1. Rheme

    Rheme Registered User

    Nov 23, 2013
    #1 Rheme, Oct 16, 2016
    Last edited: Oct 16, 2016
    Hi all,

    Have had a really tough week. Mum has been in a nursing home for nearly three years now and her physical and mental ability have declined rapidly during this period. I am the only family member she recognises as the rest of the family are just about invisibles (although during the last week they have all come out of the woodwork).

    On Monday afternoon last week I received a phone call from her gp stating only the nursing home staff are allowed to give mum food and fluids. As they during the last three years have struggled to maintain her food and fluid levels and when I have visited every day have put food and fluid into her to maintain a life sustaining level.

    The gp stated that as mum sleeps most of the time (not when I am there in early evening) then she doesn't have a quality of life. What does it matter if she sleeps most of the day (she is blind and immobile and there is no stimulation during the day from the nursing home). He also told me that mum would have between 2 days to two weeks before she dies.

    I have been off work all last week as this has been devastating to me and I have gone into the nursing home to clear her mouth of mucus before feeding (something the nursing home staff do not do) in the hope of her being able to take in food and fluids. I think this was quite cruel of the gp to inform me this way and should have invited me in to the surgery for a chat.

    I have found this very hard to take and admittedly mum has been very poorly during the last 4/5 weeks e.g. thrush, urine infections, chest infections, supra pubic infections she is a fighter and I feel that she is not being given a chance to recover.

    Her skin is beautiful as I massage her every day and give her a full facial with Clarins. They say she has the best skin in the building (it is better than mine).

    They are struggling to get food and fluids into mum and I feel that the longer this goes on then she will forget how to swallow due to the dementia. During the last week they have been less successful in feeding her and giving her fluids (it is as though they are aiding her demise). Whilst when I have fed mum and given her fluids I have cleared the mucus from her throat. The carers don't and when she baulks they abandon the feed/fluid intake (on nursing home instructions).

    I had a meeting with the matron who said the gp should not have told me that she would die within two weeks as no one knows but agreed that what is going in e.g food and fluids is not life sustaining.

    In my heart I hope mum gives up the fight quickly and goes to dad who died nearly three years ago so save her of any more suffering but she is and has been such a strong woman that I don't think she will.

    I have been given open access to mum and can sleep in her room when I want which is comforting.

    I have to return to work tomorrow (my employers have been brilliant) and feel this is where the real decline commences as all feeds are done when I am at work and I cannot clear her mouth of mucus before feeds.

    One day I may accept that what they have decided is right but at this moment in time am struggling to accept their decision.

    Thank you for reading this. I just need to get it off my chest as I feel so alone in this.

    I only want the best for mum but feel the way they have gone about this is insensitive.
  2. Kjn

    Kjn Registered User

    Jul 27, 2013
    I don't know what to say Rheme, I'm sure others will...

    I just wanted to offer a (((((big hugggg))))) xx
  3. Ellaroo

    Ellaroo Registered User

    Nov 16, 2015
    Your mother has been fortunate having such a caring daughter .
    My thoughts are with you x
  4. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Hi Rheme,

    I have just read your post and cannot believe how badly your GP has handled this, via a telephone call. Are nursing homes allowed to stop you feeding your mother? I am not sure how I would take this.

    My mother is 91 and refusing most food and fluids, she is on Ensure Compact, which takes us about 2 hours to get two small cartons down her, but like you, we do it and persevere. My mum has also had numerous recent urine and now a chest infection, but I don't think I would let them stop me whilst she is still attempting a swallow.

    I hope someone with more knowledge of this comes along as I too will be interested to know, as our time approaches this stage.

    I just want to give you a hug. Don't give up. xx
  5. Rheme

    Rheme Registered User

    Nov 23, 2013
    The nursing home can stop me feeding her or giving her fluids as it is on a GP directive.
  6. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    #6 BR_ANA, Oct 16, 2016
    Last edited: Oct 16, 2016
    Can you ask CH matron to feed your mum? Maybe you can ask her about cleaning mum's mouth before feeding.

    Editing. As Idk UK law, I am assuming that if GP told you to not feed, you won't.
  7. Rheme

    Rheme Registered User

    Nov 23, 2013
    I have not fed or given mum any fluids as I do not want to compromise my visitation rights to mum. One of my sisters however during her fouth visit to mum in three years was found by one of the carers giving mum unthickened fluids which caused her to start coughing. The carer told her that she should not be doing that (which she already knew). I informed the nursing home matron and a sign has now been put up in mum's room advising all visitors of the GP directive.

    I find it very hard when visiting her to see her struggling so but give her lots of hugs, kisses and cuddles - everyone needs them through tough times.

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