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Old 07-09-15, 09:25 PM   #41
v wright
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Default Re: Peg feed

Hi Trish and Crystal
Thanks for sharing this feedback.It's invaluable. Hoping J settles and we will be in a position to visit sometime. XX
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Old 08-09-15, 10:29 AM   #42
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Default Re: Peg feed

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Hi Trish and Crystal
Thanks for sharing this feedback.It's invaluable. Hoping J settles and we will be in a position to visit sometime. XX
I very much hope that you will be able to visit Park House too. I know this thread was/is discussing PEG; (and not necessarily Respite), but whilst we were staying at Park House last year, there was a lovely couple there - wife in later stages of HD - she had had a PEG fitted and they had visited Park House frequently. Her husband was able to have a welcome break from caring and they were there together which was very important. As Trish says, funding may be available via a Direct Payment (as I know it was in their case) for Respite, as a couple to visit, but with the payment going of course to 'J'. As Trish also stated - it can be a long process to get the 'powers that be' to think 'outside of the box' when it comes to 'traditional' short-term respite options - nursing/residential etc.
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Old 09-09-15, 09:17 AM   #43
Trish
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Thank you Trish. We had Room 25 on our last visit! Previously our room had been 15 (on two occasions) and when Park House offered us a different room I thought it may not be a good idea!? We all know what change can do!! All was fine and the view wonderful! such a 'special' place. You (and others) have inspired me and I was so sorry for your loss (and others too). Have 'the book' and also other publications that were recommended - been there, done that, but yet to get the 'T Shirt'!

I reckon you have the T Shirt already. Just a case of needing to take it out of the drawer at times when an extra layer is required

I got myself a mug printed the other day. It says on the front

'I'm Trish. I've been through the mill'

On the other side of the mug it says

'but I came out Well Grounded'.

Talking of mugs....

In my job before my current one I was in a construction company . I was in the Tea Point and there was a spare mug on the side.

I was allowed to take it home as it made me cry.

It was made by the kitchen makers Howdens for a special event at Park House where they supplied the kitchen. Picture of Park House on the front. In all our times at Park House (6 in total) we could never find a PH mug (only ones with cats and dogs lol) and it felt like this mug had been waiting for me. What were the chances of that eh? Funding a Park House mug on the side of the sink in the middle of a company in Eltham in London?
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Old 09-09-15, 09:26 AM   #44
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Default Re: Peg feed

Hi V

I think I saw in your other thread the peg was being fitted yesterday?

I hope it went ok.

I remember being shown my mother's stoma area after her operation and I was very nervous at first when they pulled up her cover/nightie but it's amazing how the pragmatic side can take over our emotions and fears.
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Old 09-09-15, 11:12 AM   #45
Crystal
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Hi V

I think I saw in your other thread the peg was being fitted yesterday?

I hope it went ok.

I remember being shown my mother's stoma area after her operation and I was very nervous at first when they pulled up her cover/nightie but it's amazing how the pragmatic side can take over our emotions and fears.


Hi Trish - re 'the mug' - that was just meant to be! I don't believe in anything happening by chance/coincidence!

Hi 'V' - I too hope all went o.k. with the 'PEG' being fitted? I have to admit to having so many reservations about this. Hope you don't mind my admitting to that - but I need to keep an open mind and listen to the experience of others who have gone down this route, as I know it will be 'looming' for us at some point in the future.

Crystal
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Old 09-09-15, 04:15 PM   #46
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Default Re: Peg feed

Hi Everyone ...

Trish I love your new mug - very funny but the Park House one...that's gotta be a "sign", just so spooky but in a nice way. I have to say the possibility of ever facing a PEG situation fills me with fear because I know it is something that Hubs does not want...but as he worsens (if he lives that long/something else doesn't strike him down) who knows. I just don't want it to be something that I have to decide on, because I would go against his current wishes and say yes.
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Old 09-09-15, 06:55 PM   #47
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Hi Trish - re 'the mug' - that was just meant to be! I don't believe in anything happening by chance/coincidence!

Hi 'V' - I too hope all went o.k. with the 'PEG' being fitted? I have to admit to having so many reservations about this. Hope you don't mind my admitting to that - but I need to keep an open mind and listen to the experience of others who have gone down this route, as I know it will be 'looming' for us at some point in the future.

