Another day, without another dollar. Not even the sayings I heard bandied about when I was a child fit my life any longer. I’m not complaining, some of them were rather stupid in my opinion. For a start, I live in Scotland, what good is a single dollar to me? So OK, I’m being facetious but “I’m allowed to be, I’m dying”. I always wanted to be able to use that one, but now it’s true, well it doesn’t have the fun it once held when my Gran got away with everything, by saying it. I can still remember her sitting there spoiling me rotten by stuffing sweets in my mouth, as my Mother scolding said “Mum, stop it, I’ve told you before, she doesn’t need sweets”, and Gran would wink and hand me another one, while saying, “I’m allowed to spoil her, I’m dying.” It wasn’t just said when it came to sweeties, it was her answer to anything anyone told her off for, and it seemed to me, they told her off a lot, even more than they did me, which looking back, would have been hard. Gran’s slow demise and it was slow, about 12 years if I remember correctly, is the only model I have for how you do this gracefully, with a touch of disgracefulness on the side. As it turned out, I wasn’t there at the end. When my parent divorced, we lost contact, and by the time I could even bare to talk to my Mother, well my need and trust for my family were gone. Hurt is a very deeply plunged sword when you’re abandoned to the clutches of a monster, by the person who should have protected you. Even now, my relationship with my Mother, is in ribbons, too much has happened, too many years have passed, for it ever to be healed. I can, though, look back now and see my Gran was a renewed innocence, but then, I just saw more swords. When the day eventually came, I was at the other end of the country, having managed successfully to evacuate myself from the war ground. My first marriage took me nearly 600 miles away by train, as far as I could get, and that was the cherry on top of the whole thing. As luck would have it, within a month of my escape, she took to her bed. Two weeks later, she simply went to sleep and never woke again, the perfect way, if there is one, for a life to end. I didn’t actually find out for over a week, by which time, she was long buried. Not having a phone, meant I wasn’t told until I did my monthly check in with home. I never understood why I kept doing so, somehow those rules of “honour thy Mother and Father” never truly breaks, regardless of what they do to you.
No one tells us, or teaches us, just how to head into what is one of our most important journey in our life, how to die. It is our ultimate action in life and so important, as it is truly the only thing you ever get only one shot at, no rehearsal, no practise run, it’s a one off and if your not happy with it, well tough luck. It’s coming up now for 3 years since my consultant set my personal countdown ticking, and it’s a sound that no matter how hard you try, you can always hear, it’s there in the background of everything. I’m not meaning to imply that you don’t forget, or that it’s an oppressive element in every day, of course, you forget at times, but it always finds a way to enter into your head again, it’s never totally gone. Just like my Gran, I am in the midst of a long slow demise, but unlike her, I don’t talk about it almost every day. Maybe I should, maybe she had the right approach, to turn it into a joke, but somehow, I find it easier not to. Not for my sake, but for Adams, I don’t think I could ever find the right words, that would make him ever smile at that subject, ever. In a way, though, I do think she had the right approach, if maybe a little too frequently. Talking about death freely, I believe would make it easier for those of us facing it. There is nothing more foreboding, than something that is a taboo subject.
When I was diagnosed with PRMS, I like anyone who is diagnosed with a progressive condition, I asked how long I had to live. Whatever variant of autoimmune condition you have, the answer always seems to be the same, they don’t know. To this day, I still don’t believe that, I am sure, that they could give a good guesstimate, an average if you like. It was very different with my COPD, that is where my clock comes from, 10 years. Even with the unknown factor, of my PRMS, which is slowly closing down my lungs, they were happy to give me that guesstimate. So, OK, it’s not accurate, but, there is an odd comfort in at least having a goal, one that lets you sort out your thoughts, not to mention, all the legal bits that are needed these days, and of course, that funeral. I still have 7 to go, but it’s the first of those three, that I am still toying with, it’s still my thoughts, that are my biggest issue. I thought the hardest thing would be just accepting the fact that I was going to die before, what is commonly called “my time”, but what is “my time”, because when you think about it, we really don’t know. It’s not as though we are born with an expiry date and our health has changed all that. “Our time” is quite simply when it happens, there is no magic date or true expectancy.
