that this is the first questions we should all be asking ourselves, do we really benefit or would someone else benefit more? It is a fact that almost every house in this country had medication sitting in a cupboard that where not taken, even when prescribed, if you don’t want to take them, well tell the doctor and don’t take the prescription to the chemist. Think about it before you go next time.

I can no longer remember what the conversation was triggered by, but I remember in my late teens making it totally clear to my family that should the occasion occur, I would never accept a transplant operation of any organ ever, a decision I have never changed to this day, equally I don’t carry a donor card. Before anyone says all that would change if it happened, well I was a hairs width away from needed in liver transplant years ago and I did refuse being added to the list. I am not squeamish or anything and I have no problem with the idea of a transplant, for me thought I just think it is fundamentally the wrong thing to do. I was given one set of organs, each there to do their job, for as long as they were created for and it is up to me to keep them working, if I fail, they fail. I am aware that illness may be the root of them failing but that is the game of life, sometimes it works, others it doesn’t. Simply because of the constant coverage on TV clearly there are far to many people out there who haven’t taken the time to think, really think about it personally means to them. Once thought through, it should them be discussed with every member of your family, as you never know who will be there to speak for you should it be needed. Then finally if it is your choice, get a donor card and carry it with you always. So far my wishes can’t be registered but I have just this morning sent an message asking why you can’t register that you don’t want to donate, the reply should be interesting.

In all illnesses there always seem to be more and more ways of experimenting on how much more the doctors can do, every tiny bit of research costs and all to often it is the drugs companies who grow richer. I can’t help wondering why they don’t spend more themselves rather than letting charities pick up the bill. I am equally sure that there are if we were asked, far more people with chronic conditions that would be happy to be used to test what works and what doesn’t. I offered once and the doctor smiled and said “it doesn’t work that way”, why not? I don’t ever expect any medication or procedure to appear that would cure or even improve my health, but I would be a tester happily for those who follow me. I strongly believe that all research though should be centred on preventing or curing them when first diagnosed, rather than improving them once they are established. Yet it still seems to be what it is all focused on. I have no idea how any of us could influence change as that is far harder than talking to our loved ones.

I suppose the final section will be a little obvious to some, but I can’t help wondering what is the point of being kept alive well past a respectable life time, simply because the doctors can do it. When some one has lived a full life and their bodies are tired and are ready to go, should we not let them go in peace, rather than pushing them to live a day, a week or even a month more. I actually can’t help feeling that we have forgotten how to respect life, where is the respect in someone lying in a hospital bed, with no real hope of any future? I have struggled often with the thought that people in their 80’s & 90’s are kept alive by their families in ability to let them go. Yes we all love our families, but I can’t find love in constantly restarting a heart that is clearly to tired to keep going. It may be the biggest decision we have to take, but I honestly feel we all should discus it fully with our families and if it is your conclusion to consider signing a DNR.

I know these are all questions that are incredibly personal, but I also think these are questions that far to many avoid even thinking about, which to me is as bad as not respecting the wishes of others. It is actually a great feeling knowing that I have made my decisions and that I know those around me know them to. I can’t change many of the things I have written here, but the little that I can do I do, if more of us did maybe the world would have to sit up and listen to the people who live through all of this.

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.