Sometimes the TV shoves things there, right in front of your eyes, which is just as frequently something you want to see, as it something we don’t want to. I doubt that many of you saw “Holby City” earlier this week, for those who don’t know, it’s one of those hospital dramas, where they show medical reality and the lives of those who work there. Although on one level it is just another soap opera, on the other, they show real life medical conditions in the most accurate way that they can. Right at the start of this week’s episode, the ED doctor said that patient had just arrived, with end stage MS. Inside me, there was this amazing conflict, the one that said don’t watch, versed the one that said, I have to see. Just to make things worse, the patient was a woman, not much older than me, who had been diagnosed about 5 years earlier than I was.
In those first few minutes of the show, I found myself feeling so many emotions and so much empathy for someone who didn’t even exist. What they showed was exactly what I knew in my heart, before I even saw her. She was unable to move or to talk, unable to do anything for herself, other than lie there and be cared for. She had gone through the stoma and suprapubic catheter stages and now, all her major organs were closing down slowly. I realised for the first time, why I didn’t fall to pieces when the doctors told me that the most likely end I would have, would be respiratory failure. The idea that my lungs were simply going to be unable to take in air, because my MS, is slowly closing down the mechanism that makes them work, sounded like a quick and painless way to go, I’d sufficate suddenly. It would be over in minutes, rather than lingering for weeks, months or even years.
The story was really about her husbands and her choices over their death plan, they had chosen cryogenics, which meant that they had to freeze her the moment before she died, not my personal choice, and not really the point of what the show made me think about. Of all the things I have thought about, a death plan really hadn’t figured anyway along the line. Yes, an after death plan, but not what happens immediately before. Until the doctors predicted my end, I did have in my head ideas of what I wanted, but they all vanished, which was incredibly stupid. So OK, they might have their ideas of what will happen, and a rough idea from the speed things are progressing , but it’s only their ideas, their prognosis, but they could be wrong, and who’s to say that I will be fit to that last second.
Whether we already have been handed that ticking clock or we believe ourselves to be fit and healthy, there isn’t one of us, who hasn’t thought about our end. When you have been handed that clock, from your original diagnosis or as time passes, we all find ourselves trying to picture just how it will be. Not one of us, picture the reality, we picture the glossy version, the one where we are with those we love and we silently just slip away, after having spent a great day doing whatever it is that makes us happy. The TV shoved right there in front of me, a picture that I had dismissed, but the truth is, it could still be my reality. Her heart stopped, my lungs will stop, not much of a difference really, and it woke me up, out of my glossy version. About a year ago, I toyed with the idea of finding out about hospices and the other option I had considered, palliative care at home, but I did nothing. Back then, it was a much more about finding out what they could do, not so much about my dying, if that makes sense. I had made this plan that I wanted to carry out in a precise order. I had to find out about, plan and pay for my funeral, before, I looked into what happened before. Then was a huge obstacle appeared, as in who owned the grave plot my son is in, and where I want half my ashes to go. That obstacle has been resolved for months, I now officially own it, but I haven’t moved past that point.
Sometimes, we create obstacles in our minds, I didn’t want to think about my end in detail, that would make it even more real than it is at this second. When the real obstacle appeared, it allowed me to stop and I haven’t started it again, not because I don’t have the money, but because I don’t want to make it real. Funerals, they happen after you’re gone, the dying bit, that is the bit we have to do and none of us, no matter how accepting we are, really want to go there. Reality says we can’t avoid it, and maybe, just maybe, if we get to know the details, if we do make our death plans, then we can move on with everything else that this life keeps throwing at us. I think it’s time that I got that plan from months ago on the move again. It’s time to contact the funeral directors, get all the documentation in place and pay for it, then I can speak to my district nurses about the bit before. I already have my DNR, now it’s time to make those death plans, one that covers all the options and possibilities. I don’t know what it will hold, or how it will look, but I have to think about it now, before, it’s too late. Then I can put it away and just live until it’s needed.
Please read my blog from 2 years ago today – 30/09/2014 – Getting angry
Two Rooms Plus Utilities 
Sounds like a plan. I confess I’ve not heard of your show but I do like Grey’s Bits(Anatomy) which is American and they love to mention AVM’s. And I enjoy the show 24 hours in emergency which is based at Kings College in London. There is always some old bloke who fell out of a tree or off a ladder and has an ABI. Often I get grumpy when someone has WPW & there is no follow-up Thankfully it’s early for me to be considering end of days. I know I want to donate everything, preferably to people needing organs, skin, etc rather than science. Science can have my brain once I’m done with it. It’s good your thinking of it, plan it put it aside then enjoy the rest of life and make the most of it.
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I’m in the midst of watching Grey’s right now, it’s a box set on Sky and I’m in the middle of series 3, so a long way to go. Most programs mention our conditions, some show a snapshot, but show the end. I bet it made many think, if they could see past the choice on screen. To many don’t even realise we have choices, there are so many different endings and we do have a choice, unless we’re in a nasty accident.