Knowing I’m three years into my ten-year clock, ticking its way down continually, doesn’t bother me at all. It’s the actual act, those last hours or minutes, that I can’t get my head around at all. In fact, I would extend it a little further, let’s say that last weeks. I could write you a list that would just grow and grow as I went, from the obvious to the personal, my questions just keep coming, as I don’t have that training, the knowledge or experience to know where to start. Worse than the fact I have so many questions, I don’t know who to speak to, to find the answers I so desperately need. Something inside me says that this isn’t something to read about, it’s something that needs to be discussed. Right now, all this is in the front of my mind, thanks to those damned drugs. No, I didn’t think I was dying, but I had a feeling that what was happening to me, wasn’t that far from the truth. As I’ve said before, I don’t have a fear of dying, if death took me that way, suddenly, well that would be fine, but the truth is, it probably won’t be that way at all. How is it, in this enlightened age about everything, something we have been doing since the first human appeared, that we can have no idea, how to be sure, it’s the way we want? How do you have a good death, not just for you, but for those who love you? How come, no one teaches us this stuff, as I don’t know where to start or where to turn. For the first time in my life, I am at a total lose and I feel like I have missed something along the way, that important lecture, that tells us how to do this just right.
I’ve never seen someone die, nor even a dead body. I have only been to three funerals in my entire life, the first, my own sons. Death has been so skillfully kept away from me, that I now feel as though I know nothing about it at all. If I were mobile, well, I think, I know the people I would go and talk to. I believe, that I know those who could put my mind at rests, but I can’t get to them, and to get them here, seems wrong when I still have years, not just months. Once you are housebound, it’s not just living that becomes more difficult, it appears death does too. I feel like an innocent, facing what appears to be a devil, but one I know can be tamed, if, I just had the right tools, tools that like so much else, are just not available to me. I also know that in the next couple of days, I will pack this all away, put it back in the box it escaped from last night, but I also know, it won’t stay there. This is something that haunts me.
Please read my blog from 2 years ago today – 11/01/2014 – Control of me?
I had a subject that I wanted to write about this morning but something made me do a quick search on my blog to see if there was anything that was close to today’s post and there was, not only close……
I do not know how to reply to this, there are so many things I want to say but I do not know the right words, does that make sense? You are right as a nation and probably a race we do not about death like we should. My parents have a fully paid up funeral plan and are speaking to us about their funeral and what they want. I hope this is 20+ years at least as they have only just retired at 60 but you just do not know, my granddad died having suffered from Alzheimer’s disease for many years. I think my mum saw the disagreements over his arrangements and decided to sort her own. We had been uncomfortable talking to them about it initially but have now accepted that. My mother in law has also given me instructions that she wants at her funeral. I think we should speak about this sort of thing much more freely so our loved ones know what we would like our final goodbye to be like, as tough as it is to discuss. I can imagine how having a ticking clock and time it can make it a much harder taboo to broach. I hope you find someone to talk things through with, maybe a close friend or support group near you or if you are religious maybe your local pastor?
Thinking of you best wishes Seachy x
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If I could get out of my house, then there would be open sources, who I am sure you be more than happy to talk to me, but being housebound, makes that so much harder. In time, I am sure most would be happy to come to me, but right now, I guess I have too much time left to bother them. That doesn’t stop it bothering me. I guess I find it even harder, as I seem to have become the person who has the answers for others. This time I don’t.
Thank you for taking the time to write this. Today, it means a lot, far more than you realise. xx
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Do you have access to Skype? I think the basic service is free. I don’t know how it is in Scotland, but in the U.S., telemedicine is growing in popularity. The ability to talk to your doctor through video chat is being used by patients who live in rural areas and those who are housebound. I’ve never used it, but I assume it can be used by the people you want to talk to.
