1. animallover

    animallover Registered User

    Apr 21, 2014
    33
    Hi My Mum is in a CH and is now on liquidised food but quite often refuses to open her mouth and the only food she seems to enjoy is ice cream but last week we where informed by the CH that the SALT had been and informed the nurses that anyone on thickened drinks like my Mum could no longer have ice cream as it turns to water and she may choke (thought ice turned to water) but this is one of the only foods she still enjoys although she still refuses to even try this at times .Today she was very poorly and one of the lovely care workers gave us a small tub of ice cream but told the nurses we had asked for it and the nurse (bank staff) made me sign a form stating I knew the SALT team had informed the CH the danger of feeding ice cream and if my Mum choked on the ice cream it was my decision What has my poor Mum left to enjoy now but I still worry if I did the wright thing in signing the form has anyone else had this experience .
     
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    The such a bunch of dummies they would actually see someone starve to death than risk breaking one of the elf & safety rules. Why are the SALT (Speech And Language Therapy/ist to save everyone looking it up) even interested in her diet.
    If ice cream may turn to water and be a choking risk then does that mean water is off the agenda too, indeed all liquid then must be a choking risk, what a sack of do-do.
    K
     
  3. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,123
    Toronto, Canada
    I haven't had experience of this but I wouldn't worry about the signing. Asking you to do so was a bureaucratic act and a rather silly and unfeeling one, in my opinion.

    My mother is on thickened drinks but I can and have given her ice cream. Since I am my mother's PoA, I don't need to sign anything regarding my actions. However, I do have to sign off on a lot of matters regarding what the staff can or cannot do. I am in Canada so I would think the rules may well be different.
     
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    Joanne, you have no idea how many stupid rules we have in this country, they would see you starve to death than break a rule, common sense doesn't come into it,hard to believe but it's true.
    K
     
  5. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,475
    Radcliffe on Trent
    It is a shame, but a lot of it has come about because some people will always be looking for someone to blame if anything goes wrong (and ££ in compensation) so not surprising that organisations have become so cautious.
     
  6. canary

    canary Registered User

    Feb 25, 2014
    10,692
    Female
    South coast
    I am assuming that the SALT team are interested because of problems with her swallow reflex. Mum has not yet reached that stage, but at her CH I see many people who have to have all their drinks - tea, squash etc - thickened and unthickened water is indeed off the menu.
    Animal lover - does your mum like yoghurt? I know that you can get yoghurts that conform to the right stages of thickeners
     
  7. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    This is a bit worrying to say the least, but I think this is where it's all going wrong in the NHS, everyone is so cautious and it's all about ticking the boxes and to hell with the patients. My mother had a massive stroke 2 months ago and was basically written off by the last SALT who visited her and decided it was too risky (that word again) to make any attempts to get her to swallow anything and would have to be tube fed. My mother is still with us, although now deemed palliative by the hospital, having endured 2 months of being pushed and pulled about by various therapists and other hospital staff, moved from ward to ward, contracted various infections, endured the discomfort and indignity of endoscopy and rectal examinations, and through it all experienced a general lack of dignity and respect,.

    In the first couple of weeks she had good care in hospital, she was alert and engaging with the rehab team, she was able to swallow thickened liquids and we were told she would be able to progress to pureed food eventually. But then someone decided to move her to another ward, with unfamiliar staff and therapists, and she started to decline, and because she would not "engage" sufficiently, was more or less written off. Despite having LPA, no one really took much notice of our views. The treatment in hospital was inconsistent, different therapists would appear on rota and we would have to explain everything to them all over again, and eventually after 6 weeks of gradual decline due to not eating, fighting off hospital acquired infections and often brutal treatment from unqualified and inexperienced HCA's, the SALT decided it was unlikely she would ever swallow or speak again, and they sent her home to die.

    The care has gone out of our health service, as commented here it is all about risk and safety and protecting the organisation from being challenged or potentially sued for malpractice. When it comes to elderly care, particularly following a major trauma and having to be admitted to the unfamiliar surroundings of a busy hospital ward, so much depends on the approach from staff and particularly when it comes to problems with essential life sustaining things like food and fluids. My mother is now being risk fed by carers at her old CH and is swallowing a lot better, but they are also limited by health and safety rules - as Kevinl says, they would rather you starve to death than risk being sued for potential negligence. As she was deemed palliative by the hospital there is to be no follow up rehab or support from the stroke team and we are now considering getting some private speech therapy just so that she can be helped to express herself, as she is trying desperately to speak to us and her carers.
     
