Seeking reassurance re feeding

Discussion in 'ARCHIVE FORUM: Support discussions' started by jeannette, Aug 8, 2006.

  1. jeannette

    jeannette Registered User

    Feb 27, 2006
    I've been posting in another thread for ten days or so about the effects of my mother's broken hip - not eating the most worrying, amongst others.
    Can people who've been through this please, please reassure me that they won't try to force feed her? This would be a total horror to her - added to which she signed a Living Will before she had dementia. We have no idea yet what's going to happen to her. There's talk of moving her to a rehab hospital, after which decisions will have to be made re going home or to a nursing home - but this is one facet that would make a difference to our decision making if it came to that. Does anyone know if nursing homes in the UK tend to stick to encouragement, kindness and fluids, or if they tube feed?
    Sorry for this grim appeal for info, but it would so put my mind at rest to know what other's experiences have been.
  2. Lila13

    Lila13 Registered User

    Feb 24, 2006
    I don't think the staff in the hospital where my mother died made any attempt to feed her or to notice what she was or wasn't eating or drinking.

    Ask the nurses and doctors and just hope they tell you the truth.

  3. Helena

    Helena Registered User

    May 24, 2006
    By all accounts in most hospitals the staff do not see it as their job nor do they have the time to force feed a patient

    ewlderly patients with dementia who have made a living will should have that honoured above all

    In fact it would really be more sensible if no one tried to cajole an elderly demented patient to eat etc ...........somewhere deep within them they know thats their way out of the hell
  4. storm

    storm Registered User

    Aug 10, 2004

    my mother in law died 3wks ago i had cared for her at our home 24/7 for 4yrs.Two months before she died she just stopped eating and later stopped drinking she would not even take fortisip, her docter agreed with us that it was kinder to leave her without invasieve feeding or fluids i just used a sponge to keep her mouth moist. Once i overcame the thoughts that i must feed her things became easier and she died peacefully at home in her own bed with me by her side.Our own gp told us many more docters are taking this route and i believe they are at last starting to realise people are able to gently and comfortably die with dignity, she was also put on morphine patches which helped with any pain.STORM
  5. rummy

    rummy Registered User

    Jul 15, 2005
    Here they ask if you have a living will when admitted to the hospital and keep it on record. Do you have it in her file at the hospital? Laws aside, it might help if you make sure they have a copy with her orders/files and know your Mom's wishes.
    Take care!
  6. jeannette

    jeannette Registered User

    Feb 27, 2006
    Thank you

    Thank you all for your messages, which have reassured me on that particular level. In fact, things are looking increasingly dreadful for her all round; her wound isn't healing, the swelling is very bad, incontinence with diarrhoea, horrible discomfort and distress from those bloody horrible socks and from the various IVs. If things do go on getting worse my sis and I are going to see if we can persuade them to let her get rid of the socks, because the implication seems to be she's going downhill badly, so we want her to be as comfortable as possible. And thankfully no one is suggesting any forced kind of feeding, just to keep on trying, which we all are. But it isn't working, and she's now too weak for any physio - and the great irony is that the hated AD, which has led to this awful situation, is actually shielding her from the true realization of the state she's in, many aspects of which she would have found unbearable. A very proud, private lady, reduced to this.
    I'm so sorry to be so depressing. I meant to just say thank you, but there you are. I do thank you all very, very much. Let's just all go on doing our best to protect them as well as we can, and try to take care of ourselves. Thankfully, it isn't all like this; there are good stories of peaceful ends at home and in good nursing homes, without particular pain or suffering. I wish that for as many as possible.
  7. mel

    mel Registered User

    Apr 30, 2006
    Hi Jeanette
    I'm just sorry I haven't been able to help.....not having been in that awful situation....i don't find your posts depressing....for my part I see them as an insight into what i may have to face in the future and that can only give me the strength to cope....
    Take care
  8. jeannette

    jeannette Registered User

    Feb 27, 2006

    Thanks again, all of you.
    Learned this morning that our mum has MRSA, and now they've had to move her to a single room, which is a great pity since the presence of nurses and other people was comforting to her (not like her at all pre-dementia, but definitely so now). Still, it had to be done, and they're promising to keep a very close eye on her because I've pointed out (repeatedly) that she probably can't think out what the call button is for.
    Still not eating, but she slept quite a lot this afternoon with me just sitting beside her, which was at least a peaceful interlude.
    Can't see too much hope now: 96, the hip, no food to speak of for almost two weeks, too weak for physio, and now MRSA. But they're treating it, so you never know.
    These posts just get cheerier, don't they!
  9. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    There aren't many blessings with all this are there? But maybe you have found one of them..... not much help to you... except to be able to acknowledge that 'mum' isn't so aware - and at this time - it may be a good thing......

    Perhaps being in her own room is best for a 'proud and private' lady at this time...