Somewhere inside, I have a need to organise it and know and there is only one way I can do that, by planning. But I still have to make that first step, clearing the funeral plans, something else we should all think about. 😊
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The Natural Death Handbook is a darn useful reference book and includes an Advance Directive…a Living Will form. Not morbid. A means to ensure your loved ones can challenge anything they know you wouldn’t want if you could speak for yourself. I was 20 when I first noticed something not quite right with my knee. It was autoimmune arthritis, and now I’m 53 and unable to get out myself, without help. But I found a whole new work direction I could do nonetheless. Some powers and capabilities may increase as others fail. I am so sorry for your suffering but as you so truly say, illness is an event, not a defeat. This is a wonderful blog and I hope it brings something your way that will ease and help you, as you enlighten and educate others.
http://www.naturaldeath.org.uk/
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I will take a closer look at the site, but my funeral is the one thing that do have completely sorted, right down the firm to carry it out. The area that I need to look at more closely is my care and what I want, directly before. I have so far just given the site a quick look and will look at it in closer detail later.
Thank you for this 😊
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Thank you for commenting. Yes, you’ll find this book covers much more than funerals. All the best to you.
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Thanks for bringing up an important topic that we really have so much silence around. It made me think about the dementia that seems to run in my family. My husband works at the Alzheimer Society and one of the topics they work to raise awareness about is the importance of making these decisions ahead of time, as your post emphasized. From power of attorney, to treatment plans, wills, DNRs, etc. It’s a painful topic but without these plans in place the surviving family members often suffer. Arguments over ‘what Mom would really want’ and those types of challenges are all too common. There are also many more options that people aren’t aware of for compassionate end of life care. The work that some organizations do is really moving and offers greater peace to the individuals and their families. I have so much respect for the health care providers and chaplains and volunteers that provide this critical care.
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You hit the head on the nail, my whole idea of sorting everything in advance, has always been to make it all as easy as possible for my husband. He doesn’t always quite see that, but I hope he will as time goes on. I want to put together everything in one file, so that all he has to do, is go the appropriate section and all the answers are there in waiting for him. No doubt, no thought needed, it’s just there for him. Healthy or ill, we all really should do this, as none of us know what tomorrow will hold. ❤
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This is true tomorrow we do not know what will hold. Maybe we do more than most. As my friend said”they leave you on top” as humerus as it is. When I see things like you have on TV it is not you it’s TV entertainment?
I feel we have enough on our plate the ending we do not know exactly.
Don t get too worried or whatever, I don t think your loved one will be worrying ….they want to LOVE YOU now.
It is something we all have to think about but their is no order in place as to when as sadly you know.Much love and Love now. please no over working move forward now as you are to get the times of peace. Oh I have to say I d like things in place like you but one I can t do it (only where I want to go) which suits me. Our local hospice do day care but it’s not for every one but I went and had some reflexology etc and a day out. So I ve been and seen wonderful place.
Please no over working and yes I do it but somewhere we have to stop…..Any way lots of love to you and Adam…😃
I do admire your bravery on topics x
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Dam, mistake a gain big error…they WON’T leave you on top.
All best x
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Dam, mistake a gain big error…they WON’T leave you on top.
All best x
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We all approach these things in our own way. To me, know what is going to happen and what is available does matter. When I managed to get Adam to talk about my funeral a few months ago, we had totally different ideas of what should happen. He now knows my wishes, but I want to take all the work out of it for him. We really do need to talk to our loved ones about all of it, even those who think they know everything about you, can actually get it totally wrong. 😌
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Yes, so so true, if possible. X x x
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Your honest, matter-of-fact writing just brought tears to my eyes. Massive respect to you for such a taboo-busting topic and for your bravery. I know that sounds trite, sorry. You write so well about this and I just wanted to say that.
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Thank you but I didn’t mean to make anyone cry 💞
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It was that ‘good’ crying, like when there’s an encore at the theatre or loads of cheering at a parade (or is that just me). Anyway not the bad sort.
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I watched the episode of Holby too. I have already been critically ill and very near death from septic shock which came on so quickly there was no time for an end of life plan. I had never discussed anything with my family but my daughters were faced with making plans because we were living abroad and they knew I’d want to be brought home. Since I somehow managed to come through we have talked about things and begun planning we are back in the UK for a start. But what I have still not thought about despite that experience is what happens just before the end. I’m certainly thinking about it now! I have PPMS which came on when I was 48. I am now 62. It never occurred to me that I might end up like the patient in the programme, and it actually shocked me! That shows how little I’ve thought about it. Reading what you wrote made me realise that, painful as it is it’s a conversation that we must have. Best wishes
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It is hard and Adam fought me all the way when I first tried to talk about it, but we got there. I was patient and I tried every now and then, often due to a TV program we watched together. Eventually, he realised it was something I needed to talk about. It was painful and there were tears on both side, but I told him what I wanted when I died, I wrote it all in here several months ago and we have slowly stepped through all the details. Now it’s time to think about my death plan. I doubt it will be any easier than my funeral plans. First I have to do my homework, then we can and will talk, but then, then it will be put away until it is needed.
I found great peace of mind working through my funeral, I just hope this next step, has the same effect. Stay strong, you will get through it and once sorted out, with options, because as you already know, things never quite happen the way we expect. 💞
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Admire the way you’re tackiling probably the last great taboo. I’m constantly amazed how people with life limiting conditions handle their situation with dignity – not sure how I would deal with it if I were in your shoes.
Stay brave.
Respect.
🙂
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None of us know, but if chronic illness has taught me one thing, it’s we all have far more strength, than we ever thought we had. ☺
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I really admire your strength and honesty on such a scary and not often talked about subject. Good luck with your plans xxx
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Thank you 😊
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