CrohnsChat: update

update

Posted by chip on 6/5/2008, 12:49 am

First off can i apologise for not checking out the posts here. spending 5 and 3 hour shifts with mum while she's home and my bro is working and doing a shift and my dad is also doing a shift to cover 24 hours a day, thoug the marie curie nurses have also done the odd night shift. so i check in briefly when i can.
Have to say, and scuse me if i'm alone on this for anyone thats been through this, but the hospice staff for people "choosing to die at home" rather than IN the hospice have been crap. nothing nilch zero apart from v. experienced lady to advised on pain meds. Apparently if mum refuses to die in the hospice, (which she does) there is only ONE nurse for a huge city here in the south west of Bristol. There is a bed in the hospice if she wants and i know most folks don't have 24 hour carers available but WE HAVE and there is no support what so ever but marie curie all volunteers rather than paid hospice staff have been amazing.

MUM, stable BUT sleeps 20 hours a day and needs pain meds most of that, still got her sense of humour, though confused and slurring speech, even in between pain meds. Fully incontinent and bed ridden now, and yet only two weeks ago was hobbling round front room bossing us all around (affectionately - bless!!)
breathing very laboured (chains something or other breathing) and pumps on stand by for giving morphine by injections as no longer tolerating meds orally.. Four times a day care to change and wash her and twice/three times a day we have district nurses in and once so far hospice (so called) in the community nurse for advice on pain medds.
Still love her to bits and when she stroked my head yesterday and asked my aunt to make sure i was always ok, i had to leave the room, to hold back the tears. Got the Marie Curie cancer night nurse staff in tonight so my dad will sleep which means he can do the morning shift tomorrow so i get a bit of a rest till 12 noon. Been discussing funeral plans and what to do when "it's time" so dad is prepared. But in the mean time, enjoying each precious extra hour i get with my mum.
hugs
(exhausted) chip xx

Responses:

Re: update - Keith N (kan) 6/5/2008, 3:04 am
- Re: update - Sam 6/5/2008, 10:43 am
  - Re: update - Robbie 6/5/2008, 2:43 pm
Re: update - Liz 6/5/2008, 8:16 pm
Re: update - babs 6/5/2008, 11:03 pm
Re: update - Abby 7/5/2008, 9:10 pm

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