I thought I’d just write down my rather muddled thoughts on “what if and when and how..” I’m not really doing a turn-around from our discussions about the possibility of London, it was just kite-flying really, and now each time I try to visualize how the end is going to unfold I find I can’t! And I find it actually very difficult to imagine at what point we would pack up and go to London and what we’d do once we’re there.
It all boils down to: will I linger or will the end be quite fast? And who can possibly tell that! Will it go on slowly ravaging my abdominal area, so that I become incontinent and need constant care you can’t give me, or will it hop to somewhere else and then be quite quick. Like Dominique’s Mum, or Rudi, for eg, who was only in hospital for a week or so and in no pain? I suppose at some point in the not too distant future Neethling will finally say there’s nothing more he can do. What is Neethling’s role at that point? Does he see me to the end or does my GP (i.e. Andy) take over?
The fact remains that we’re probably out of range of easy help at home. It will be difficult to put me at the end of a morphine drip, where I/we can control the input, because we can’t get someone out here the two or three times a day it would be necessary.
SO: First step, we must really investigate that and talk to Mary Lebotchy and see what we can possibly expect.
Second: There is also Andy Thompson. We should talk to him and ask him what suggestions he has. Could something be organized from Ngodwana? I have a feeling they might, between the two of them, provide quite a bit of back-up.
(But I don’t for one moment think they’ll be helpful in helping me die more quickly)
If we find that there is no way we can get proper help in the final stages here, could I then be transported to a hospice in JHB? Should we investigate that already?
If I get to the stage where I am becoming incontinent and not able to control bladder/bowels, then I must do it myself right at the start. (and I say “I” because you must not be seen to be assisting me in any way). They might try to put me on dialysis, or insert colostomy/bladder bags, who knows, I have to resist that. (Though I don’t think Neethling will want to go that way, actually). But we must investigate on the internet how to go with morphine – or use normison. Danger is I must not botch it so that I’m in a coma or whatever instead. I don’t want to have to do this anywhere near the families. Here, peacefully with you, early on in the whole business.
The possibility of London: the terrible difficulty of deciding exactly WHEN. When I get what kind of symptoms? When Neethling says there’s no more to be done, it’s just a question of time? But then it could still be ages. Certainly would not go there when it’s bowel/bladder disfuntion. I’m not in any system in UK – and if we ask the kids now to ask Jo how it could all be done, then we’re already laying a big burden of stress on them, when we don’t even know when it will all happen.
When it does start happening: I don’t want to linger in the kids’ house, it would be horrible for them but it would be crazy trying to find somewhere else to stay in London, the kids would never let us – and we’d have to do all sorts of bureaucratic things before I could get into the system, I don’t have a doctor there etc etc. I try to visualize it and I can see more of a hassle than anything else. It would be sad and grey for us all. We must somehow make do with what we’ve got here. When I spoke about moving to London, I was exploring an idea, I’ve pondered on it and I just don’t see it.
We can if you like talk to Andy and Chris about it when they come next week – but I think it would make them feel frightfully anxious and involve them too much in the whole sad business. I wouldn’t want them to know that help is possibly not easily getattable towards the end, it would worry them horribly.
I think we have to wait until Neethling says there’s no more to be done. There will be more definite symptoms by then and we will probably have an idea of how it will develop. And by then we will know whether we can get help here with Andy Thompson plus the hospice help. Or move from here to a JHB hospice. Or go my own route, if I have the courage. Sometimes I feel I will – sometimes not…But yes, love, always together.
This was written before Mom's last trip to see us a couple of months before she died.
It all boils down to: will I linger or will the end be quite fast? And who can possibly tell that! Will it go on slowly ravaging my abdominal area, so that I become incontinent and need constant care you can’t give me, or will it hop to somewhere else and then be quite quick. Like Dominique’s Mum, or Rudi, for eg, who was only in hospital for a week or so and in no pain? I suppose at some point in the not too distant future Neethling will finally say there’s nothing more he can do. What is Neethling’s role at that point? Does he see me to the end or does my GP (i.e. Andy) take over?
The fact remains that we’re probably out of range of easy help at home. It will be difficult to put me at the end of a morphine drip, where I/we can control the input, because we can’t get someone out here the two or three times a day it would be necessary.
SO: First step, we must really investigate that and talk to Mary Lebotchy and see what we can possibly expect.
Second: There is also Andy Thompson. We should talk to him and ask him what suggestions he has. Could something be organized from Ngodwana? I have a feeling they might, between the two of them, provide quite a bit of back-up.
(But I don’t for one moment think they’ll be helpful in helping me die more quickly)
If we find that there is no way we can get proper help in the final stages here, could I then be transported to a hospice in JHB? Should we investigate that already?
If I get to the stage where I am becoming incontinent and not able to control bladder/bowels, then I must do it myself right at the start. (and I say “I” because you must not be seen to be assisting me in any way). They might try to put me on dialysis, or insert colostomy/bladder bags, who knows, I have to resist that. (Though I don’t think Neethling will want to go that way, actually). But we must investigate on the internet how to go with morphine – or use normison. Danger is I must not botch it so that I’m in a coma or whatever instead. I don’t want to have to do this anywhere near the families. Here, peacefully with you, early on in the whole business.
The possibility of London: the terrible difficulty of deciding exactly WHEN. When I get what kind of symptoms? When Neethling says there’s no more to be done, it’s just a question of time? But then it could still be ages. Certainly would not go there when it’s bowel/bladder disfuntion. I’m not in any system in UK – and if we ask the kids now to ask Jo how it could all be done, then we’re already laying a big burden of stress on them, when we don’t even know when it will all happen.
When it does start happening: I don’t want to linger in the kids’ house, it would be horrible for them but it would be crazy trying to find somewhere else to stay in London, the kids would never let us – and we’d have to do all sorts of bureaucratic things before I could get into the system, I don’t have a doctor there etc etc. I try to visualize it and I can see more of a hassle than anything else. It would be sad and grey for us all. We must somehow make do with what we’ve got here. When I spoke about moving to London, I was exploring an idea, I’ve pondered on it and I just don’t see it.
We can if you like talk to Andy and Chris about it when they come next week – but I think it would make them feel frightfully anxious and involve them too much in the whole sad business. I wouldn’t want them to know that help is possibly not easily getattable towards the end, it would worry them horribly.
I think we have to wait until Neethling says there’s no more to be done. There will be more definite symptoms by then and we will probably have an idea of how it will develop. And by then we will know whether we can get help here with Andy Thompson plus the hospice help. Or move from here to a JHB hospice. Or go my own route, if I have the courage. Sometimes I feel I will – sometimes not…But yes, love, always together.
This was written before Mom's last trip to see us a couple of months before she died.
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