I'm so angry I could cry....

Discussion in 'End of life care' started by Ionna, Jun 19, 2015.

  1. Ionna

    Ionna Registered User

    Jan 19, 2014
    35
    Surrey
    :mad: :mad: :mad: :(

    As if the week hasn't been challenging enough - I now have my mother's carers secretly (though the one carer said it to my face about an hour ago) thinking I'm deliberately not feeding my mother. Basically starving her. This opinion has been formed because I've asked them not to force feed mom, to let her sleep/rest if that's what she wants to do...They think that mom eating 2 bowls of soup and drinking half a litre of water in one sitting is going to make everything alright.
    Talking to them, telling them, having a grown up conversation explaining why (for example) they shouldn't be trying to shove a cup of water under mom's nose and hold it there until she swallows doesn't seem to be having any impact. They think I've just given up on my mom. I'm so upset!
    From everything I have been told by Palliative + District nurses, GP even through the wonderful people here at Talking Point sharing your experiences, my mother not wanting to eat and sleeping alot is not uncommon at this stage (though mom did buck the trend and stay awake for HOURS!!! on Wednesday). Allowing her to do either is something that I should not be criticised for.
    I think I'm beyond angry...
    If I could take care of my mother alone I wouldn't have them back in the house ever. They are very ignorant and disrespectful.
    I have asked before, but if anyone knows of a more professional outfit that have experience of dealing with someone in mom's stage of life please, please let me know. I'm based in SE England.
    Sorry for ranting...didn't know what else to do...I just had to let it out.
     
  2. Essie

    Essie Registered User

    Feb 11, 2015
    563
    I'm sorry you're having to go through such a frustrating thing at what must be a very difficult time for you and your Mum.

    It doesn't sound like the carers have a great deal of understanding of late stage/palliative care - they may indeed have had no training in that at all - you could ring their agency and explain Mum has a specific need for this sort of care not just general care and ask do they have any staff with that training that could be assigned to Mum in place of the ones she has now?

    Do you have an Admiral nurse coming in at all? If you do could he/she liaise with the carers and formulate a care plan that has to be adhered to, or could Mum's GP draw up something?

    Wishing you luck and your Mum peacefulness.
     
  3. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,525
    North East England
    Goodness, Ionna, it sounds like you need to get rid of these carers and get some others that are on the same wavelength as yourself. Much easier said than done, though, I know. Could you report them to their superiors for making such horrible allegations about you?

    Please forgive me if this is the wrong thing to suggest, because I'm not fully aware of your situation, but is your mum at the stage of life where a hospice would be appropriate?

    I'm so sorry you have this to deal with on top of everything else. Big hugs x
     
  4. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,962
    Brixham Devon
    I'm against 'bullying'/ forcing/ food and drink down someone whether they have dementia or not. It's not caring in the slightest. Nothing to suggest I'm afraid but sending you my support.

    Love

    Lyn T XX

    p.s. always be aware you know your Mum best:)
     
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,948
    Female
    Dundee
    If you have the strength I think you should phone the care company. Ask if they have carers who are familiar with palliative care or if they can speak to the carers you have about it.

    You really don't need this. Take care.
     
  6. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    ionna, this sounds awful :mad: You and your mum should feel supported by carers, not the reverse. It really sounds as though you need different carers, or a different agency.

    I think it's so important for carers and families to work together....you could make a whole file out of the notes I leave for mum's carers, anything from 'mum's favourite jelly is on top shelf of fridge' to 'new meds added, not in dossett box, I have left medicines admin form for completion, started it myself today' to 'new kylie sheets in linen chest'. You get the picture! They never write / phone back directly, nor does their office, but at least I know I've done my bit.....and they do act on the notes.

    Wish I lived near you and could suggest another agency. As someone said, it may be a good idea to contact Admiral nurses, or your local adult social care team.....Or address the issue with the agency you have.

    Good luck :)

    Lindy x
     
  7. Ionna

    Ionna Registered User

    Jan 19, 2014
    35
    Surrey
    Good morning,
    Much calmer now I'm pleased to say. After posting my last comment I emailed the CHCC to ask if they could contact me after the weekend so I can let them know what happened. I also spoke to the Family Support officer at the Hospice that oversees moms care in the community (the Hospice have made a note on mom's file that when the time comes I would be happy for her to move there, but I'm told that it still may not be possible if there are no beds...equally, I don't mind if she stays with me - at least I can try to keep an eye on things).
    Having exhaled I did feel better so I called the agency and spoke to the manager who said that she would contact both carers to make sure they understand mom's needs at this time. I did think about asking for another carer, but I really do just want them out of mine and moms life.

    The same carer did come back this morning and did not mention anything so not sure if her manager was able to talk to her. They are as thick as thieves so it is possible that they've had a little chat.
    Still on the hunt for a new agency as I have had so many issues with this one. I did look at Admiral Nurses, but I'm not sure what they do so didn't want to bother them...just logged to their website now so will take a closer look and call them on Monday morning.

    I just need to get through the weekend and use the time to come up with a plan.

    Thanks a million, you've been so lovely, kind and supportive:)

    xxx
     
  8. Sasky

    Sasky Registered User

    Jan 29, 2014
    103
    Ashford, Kent
    You don't say where in the SE you live as the type of support you can get will vary from the county councils. If you live in the Kent county council area then I may be able to help
     
  9. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,051
    GLASGOW
    Keep the hospice as an option for the future. Its a place of calm and love. I would not hesitate when the time comes.

    Keep fighting! You are doing an amazing job.
    Love Quilty
     

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