    Just sending love .. thinking of you

    Karen (TF), x
  10. jeannette

    jeannette Registered User

    Feb 27, 2006
    You're so right about that, Karen.
    Thank you so much again.
    I'm heading for the couch now - junk TV, a junk snack to go with it, let myself get sleepy, head for bed - and see what tomorrow brings.
    Love, Jeannette
  11. dmc

    dmc Registered User

    Mar 13, 2006
    hello jeanette

    so sorry to hear your mum now has MRSA, as if she hasnt enough to cope with, i hope today will bring better news for you
    thinking of you x
  12. kazlou

    kazlou Registered User

    Feb 3, 2006
    Hi Jeannette
    Sorry to hear of all your problems with Mum.
    My father 91 years old caught MRSA in hospital after a fall and a broken hip, he fought it off, they had to try several types of anti-biotics but it finally worked, he was in isolation for 2 weeks before he was clear, you will find your Mum is sleeping a lot as my Dad did. I used to sit and hold his hand and talk to him. I knows it not easy a bit of a roller coaster ride but hang on in there,
    BIG HUGS.........
  13. jeannette

    jeannette Registered User

    Feb 27, 2006
    Thanks again, and for your positive note, Kaz. Things going from bad to worse - and they act as if they're treating a 75 year old, not a 96 year old with advanced dementia. Asking stupid questions she can't possibly understand or answer. Ignoring her because she doesn't understand how to call them. Now her swallowing's getting difficult, and she's been in great pain and distress all day. We're going to try to get serious pain relief for her. Whether she's going to make it or not, why the hell does she have to suffer unnecessarily in the meantime?
    Getting angry now - hoping to be restrained for her sake.
  14. dmc

    dmc Registered User

    Mar 13, 2006
    hi jeannette,

    sometimes getting angry is the only way you can be heard, having been through the hospital route a lot in the last few years ive found that the only way to get things done is to make yourself heard,
    if you think mum is suffering then tell them and if that means getting angry well so be it,
    i know your probably scared they might be some repucussions on your mum i was always afraid of that too but it cant be any worse than the suffering she's having to endure at the moment.
    hoping you see an improvment soon
    thinking of you x
  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I'm with DMC - angry is now appropriate. Also, have you contacted your local PALS? (Patient advocacy and liaison services). They are supposed to be able to deal with this sort of problem. There are other complaint procedures, but time is of the essence here - you want it fixed, and you want it fixed now. Your local NHS/PCT should have details about the PALS, or try this link

  16. Lila13

    Lila13 Registered User

    Feb 24, 2006
    I was too scared (and exhausted and in shock) to be angry (or to express the anger) on that last day I visited my mother in hospital. But I don't know what difference it would have made if I could have said what I thought then.

  17. jeannette

    jeannette Registered User

    Feb 27, 2006
    Anger etc

    Thanks for these messages. The PALS tip is a good one - there's an office in the hospital, and we'll see how things go in the next day or two. On one hand, I had good cause for anger today - doc promising one thing, failing to discuss with nurses, let alone prescribe - and the nurses disagreed. I suggested a safe compromise to reduce pain and calm her, but they couldn't seem to cope with that. Re IVs and opiates (which may not be necessary yet, so I'm holding my fire) the doc told me that the night staff are "too junior" to cope with them! Very encouraging.
    On the plus side, my mum was not nearly as bad today - they've also identified yet another infection and are treating it. At least I hope they are, and not just leaving pills again. I found three pots of pills this morning. I promise you that my sister and I will not wait too long to tackle these problems - we're simply not prepared to let our mother suffer unnecessarily. But maybe (long shot, I know) the upturn will continue. We now have MRSA, urine infection and bowel infection.
    Time of year isn't helping. Lot of senior people on holiday.
    Shared a good takeaway tonight with my sis and husband, relished my own appetite (for once) and managed not to feel guilty. Not enjoying it wouldn't help her. Trying to keep my thoughts away from that sad room.
    Thanks again, very much.
  18. Helena

    Helena Registered User

    May 24, 2006
    Jeanette the way they are treating a 96 yr old is truly appalling
    She is extra vulnerable to these infections precisely because she has AD
    To leave her in pain when the infections may well be overpowering is criminal to say the least
    You truly have to wonder what they teach both nurses and doctors about treating patients or understanding disease
  19. jeannette

    jeannette Registered User

    Feb 27, 2006
    It got worse today before it got better. For the first time I nearly lost it, because I arrived and found tablets again left on the trolley - no IV! And then I found the nurse taking care of her and realized how truly concerned she was about my mother. She'd been taking out the IV again, has been refusing/unable to swallow medicine, take anything. This nurse was very worried on many levels because that means our mum is not having her antibiotics or pain relief - mostly though she's very concerned about the enormous level of fluid retention, which means more medication that they may not succeed in getting into her. My immediate concern, however, as before, was making her comfortable - and within five minutes this nurse arrived with a pethidine injection for her. (And they had already ordered a special mattress to make her more comfy - which did arrive.)

    Later however, after hand-over, I was told that she's now written up for four a day, but they'll only be given if she asks for them! Yet another "lesson" from lay-person to professional, pointing out that she will never ask for them because she has dementia and that's the way she is.
    Tonight, however, they have given her another, so maybe that, at least, may be under control, but I wouldn't count on it. What's the betting I arrive to find more useless tablets lying around?
    Tomorrow being Sunday we'll keep on hassling hard for what she needs. Come Monday, if the consultant's still "not available", I've been advised who to shoot for next. We know now - as much as we can know anything for sure - that our mother's very, very poorly, but our major concern remains to keep her as damned well comfortable as humanly possible.

    I am, by nature and practice, a good complainer - but it's finding the right people to complain to/yell at that's proving the problem. And something is keeping my anger damped down for now - an instinct that for the most part it's better for our mother.
  20. Kayla

    Kayla Registered User

    May 14, 2006
    When my Mum was in hospital, I didn't feel that the staff had much experience with elderly people, let alone those with dementia. A week or two in an Elderly Care Home and a Dementia Unit really ought to be included in their basic training. One of the tea trolley orderlies poured hot tea into a plastic beaker for Mum to drink. If she had drunk it, her mouth would have been burned, but I asked for extra cold milk to be added. On other occaisons, the drink was left out of reach and just went cold by the time we visited. Mum left hospital dangerously underweight. Visiting was not allowed at meal times.

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