  8. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,475
    Radcliffe on Trent
    #8 Pickles53, Aug 3, 2015
    Last edited: Aug 3, 2015
    There is no excuse for treating anyone without dignity and respect, and I'm sorry that your mum has had such a bad experience. However, it can be a difficult judgement whether it it is appropriate for a patient with complex medical issues to have a very pro-active treatment regime which will involve lots of tests (some of which are not very pleasant however kind and thoughtful the staff are) or whether it would be better to follow a palliative regime focused on keeping the patient as comfortable and pain-free as possible, while maintaining the best quality of life feasible. That would include whatever is possible for eating/drinking. If you have LPA, would it not be possible to have a detailed discussion with the care home as to what the approach should be for your mum, and have it written in the same detail in her care plan? Perhaps they would be willing to try harder if they had your written consent? Or maybe her GP could review what they do and give them a bit more confidence? Apologies if you have tried this already.

    My FIL had treatment for bladder cancer and various other problems over many years including 10 when he was caring for MIL with dementia, which in itself took a tremendous toll of his health. In the last few months of his life, he was undergoing a fairly intensive treatment phase but was increasingly unhappy and finally acknowledged, not long after MIL had gone into a nursing home as she was close to death, that he just didn't want to be 'pushed and pulled about any more'. It was a very brave doctor who broached the issue of palliative care with us and introduced to the community hospice service. It wasn't what we wanted to hear at all, as we knew it meant we would lose him too, but we had to accept FIL's wishes.

    Perhaps we were lucky in that he could clearly say what he wanted as his mind was as sharp as a tack, but we didn't feel that he had in any way been 'written off' by the NHS.
     
  9. OlKlein

    OlKlein Registered User

    Mar 10, 2015
    13
    Ya, that's true.. no one wants to take the blame if something happens. My grandma had a phase where she would just chew the food and then keep it in her cheeks, not swallow it. Then, after a while, she would just spit everything out. We didn't understand why.. maybe she was afraid of swallowing? She is back to eating normally again, so I guess we will never know?
     
  10. OlKlein

    OlKlein Registered User

    Mar 10, 2015
    13
    Whenever we would ask her why she did that, she would just look at us and not say anything.
     
  11. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    425
    I don't live in the UK, and reading this thread I am guessing that PEG tubes (where a tube is inserted directly into the stomach through the abdominal wall) are not used with dementia patients in the UK. Is that right?

    LS
     
  12. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,475
    Radcliffe on Trent
    It depends. It's not something I would have wanted for my mum, but it may be appropriate for other patients with dementia.
     
  13. animallover

    animallover Registered User

    Apr 21, 2014
    33
    Thank you all for responding to my thread ,it is so helpful to know so many people agree with the fact our NHS are more worried about health and safety than the end of life care for our loved ones .Although I have POA for my Mum I live in Northern Ireland which means this only covers property and wealth not health issues .I visited Mum today and she was a lot brighter and the care staff told me she actually ate her breakfast and lunch as she was probably starving as she ate nothing yesterday but I noticed she was loosing her voice so probably has a sore throat which would not have helped yesterday but as her speech is getting worse and it is very hard to understand what she is trying to tell you the staff probably don't even know if she has maybe a throat infection .This is such an awful illness I don't know what to expect tomorrow I think my poor Mum has just had enough .
     
  14. animallover

    animallover Registered User

    Apr 21, 2014
    33
    she never liked yoghurt but I have been trying them and some days she will take a few spoonfulls and other days she won't open her teeth and I'm afraid of breaking them so give up .
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,692
    Female
    South coast
    Its not something that I would want either for my mum either.
     
  16. animallover

    animallover Registered User

    Apr 21, 2014
    33
    I've been trying yoghurts although she hated them before she got ill and she sometimes I can get her to take a small amount .The problem is although the food in her CH is good they give residents like my Mum semolina or cornflower with stewed fruit and Mum would never eat anything like that at home and thank goodness never made my brother or myself eat puddings like that so although it of the right consistency she just spits it out and says it's terrible .Don't blame her it makes me feel sick just looking at it .
     
  17. Beate

    Beate Registered User

    May 21, 2014
    11,723
    Female
    London
    As long as someone WANTS to eat, I think every effort should be made to help them do so unless this would hurt them or make them ill. It's different letting someone go who clearly has given up. I seriously don't understand how ice cream can be bad for someone?
     
  18. canary

    canary Registered User

    Feb 25, 2014
    10,692
    Female
    South coast
    I think the rational is that because of the poor swallow reflex they are concerned that she will inhale the ice cream when it melts and turns to liquid in her mouth.

    Whether they are being overly cautious is a different matter.
     
  19. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    Doctor prescribed Forticreme for my mother, bit like a yogurt consistency but more of a dessert and very high calories and protein. They come in different flavours and seem easier to swallow. Might be worth a try for some extra nutrition.
     

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