Devastating News

thomasross20

Sorry to keep bumping this... the Marie Curie nurses were just round. I already know the district nurses are great at helping with medical, the palliative care nurse is brilliant for advice and helping us throughout the process... and now.. the Marie Curie nurses are also such a lifeline... they cleaned Sheena up, changed the sheets, you name it. She was in some "necessary" pain (if that makes sense) in order to jiggle her around a little but this needed two people who know what they're doing. We have them until Monday, just after tea-time and in the morning each day. And there's the crisis care team for if she falls or needs other personal help. 

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.

TheOtherDennis

Thomas, you need to get her in a hospice. Clearly our situations are very different, but I have several years' experience in helping someone who cannot move, and you really, really need to get her in a hospice, not just for her but for you too.

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.

thomasross20

I agree, Dennis... hospice was always my first choice for her - better care!!
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. 

joneve

As always, All the best to you, Sheena and the girls mate. You literally blow my mind every time I read an update, whilst simultaneously breaking my heart. I really can't imagine what you're going through and have no idea how you're finding the strength. 

I'd be inclined to agree with Dennis, and hope that everything works out for the best. 

thomasross20

I just hope Monday isn't too late.. as they don't do weekend admissions.

Vibetronic

that definitely sounds like the right choice. Those nurses are fantastic. We had similar (I think Macmillan?) when Grandad was ill a few years ago. It'll make Sheena more comfortable and take some of the strain off you. This sort of thing is exhausting; I have some idea through seeing my dad look after mum, who's had MS for 40 years, and looking after her myself on a regular basis so he can get out of the house for a bit. That's nothing compared to what you're going through now, but just from that limited experience I think that any help you can get is a good thing, will take a bit of pressure off you, and will hopefully enable you to reserve that bit of extra strength for when you really need it. Sorry, bit waffly, but in essence I think you're 100% doing the right thing. (edit - pretty much what @TheOtherDennis said)

Snap

Hi Tom, thoughts with you all in the next few days.

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

thomasross20

Thanks!

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. 

sweepy

Hope it all goes as well as it possibly can, tbh the Hospice is the best option for all of you, fingers crossed that there is a bed available 

Cabicular

thomasross20 said:

Thanks!

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. 

She’s not thinking about any of that at the moment I think,
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

Jalapeno

What @Cabicular said - there'll be full time pain management, plus you and the girls can maybe get a bit more kip than recently. Hospice's are great places, very positive vibes. My buddy died of a brain tumour in one - it was a happy time amid the ultimate sadness - you just focus on the loved one - not all the other stuff.

thomasross20

You guys are right,I know it. No need available today but will hear back tomorrow.
-> If she does get a bed, it's in a shared ward initially..

strumjoughlamps

genuinely wish I was nearby so I could give you a hug and tell you in person how amazing you are.

Moominpapa

Wishing you good luck with the hospice bed - you deserve a little luck right now more than anyone I can think of.

thomasross20

I swear she is holding out for my birthday tomorrow, willing herself on. She has deteriorated more in the last 12 hours. The best present I can get right now is her into a hospice bed tomorrow. Everybody cross your fingers for us, please! It's been a very emotional day. 

Panama_Jack666

thomasross20 said:

I swear she is holding out for my birthday tomorrow, willing herself on. She has deteriorated more in the last 12 hours. The best present I can get right now is her into a hospice bed tomorrow. Everybody cross your fingers for us, please! It's been a very emotional day. 

My fingers are crossed! You're all in my thoughts mate. Wish there was more I could say or do, like many in this thread I suspect.

rocktron

@thomasross20: I deliberately stayed out of this thread because it brought back bad memories of similar experiences you are going through -  my mother gradually deteriorating from Alzheimers's.

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.   

TTony

A friend of my wife's died from Cancer a few years ago.

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.

Cabicular

thomasross20 said:

I swear she is holding out for my birthday tomorrow, willing herself on. She has deteriorated more in the last 12 hours. The best present I can get right now is her into a hospice bed tomorrow. Everybody cross your fingers for us, please! It's been a very emotional day. 

My wife hung on until her Brother arrived from down south and then died within half an hour of him arriving
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

Moe_Zambeek

My fingers are crossed for you both Thomas.