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I'm getting all these nurses a gift voucher for Christmas, and I will be increasing my donation to Marie Curie by quite some margin. I've been giving for years anyway but honestly... we got the (much needed!!) equipment so fast and when you see a nurse coming to the door when you need help, it's such a relief. They deserve every penny, yet I think they're half-NHS, half-donation funded (I may have that wrong). This isn't some drive to bang in donations for Marie Curie (!!), I'm just saying that I'm personally going to be doing this. Obviously they are for general end-of-life care (oops, sorry.. it's for terminally ill care) and not just for cancers, so I might end up using them for myself - who knows.
So yes - this was "good." Unfortunately it wasn't until they were lifting her in the bright light of the living room that I noticed her deterioration some more. And she only had 4 tea-spoons worth of steak pie and chips, followed by 3 teapoons of ice cream.. for dinner and dessert. She is desperate to see my birthday on Friday. I just hope she is ok for Monday when we really have to make the decision on home vs hospice.
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I know you want to do the best for her, and to honour her wishes and all that, but I can tell you, you don't actually know what you're putting yourself through till it stops and you can look around. We now have a care package where two carers come in four times a day to get my wife dressed, help her to the toilet and put her to bed. I do everything else, but it was only when I was working, bizarrely, that I realised just how much I'd been doing for her and what it was taking out of me.
I am now so much less tired and, yes, cranky than before. I'm also in better spirits than I was because so much of the pressure has been taken off my shoulders.
I'm in no position to comment on the emotions you're going through, nor those of your family and hers, so I won't, but I can say that physically and mentally you're draining yourself dry. I know you are, I've been there and I can see the signs in you, too.
You really need the help. It will be so much better for her, too.
I apologise if you think I'm coming on too strong, and I'm sorry for any offence, just trying to offer some practical advice.
The nurse obviously wants to place Sheena's needs first - it's her right to die where she wants, though is she thinking right when she says she's not so sure now... whereas before she said hospice is ok...
Monday is D-day. I'm going to tell the nurse I'd prefer hospice, while she's still ok to be transported... because right now she's in a lot of pain rolling onto her left side and I can see it will hurt to get transported there.
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I'd be inclined to agree with Dennis, and hope that everything works out for the best.
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https://www.facebook.com/benswanwickguitar
Hopefully it helps a little, knowing you have a heck of a lot of support here, and I (all of us I am sure) hope that posting here gives you at least a tiny outlet for a few moments.
J
Right - district nurses were in and asked Sheena again about hospice vs home and she said hospice... so we're kicking it off. It might not even happen (bed availability etc) and maybe they'll see her and think she is only a day case just now - who knows. And she can always change her mind. But at least it's in the pipeline. I'm waiting on a call today.
I was the one who suggested we go visit one, I don't want to feel I have steered her away from intended place of passing. I hope she's not just thinking about the girls and I with this decision, though I guess that makes her part of who she is. In any case, I'm glad that the ball is rolling - and let's see if we get a place or not. Until then it's more of the same, but I'll pack bags with her favourite things, the wedding album, lots of clothes. I'll be staying over with her every second of the day.
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There is also a big disconnect between the concept of passing away peacefully at home surrounded by loved ones, and the harsher reality of the situation when it is something like aggressive painful cancer you are dealing with.
You aren’t equipped to deal with the day to day management and what happens if there is a crises and you can’t get hold of a nurse?
You are doing the right thing, don’t worry about it
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-> If she does get a bed, it's in a shared ward initially..
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I know how tough it can be both on the sick, and on the care-givers. You are doing the right thing in getting your other half into a hospice. Hopefully, Social Services would step in and offer assistance. You cannot handle this at home.
It is probably difficult to arrange a few days respite, because you would want to be present at all times possible. It is easy to get stressed out at home trying to cope when no one else is around, Hopefully you have a close-knit family network around to take some of the pressure off you.
At times like this it is difficult to find the right words to say that have not already been said.
Do look after yourself, also.
She said that one of the most difficult things was that people stopped talking to her because they didn't know what to say.
I've no idea what to say. I can't imagine what you're dealing with or how you're feeling. But there's no way that I'm going to stop replying to you here.
You, sir, are an incredible person.
Really glad I pressured him to come up from England.
She went downhill really fast and he was due to come up in a couple of days but I phoned him and said ‘now’
Hope things stay peaceful mate