There has been some movement in the U.S. for what are called right-to-die laws, so there is now more information on the internet about this issue, like this:
Medicare is our health care insurance program for seniors and the disabled, and it has just agreed to cover end of life counseling. Just saying that there might be some information on the internet that may help.
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I do talk to my doctor on the phone, but skype type situation would be better. I will look into if not skyping my doctor, some of the people who I think might be able to help me and thank you for the link. It may lead me to something similar here in the UK.
Thank you again for those thoughts 🙂
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Oh Pamela i feel u have become v close and special friend and i want to say ive had al those deathy thots for yrs and no one has put a time limit on my life so im just wondering if u r depressed and anxious in a way uve not been usually and mayb never been before.U cd b alive and here long after the rest of us who u struggle to help every day!!! What helps me is my faith in God and hope of Eternal Life through Jesus Christ who lived and died for us.Do u have a Bible?If so read Psalm 23. “Tho i walk thro valley of shadow of death i wil fear no evil and live for ever and ever.” Of course to have this confidence we have to come to Jesus and ask for forgiveness for r sins and start to live as He will teach us to and pray to Him and read His Word. Im only writing this to let u know this is all i have to cling to as my fears and panic and anxiety is just like urs.I have lonstanding mentalhealth issues,osteoporosis,arthritis,fibromyalgia,underactive thyroid and murmur at my heart that has to b investigated but nothg lifethreatening at this stage that im aware of.Hope this is some help as ur shared posts have helped me a lot xx
I don’t fear what follows death, or death itself, it’s those last days or weeks. that leave me feeling lost. As I said, it’s just the way these new meds are making me feel, that brought it to the fore. I know that the clock may stand for nothing, but it’s something once your aware of, you can’t ignore, as I said, it’s always there in the background.
I have no fear of saying yes, I am a little low today, but that’s all. Don’t worry about me, I will as always find my way through, but like the clock, those questions don’t leave me for ever either.
Thank you for your kind words. Take care xx
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Dear Pamela, no, it is not too early to “bother’ them. As you say, the act of dying is a serious, often long drawn out and scary affair – and it obviously starts while we are still alive. And just as with other aspects of our life but even more so, we have to be able to discuss it with somebody experienced when we are ready to do so and feel the need. When pregnant, you would not wait to the last days before giving birth to prepare yourself either, would you? No, it is not too early.
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I don’t think it’s too early to “bother” them… Dying takes a long time. Technically, we all start the dying process once we’re born, it’s a lifelong thing. Personally, it scares me a ton. I think it’s great that you aren’t scared of death, I think that’s a good step towards the good death that you’d like. Death is so different for everyone, there may not be answers to your questions … as frustrating as that is. To me, dying a good death would be staying as true to myself as I could be in those last weeks. I wish I had answers for you. Good luck.
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I hope you do not mind me using your blog as the prompt for mine, I couldn’t get your blog out of my head all day yesterday and I felt I could write something about it to do it some justice. I love the skype idea and deathwithdignity (hadn’t heard of them) I think skype is a way for some of us to keep in touch during our lowest points and am going to suggest this to my support group for the weeks I cannot make it
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I didn’t mind at all, in fact, I was rather flattered. I too like the skype idea, but unfortunately, deathwithdignity is a purely American site, it is linked to the law change in some stares, where a doctor can prescribe and exit drug. I honestly don’t understand why it is constantly thrown out by UK government after government. Have these people no compassion?
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They certainly do not speak to or vote on behalf of their constituency not a single person I know agrees with them! I had to watch my grandfather wilt in front of our eyes as Alzheimer’s destroyed his ability to do anything. His body was a shadow of its former self and he had no dignity for the last 5 years and more. They won’t give compassion to humans yet they want to relax the laws on Fox hunting. Tells you all we need to know I think! Definitely love the Skype idea and going to see if I can get my support group up and running to do this.
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