End Of Life Care

[237SJ]

What do you do when you are looking after someone who is getting weaker by the day and you have had no support whatsoever - who do you call? I always imagined that there would be someone (health professionals, etc) who would take charge and advise but that hasn't happened.

[anneasquith]

would you wish to have mum admitted to hospital ?

[pixie373]

Please don't. Unless you know that is very definitely her wish. It hardly ever is... X

[237SJ]

I nearly called 111 the other night because I didn't know what to do but she begged me not to and pleaded to be able to sleep in her own bed (I think she was scared that she would be sent to hospital) The trouble is, it is clear she can't live in that house on her own. Ideally a live-in carer would be good but I would imagine that would cost a fortune. As we have no idea how long she's got, I dont know how long we will be able to continue as we are with my sister covering for me. My employers can't be relied upon to give me unpaid leave for a while either.

[pixie373]

I would look for some carers then. Get your sister to ask people locally for ones that are good. She might be able to get financial help for 24 hour care if she needs it- or free. It sounds like the only option if she wants to stay at home.

[pixie373]

Can you say what county she is in? On the off-chance...?

[Mamyalynne]

A lot of this seems to hinge around a terminal diagnosis - my Husband got a MacMillan Nurse by his bedside within half an hour of being diagnosed terminal.

The wheels were set in motion and I took him home and we went from there - district nurses daily and visits from the MacMillan team and contact numbers for everyone.


It shouldn't have to take all that and I do hope you can get to speak to someone at the Surgery or Hospice on Monday.

[pixie373]

I think she's in a busy area, mamya. We usually get them for end-of-life care without a problem. The GP might put a word in.

[237SJ]

It's the UK pixie. I live around the corner but I'm away a lot with my job. My sister lives about 80 miles away. I have told her she needs carers but have been met with strong resistance - she doesnt want strangers in her house. She is also not open to going into a carehome. I have been emailing back and forth with my sister today and it sounds like she is making a bit of headway on that though. Thing is, if Mum's about to die then we could push for Macmillan, I could get signed off by the doctor (a manager at work told me to take the "unofficial" route to time off ) and it would all be sorted without any of that. We just don't know what's happening though

[237SJ]

Sorry mamya crossed posts. Yes it is terminal. My aunt has the same disease and has had Macmillan there from day one. Not so us. I have heard good things about Marie Curie - maybe I'll get more luck there.

[pixie373]

Sorry...county, not country, I meant. Has the doctor defined it as end-of-life care officially? I imagine she won't accept MacMillan, if she doesn't want strangers in, but if there's only the two of you, you're going to need some support. Is she eating anything? Swallowing medication?

[Mamyalynne]

I do hope so - busy area or not, my town has 140,000 population so not a village.


Please let us know how you get on.

[237SJ]

Sorry SW London. I thought it said country (I'm on my tablet and the print is small). I think she would be happy for medical people to go in but (no disrespect to anyone) a friend of my Dad had a daughter who was a carer and she was prosecuted for stealing money from clients and that kind of thing sticks in the mind of some old people and my mum is stubborn at the best of times.

[Ann]

So sorry to hear your sad news 237, wish I could suggest something to help but others on here are far more experienced than me. Just to say I am thinking of you all and pray you will be given strength to deal with this. My Mum died quite suddenly in May and although it was a huge sad shock and I'm still grieving, we were spared the experience of seeing her decline over time. God bless x

[237SJ]

Thank you Ann. I just want to go home now (going home tonight but have a delay) When I get there we will have to celebrate the last Mothers' Day. Thanks for all the replies x

[pixie373]

No problem. It might well be worth trying Marie curie then... I'm not sure what else to suggest, but good luck xx

[anneasquith]

only my opinion but if you can ' get away from work' you should. soon.

[DTCwordfan]

Anne, I agree with you - and the doctor should be leading, if not - then I think I would be having a long chat with your Macmillan's or Marie to cover how best to play the medical services into the action needed for terminal support.

[DTCwordfan]

not anne's doc! but rather your mum's, SJ.

[boxtops]

The Trinity Hospice is near to you, 237 - why don't you give them a ring and ask for advice? They can tell you how you get referred for help, this says you can ring them direct for advice: http://www.trinityhospice.org.uk/patient-family-care/referrals-contacts