Crystal
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Hi Everyone ...

Trish I love your new mug - very funny but the Park House one...that's gotta be a "sign", just so spooky but in a nice way. I have to say the possibility of ever facing a PEG situation fills me with fear because I know it is something that Hubs does not want...but as he worsens (if he lives that long/something else doesn't strike him down) who knows. I just don't want it to be something that I have to decide on, because I would go against his current wishes and say yes.
Yep

Totally Spooky but in a wonderful way. Far too many spooky things happened to me before I met hubby, during our time together, and after his death to be able to write off as pure coincidence. I do take comfort in thinking we are still tuned into the same radio wavelengths as it were

For those who have read my book , I put in Ricky's Story which was from Myrna's speech as that was a bit of an eye opener to me and helped me focus on the 'cons' of peg more than the 'pros'. That said, Steve had never read that speech or ever seen any of the messy board or other tales of pegs so his saying no to peg much earlier on was always based on not wanting to prolong his life.

In saying the above, there was so little out there to see/read by way of positive experience of peg until very recently. The peg book I gave a link to in this thread seems to provide a better understanding of what peg is although, as I say, I have not read it. I admit a part of that not reading is down to my not wanting to read it and thinking perhaps had we known...
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Old 10-09-15, 08:08 AM   #48
v wright
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Default Re: Peg feed

Hi everyone
J's PEG is in and all went well! He was sedated and they said he could have come home that evening but I asked if he could stay because I was nervous of the night time with J moving around so much. I went yesterday morning to collect him and they said he'd been restless during the night. They said it was probably because of dehydration. I tried to explain that it's HD and he's like this at home but as usual no one know what HD really was. The carer had been to get J up and dressed but they could get him to move. When I arrived all I could do was sit there and wait for him to wake up. When he eventually awoke he was calm and still. I was instructed by the PEG nurse on how to care and administer the feed which is very simple. The PEG it's self is very small and clean and didn't make me squeamish at all. They have tape the tube to horizontally across to J's stomach (at my request) because I was worried with all his writhing around at night and during the day. He was lying on his stomach yesterday and everything was ok. I was reassured that it's extremely difficult for it to be pulled out. So all in all I'm feeling much more positive about the whole thing! Now I know that J will be fully hydrated and his weight/nutrition/meds will be at their optimum. J can also eat on good days. Fluids are the worst at the moment so they will all go via the PEG.
A couple of nurses were really understanding about J's condition and could clearly see that I was/am tired. They allowed J's to stay last night as well so that I could catch up on sleep and they also called social services explaining I need more help during the night. I'll call today too…can't function at the moment with J's sleep patterns and behaviour at night. I'm walking about like a zombie. How does everyone manage?
Anyway back to the PEG. I'll be collecting J this morning and the PEG nurse will be coming home over the next few days to make all is well. I'll up date later on. Thank you everyone for your support. X
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Old 10-09-15, 11:40 AM   #49
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Default Re: Peg feed

Hi V...

So glad to hear that J seems fine and that your fears over the Peg have been somewhat allayed...and it's also good to hear you have managed to catch up on some sleep and are feeling more positive...and that you are not simply being left to it but that a nurse will be calling round for a few days to help/assist/advise. Should it ever come to this this end....your experiences are invaluable and I'm sure we all thank you for sharing. I guess it's the that fear of the unexpected/what you don't know but once it's there in front of you you just get on with it and realise it ain't so bad or hard....Early days I know but, hope all goes well and most of all that J benefits from it. x
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Old 10-09-15, 02:18 PM   #50
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Hi V...

So glad to hear that J seems fine and that your fears over the Peg have been somewhat allayed...and it's also good to hear you have managed to catch up on some sleep and are feeling more positive...and that you are not simply being left to it but that a nurse will be calling round for a few days to help/assist/advise. Should it ever come to this this end....your experiences are invaluable and I'm sure we all thank you for sharing. I guess it's the that fear of the unexpected/what you don't know but once it's there in front of you you just get on with it and realise it ain't so bad or hard....Early days I know but, hope all goes well and most of all that J benefits from it. x

Glad all went well with 'PEG' being fitted. Early days, but hoping that 'J' is now settled and comfy at home now and you are hopefully a little bit more rested for the time being at least. I do hope the extra support you need will be put in place very soon!
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